I cannot believe that we are 9 days away from 2010! Everybody always said once you have children, the years just fly by and that is so true for 2009.
2009 started with a lot of questions and worries...and is ending with a lot of answers, yet still many worries!
We made many good decisions over the last year that has allowed our financial stress to be eased tremendously! We moved to a cheaper apartment, paid off our Explorer, and I started with a job that pays well and allows me to work from home which saves on babysitters!
Even though we worked hard at easing our financial stress, our worries about Brycen's health and well being increased as the year went on. The year started with him regressing faster than we could keep up with...and is ending with a slow turn towards progress. I keep comparing his progress to losing weight...if you lose the weight too fast, you take the chance of it creeping back slowly. I am afraid if he starts to progress so fast, that we will take it for granted and expect it to continue and then he may "lose" it...and when you have a child with autism, you always take the chance of the regression starting again. It's one of those disorders that is "two steps forward, one step back."
We are very grateful to have been able to receive the answers about what was happening to him this year, though we may never know why it has happened. Many questions still hang over our heads...but that is ok, because it keeps us on our toes and keeps us fresh in our research and willingness to get involved with great organizations that are looking for those answers. Mike and I are not going to sit back and let Brycen's life pass before us like this...we are going to stand up for him and others affected by Autism...we are going to attend support groups to help ourselves and others...we are going to give what we can financially to those organizations who support us and our son...and we are going to continue educating those in Brycen's life so that he is included in everything he can handle!
We are looking forward to 2010 being a year of more answers and more progress!
Tuesday, December 22, 2009
Thursday, December 17, 2009
Brycen's Team page is ready!
Check out Brycen's team page to sign up to join the team or to make a donation! Donations can be made online by clicking on the Team Donation tab on his specific page or you can pull up a form to print off to send in a check!
Thanks again for all your support! Let's make Brycen's first team the best team ever!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=330303&lis=1&kntae330303=FD9FF1DD84464C428EEB9F183535562F&supId=0&team=3618519
Thanks again for all your support! Let's make Brycen's first team the best team ever!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=330303&lis=1&kntae330303=FD9FF1DD84464C428EEB9F183535562F&supId=0&team=3618519
Autism Speaks walk 2010
Please join us in supporting Brycen with the 2010 Autism Speaks walk in West Des Moines on the morning of Saturday, June 19! Mike and I will be forming a team in honor and support of Brycen (and of course all the other children affected by Autism). If you would like more details about the location of the walk, time, etc...please follow the link below to the Autism Speaks website. We will be starting a team page through the site that will provide information for walkers and for those who would like to donate to the team! I know it is still 6 months away, but Autism doesn't wait for anybody! We need to plan ahead and show as much support as possible for this wonderful organization that focuses on research and education about Autism.
If you have a business or if you work for a business that would like to donate, we will be including any business names on the t-shirt my cousin will be designing for us to wear that day also! More details to follow soon once we get our page up and running!
Thanks again for all the support you have given us and for all the support/donations that will be given as we prepare for the walk!
Monday, December 7, 2009
"It's beginning to look a lot like PROGRESS!"
Mike and I spent some time yesterday discussing how the heck I was going to keep a structured environment for Brycen for 2 WEEKS over xmas break so that he could transition back to school with no problems (while also continuing to work from home and complete all of my job expectations at the same time). Through this planning and worrying, I definitely realized why I did not go to school to be a teacher. I think, rethink, and then get distracted...and forget that I am supposed to be focusing on Brycen and his learning (not my sanity!).
So, I am enlisting my friend and co-worker, Megan, to help produce many pictures from Boardmaker that resembles any type of activity we have or may be able to do during those days. Megan attended a recent training with my Mom and I on picture schedules and communication with children with autism...but more on that in a later post. While she works on that, I have been forming a schedule that starts at 7am to 5:30pm each day. Since Brycen's attention span is very short and he has a hard time transitioning from a beloved activity, I am forming this schedule to include many of his favorites (IPTV first thing in morning, a train movie at rest time, blocks, musical instruments, Curious George at 5) as well as many things he needs to work on (flashcards, sorting, board games). I also plan to utilize Angie as much as possible, as she is home with Ellie all day and structures her time with centers and various projects (did I mention that she has a degree in education too!).
So among all this planning, I decided to try a few things out with Brycen that we have not tried in some time. Brycen received a new wooden train puzzle with sound from Kelsi last week. He LOVES it! When we first started putting it together, I noticed how fast he figured out where each piece goes (compares the picture on the piece to the picture on the board that it covers). So I decided to bring out some of the old wooden puzzles we have. He used to wrestle around the pieces, so these were put away during that stage of his (even though that stage has never ended). Well, he surprised the heck out of me! The kid can do every single one of them! He does it so fast and just needs help fitting the piece the right way, but he knows exactly where each of them go!
So, then we decided to break out the Memory game that his cousins gave him since they are too old for it now. I took out 8 different pictures that I knew he would recognize and their matches and placed them on the floor face down (of course Brycen helped me put them in an exact line too...my precious OCD boy!). We worked on taking turns, recognizing the matches, etc. He did fairly well with this...definitely better than I expected! I have faith that if we work on this daily during xmas break, I can have him to the point of playing more boardgames suited for his age (don't tell him, but he has a couple fun ones coming as gifts for Christmas).
So, then I found a pack of flashcards that his Aunt Brenda got him with simple pictures of things on them. I once again took out the ones I knew he was familiar with and also a few that I thought would be easier. Here are the ones that he said spontaneously: shoe, ball, and boat. He successfully imitated the following (with exception to the fact he doesn't pronounce every sound in the word, but close enough that we know what it is): fish, car, book, cake, hat, moon. He did try to imitate the rest though it sounded nothing like the word, but it was great that he tried and was being so very attentive: sun, sock, bear, pig (noise), cat (noise), baby, dog (noise), cow (noise), drum. Of course after every card, he had to line them up on the couch and I was not going to get his attention back for the next card until they were lined up right!
So to summarize the entire post...he has sneakily been learning things over the last couple months and I know he loved our excitement at watching him show us these skills and to hear his sweet voice trying to say these words. Soooo..."it's beginning to look a lot like progress!"
So, I am enlisting my friend and co-worker, Megan, to help produce many pictures from Boardmaker that resembles any type of activity we have or may be able to do during those days. Megan attended a recent training with my Mom and I on picture schedules and communication with children with autism...but more on that in a later post. While she works on that, I have been forming a schedule that starts at 7am to 5:30pm each day. Since Brycen's attention span is very short and he has a hard time transitioning from a beloved activity, I am forming this schedule to include many of his favorites (IPTV first thing in morning, a train movie at rest time, blocks, musical instruments, Curious George at 5) as well as many things he needs to work on (flashcards, sorting, board games). I also plan to utilize Angie as much as possible, as she is home with Ellie all day and structures her time with centers and various projects (did I mention that she has a degree in education too!).
So among all this planning, I decided to try a few things out with Brycen that we have not tried in some time. Brycen received a new wooden train puzzle with sound from Kelsi last week. He LOVES it! When we first started putting it together, I noticed how fast he figured out where each piece goes (compares the picture on the piece to the picture on the board that it covers). So I decided to bring out some of the old wooden puzzles we have. He used to wrestle around the pieces, so these were put away during that stage of his (even though that stage has never ended). Well, he surprised the heck out of me! The kid can do every single one of them! He does it so fast and just needs help fitting the piece the right way, but he knows exactly where each of them go!
So, then we decided to break out the Memory game that his cousins gave him since they are too old for it now. I took out 8 different pictures that I knew he would recognize and their matches and placed them on the floor face down (of course Brycen helped me put them in an exact line too...my precious OCD boy!). We worked on taking turns, recognizing the matches, etc. He did fairly well with this...definitely better than I expected! I have faith that if we work on this daily during xmas break, I can have him to the point of playing more boardgames suited for his age (don't tell him, but he has a couple fun ones coming as gifts for Christmas).
So, then I found a pack of flashcards that his Aunt Brenda got him with simple pictures of things on them. I once again took out the ones I knew he was familiar with and also a few that I thought would be easier. Here are the ones that he said spontaneously: shoe, ball, and boat. He successfully imitated the following (with exception to the fact he doesn't pronounce every sound in the word, but close enough that we know what it is): fish, car, book, cake, hat, moon. He did try to imitate the rest though it sounded nothing like the word, but it was great that he tried and was being so very attentive: sun, sock, bear, pig (noise), cat (noise), baby, dog (noise), cow (noise), drum. Of course after every card, he had to line them up on the couch and I was not going to get his attention back for the next card until they were lined up right!
So to summarize the entire post...he has sneakily been learning things over the last couple months and I know he loved our excitement at watching him show us these skills and to hear his sweet voice trying to say these words. Soooo..."it's beginning to look a lot like progress!"
Sunday, December 6, 2009
The transition from being parents to being a parent of a child with special needs
This is a post I have thought about for some time now. I have been having a hard time putting into words my feelings about the recent transitions our family has had to take in comparison with the transition to parenthood almost 3 1/2 years ago.
We knew we needed daycare when we were pregnant with Brycen. We knew we needed a crib, carseat, toys, changing table, baby gear, bottles, sleepers, bibs, etc ready to go when he was born. We thought we were ready to be parents! Then when we brought him home, and we were faced with his medical situation, his not eating well, the constant tracking of diapers and feedings...it was stressful! It is stressful for all new parents because your entire life has changed and no longer are you the only person you are caring for...there is this new baby who relies on you for everything so when that baby doesn't want to sleep and it is 2am, then you have to be awake with him even if you are so exhausted that you can't remember the last time you ate or got more than an hour of sleep at a time.
The second pregnancy and bringing the baby home is much easier. We knew a little of what to expect and may have had ourselves more mentally prepared for all of it.
But then something happened...all of a sudden our 2 yr old is not talking, he is not making much eye contact, he is yelling and not pointing anymore. He is obsessed with certain toys and won't play with others. He's waking up at all hours of the night, running away from the potty chair, and seems very upset most of the day and we have no clue what is wrong with him. It's like we have another baby in our house...we thought we were beyond that stage with him, but now he is going backwards and we have no control over it and can't stop it. We have a newborn that relies on us for everything and now we have a 2 yr old that is pretty much the same way again for no apparent reason.
After a few months, we realize something has changed in our family dynamics. Our 2 yr old needs as much attention, if not more, than our newborn. We have to plan for every little time we leave the house...try to look into the future to see what we will need if he presents this tantrum or this need. Then, you can't just go out with friends when you want to, even if they say "bring your kids along." You can't just get any babysitter there is, you need to have someone you trust and that understands and is interested in what is going on with your child. Someone with a lot of patience...and then you have to plan for everything while you are gone.
This is how our lives are going to be for a long time, if not forever. In the future, we will need to look at locks on the doors and windows as many children with autism tend to wander away at any time of day. We have to be cautious of events we attend, or make sure there is an escape route when we go somewhere in case he experiences sensory overload or has a tantrum. We have to pack many snacks and activities to keep him busy so that he doesn't fixate on certain things, or begin running around uncontrollably, or yelling in the middle of a church service.
Many of these things are what all parents of young children have to plan for and prepare themsevles for! I do know this as we have to do many of the same preparations for our one year old too! But as the children get older, they begin to learn appropriate behavior, quiet voices, how to entertain themselves, patience and that sometimes you have to wait in line. As a parent of a child with special needs, specifically diagnosed with autism, you may never have that experience of your child growing up and learning these things. We will continue to have a toddler for many years, as the children of our friends' grow up and are driving cars and going on dates. They can plan a night out without finding a babysitter, they know eventually they will get a good nights sleep when their children are older, they can take a shower longer than two minutes as they don't have to worry about their child harming themselves or his siblings, they can put their children in any of the daycares in town. Unless we decide to place Brycen in a residential facility (which we are not considering as an option at all), we will always have a toddler in our home. Even when we are 70 years old, we will have to worry that he will be taken care of appropriately after we are gone. We will forever be guardians of an adult that may always think and behave like a child.
Obviously God thought that we could handle this. Maybe that is why I chose psychology for my education, and human services with disabilities as my career long before Brycen was even thought of. This could be why Mike chose to enter the management program with Fareway, knowing the financial stability we will eventually have will allow me to be home with Brycen so we do not have to place him in a residential facility. Maybe that is why my closest friends are those that either work in the field or are a parent or family member of a child with a disability. We have found that we don't have much in common anymore with our single friends or our friends that do not have children...we have found our new group of friends that we know have experience and knowledge not only of parenting, but taking care of a child with special needs and we know that is the support that will carry us through the hurdles we will face over the years.
We knew we needed daycare when we were pregnant with Brycen. We knew we needed a crib, carseat, toys, changing table, baby gear, bottles, sleepers, bibs, etc ready to go when he was born. We thought we were ready to be parents! Then when we brought him home, and we were faced with his medical situation, his not eating well, the constant tracking of diapers and feedings...it was stressful! It is stressful for all new parents because your entire life has changed and no longer are you the only person you are caring for...there is this new baby who relies on you for everything so when that baby doesn't want to sleep and it is 2am, then you have to be awake with him even if you are so exhausted that you can't remember the last time you ate or got more than an hour of sleep at a time.
The second pregnancy and bringing the baby home is much easier. We knew a little of what to expect and may have had ourselves more mentally prepared for all of it.
But then something happened...all of a sudden our 2 yr old is not talking, he is not making much eye contact, he is yelling and not pointing anymore. He is obsessed with certain toys and won't play with others. He's waking up at all hours of the night, running away from the potty chair, and seems very upset most of the day and we have no clue what is wrong with him. It's like we have another baby in our house...we thought we were beyond that stage with him, but now he is going backwards and we have no control over it and can't stop it. We have a newborn that relies on us for everything and now we have a 2 yr old that is pretty much the same way again for no apparent reason.
After a few months, we realize something has changed in our family dynamics. Our 2 yr old needs as much attention, if not more, than our newborn. We have to plan for every little time we leave the house...try to look into the future to see what we will need if he presents this tantrum or this need. Then, you can't just go out with friends when you want to, even if they say "bring your kids along." You can't just get any babysitter there is, you need to have someone you trust and that understands and is interested in what is going on with your child. Someone with a lot of patience...and then you have to plan for everything while you are gone.
This is how our lives are going to be for a long time, if not forever. In the future, we will need to look at locks on the doors and windows as many children with autism tend to wander away at any time of day. We have to be cautious of events we attend, or make sure there is an escape route when we go somewhere in case he experiences sensory overload or has a tantrum. We have to pack many snacks and activities to keep him busy so that he doesn't fixate on certain things, or begin running around uncontrollably, or yelling in the middle of a church service.
Many of these things are what all parents of young children have to plan for and prepare themsevles for! I do know this as we have to do many of the same preparations for our one year old too! But as the children get older, they begin to learn appropriate behavior, quiet voices, how to entertain themselves, patience and that sometimes you have to wait in line. As a parent of a child with special needs, specifically diagnosed with autism, you may never have that experience of your child growing up and learning these things. We will continue to have a toddler for many years, as the children of our friends' grow up and are driving cars and going on dates. They can plan a night out without finding a babysitter, they know eventually they will get a good nights sleep when their children are older, they can take a shower longer than two minutes as they don't have to worry about their child harming themselves or his siblings, they can put their children in any of the daycares in town. Unless we decide to place Brycen in a residential facility (which we are not considering as an option at all), we will always have a toddler in our home. Even when we are 70 years old, we will have to worry that he will be taken care of appropriately after we are gone. We will forever be guardians of an adult that may always think and behave like a child.
Obviously God thought that we could handle this. Maybe that is why I chose psychology for my education, and human services with disabilities as my career long before Brycen was even thought of. This could be why Mike chose to enter the management program with Fareway, knowing the financial stability we will eventually have will allow me to be home with Brycen so we do not have to place him in a residential facility. Maybe that is why my closest friends are those that either work in the field or are a parent or family member of a child with a disability. We have found that we don't have much in common anymore with our single friends or our friends that do not have children...we have found our new group of friends that we know have experience and knowledge not only of parenting, but taking care of a child with special needs and we know that is the support that will carry us through the hurdles we will face over the years.
This week...4 years ago...and the difficult pregnancy to follow (Warning: It's a long one)
It's hard to believe that 4 years ago this week, we found out we were pregnant with Brycen! I remember that night so clearly. I had been showing some signs over the week and I asked a co-worker about them, and she literally laughed at me and said "you're pregnant." I stopped at the store on the way home from work that Friday to get a couple pregnancy tests after telling Mike about what she said. Mike's brother happened to be at our house that evening, but there was no way I was going to wait until he left because I was so excited...and a little nervous that it wasn't true. I made Mike look at it first and then he told me to look (not so sure he knew what he was looking for) and there it was...no doubt at all that I was pregnant!
Then within the week, the nausea and morning sickness set in. Only it definitely lasted all day long...when I first woke up, after I got out of shower, on way to work, in afternoon, on way home from work and sometimes before I went to bed. It was a rough couple months for Mike too! He had to actually grocery shop because I would get so nauseous just walking into a grocery store with all the smells and sights of different food. This was before he worked at Fareway, so grocery stores were still pretty foreign for him. I remember the multiple calls each time he had to go to the store, wanting to make sure he got the exact things on the list!
My pregnancy was not an easy one. When I was about 5 months along, a glass broke in the dishwater while I was washing dishes and sliced open my finger pretty bad. The question at Urgent care was how long it had been since my last tetanus shot...and then the other question was if it was safe for me to get one while pregnant. During my follow up with my physician a couple days later, he did some research and we decided together that I would get the tetanus shot as there was no known effects on a pregnancy.
Then in May when I was about 7 months along, my doctor determined my blood pressure was slowly creeping up. I began seeing an OB specialist for the rest of my pregnancy. At 38 weeks, she decided to induce so as not to take the chances of it creeping up any further and putting myself at risk of a seizure and the baby at risk of loss of oxygen. The induction went fabulous! I couldn't have asked for a better labor...I was between 2 and 3cm already so we had many options to start labor, but chose a new procedure using a balloon filled with water to dilate further and then a pitocin drip. Labor lasted less than 8 hours and the worse part was the end. The dr determined Brycen was face up (babies fit better through the canal when they are face down)...and after some time of trying to turn him and making no progress, we all decided on using the vacuum extraction. And there he was in a matter of moments, crying and so big!
Then within a matter of minutes, my BP crashed and I was beginning to pass out, so I was given some medicine to counteract that in my IV.
A couple days later, Brycen began showing extreme signs of jaundice. His levels were just under the point where they hospitalize him and when he is at risk of mental retardation. He received home nursing care with a biliblanket used 24 hours a day for about 5 days. The nurses would come out at least once a day to take his blood, measure and weigh him, and we also had to keep track of every wet and dirty diaper, as well as how much he was eating. He was not latching on very well with breastfeeding, so I would pump what I could and then supplement with formula as we knew the most important thing was helping his body rid of the bilirubin.
I look back at all these things that happened during my pregnancy and labor, and following and wonder if one or more of these things may have caused his autism. For the most part, he developed like a typical child, except he didn't crawl until 12 1/2 months and walk until 17 1/2 months. He also was a very calm baby, easily entertained, didn't experience separation anxiety, but didn't sleep well at all. He constantly needed some kind of stimulation while sleeping whether it was being rocked, sleeping in the vibrating bouncer, or using the vibrator under his mattress. Now that Mike and I look back at the past few years, we see some of the signs of autism creeping in through his development and mannerisms. But as first time parents, we didn't know what to look for.
I'm not sure we will ever know why or what triggered Brycen's autism. Whether it is a mix of our genes, or the fact the pregnancy had a few complications, or the jaundice following the birth...I am not sure if it really matters anymore. It matters for other children in the future of course, but for Brycen's specific situation, our attention needs to be more focused on how we can help him on a daily basis to live the most fulfilling life possible!
Then within the week, the nausea and morning sickness set in. Only it definitely lasted all day long...when I first woke up, after I got out of shower, on way to work, in afternoon, on way home from work and sometimes before I went to bed. It was a rough couple months for Mike too! He had to actually grocery shop because I would get so nauseous just walking into a grocery store with all the smells and sights of different food. This was before he worked at Fareway, so grocery stores were still pretty foreign for him. I remember the multiple calls each time he had to go to the store, wanting to make sure he got the exact things on the list!
My pregnancy was not an easy one. When I was about 5 months along, a glass broke in the dishwater while I was washing dishes and sliced open my finger pretty bad. The question at Urgent care was how long it had been since my last tetanus shot...and then the other question was if it was safe for me to get one while pregnant. During my follow up with my physician a couple days later, he did some research and we decided together that I would get the tetanus shot as there was no known effects on a pregnancy.
Then in May when I was about 7 months along, my doctor determined my blood pressure was slowly creeping up. I began seeing an OB specialist for the rest of my pregnancy. At 38 weeks, she decided to induce so as not to take the chances of it creeping up any further and putting myself at risk of a seizure and the baby at risk of loss of oxygen. The induction went fabulous! I couldn't have asked for a better labor...I was between 2 and 3cm already so we had many options to start labor, but chose a new procedure using a balloon filled with water to dilate further and then a pitocin drip. Labor lasted less than 8 hours and the worse part was the end. The dr determined Brycen was face up (babies fit better through the canal when they are face down)...and after some time of trying to turn him and making no progress, we all decided on using the vacuum extraction. And there he was in a matter of moments, crying and so big!
Then within a matter of minutes, my BP crashed and I was beginning to pass out, so I was given some medicine to counteract that in my IV.
A couple days later, Brycen began showing extreme signs of jaundice. His levels were just under the point where they hospitalize him and when he is at risk of mental retardation. He received home nursing care with a biliblanket used 24 hours a day for about 5 days. The nurses would come out at least once a day to take his blood, measure and weigh him, and we also had to keep track of every wet and dirty diaper, as well as how much he was eating. He was not latching on very well with breastfeeding, so I would pump what I could and then supplement with formula as we knew the most important thing was helping his body rid of the bilirubin.
I look back at all these things that happened during my pregnancy and labor, and following and wonder if one or more of these things may have caused his autism. For the most part, he developed like a typical child, except he didn't crawl until 12 1/2 months and walk until 17 1/2 months. He also was a very calm baby, easily entertained, didn't experience separation anxiety, but didn't sleep well at all. He constantly needed some kind of stimulation while sleeping whether it was being rocked, sleeping in the vibrating bouncer, or using the vibrator under his mattress. Now that Mike and I look back at the past few years, we see some of the signs of autism creeping in through his development and mannerisms. But as first time parents, we didn't know what to look for.
I'm not sure we will ever know why or what triggered Brycen's autism. Whether it is a mix of our genes, or the fact the pregnancy had a few complications, or the jaundice following the birth...I am not sure if it really matters anymore. It matters for other children in the future of course, but for Brycen's specific situation, our attention needs to be more focused on how we can help him on a daily basis to live the most fulfilling life possible!
Friday, December 4, 2009
A glimpse of what could be
As you all know, Brycen can be challenging one moment and then be a perfect angel the next! Just like any other preschooler! Last night, he actually gave me a very small glimpse into what he actually can do with the right discipline and when he is in the right mood.
First of all, while I was trying to get some things done around the house, Brycen and Aubree decided to play a "game." Aubree would hide behind the easel in Brycen's room and Brycen would come out and pretend to look around for her. At least this is what I believe they were doing since neither can tell me what was really going on. I would then walk back to Brycen's room, "find" Aubree, and make a big deal about playing Hide & Seek. They both would laugh and then do the same thing again about 5 more times. This gave me a little glimpse into the way they can play together as siblings and also a little of creative play on Brycen's part.
Then we went downstairs to the playroom after supper so they could burn off a little energy before having to pack it up for their 2nd H1N1 shots and the grocery store. Brycen does not appreciate when anybody, especially his little sister, disrupts his line of trucks, cars, and trains. Of course, Aubree also doesn't appreciate that Brycen takes all of these toys for himself and allows her not to have a single one! So, Aubree went to grab one for herself and Brycen pushed her down and she bumped her nose and cheek on the corner of the table. Typically, we do not use time-outs with Brycen because they have not worked...so usually we remove either the toy that is causing the problem or remove him from the situation. Well, I was really upset about what he did for obvious reasons and I told him to go sit in the chair for a time-out not really expecting him to do it but I had to do something to make myself feel better and to show Aubree that I was trying to discipline him for being mean to her. Surprisingly, he actually walked over to the chair and sat down....for 45 seconds! Not as long as he should have for the typical child his age, but anything over 2 seconds is an accomplishment for him! I then told him what he did wrong and that he needed to give Aubree a hug and kiss because he gave her an owie. And guess what? He did as I asked...and then he nicely touched her head before he went to the other side of the room to once again begin lining up his toys. Now, this same thing could have happened the day before and he would never have responded that well to the discipline.
This is the glimpse into what we feel he can achieve and how it seems like for a few seconds or minutes occasionally, he is actually understanding the world around him! The hard part of this is the hope I get following a moment like this...and then the heartbreak I feel when weeks go by without another glimpse.
My friend, Angie, blogged recently about what has been taken away when regressive autism sets in. As our children reach toddlerhood, we begin to hear words, see relationships form, and watch as our children play appropriately with toys and are creative...and then in a matter of days, weeks, couple months it all disappears! We were given a glimpse of what they were and now nobody can tell us if we will ever see that again. We have a lot of home videos of Brycen during those times...but I don't have the heart to watch them yet. I know it will hurt to see the little boy he was before this horrible thing called Autism took over his brain and his body. But maybe those home videos are what the doctors will be able to use in the future to find a cure, find a reason it happened, or find anything to help these children to go back to the way they were!
First of all, while I was trying to get some things done around the house, Brycen and Aubree decided to play a "game." Aubree would hide behind the easel in Brycen's room and Brycen would come out and pretend to look around for her. At least this is what I believe they were doing since neither can tell me what was really going on. I would then walk back to Brycen's room, "find" Aubree, and make a big deal about playing Hide & Seek. They both would laugh and then do the same thing again about 5 more times. This gave me a little glimpse into the way they can play together as siblings and also a little of creative play on Brycen's part.
Then we went downstairs to the playroom after supper so they could burn off a little energy before having to pack it up for their 2nd H1N1 shots and the grocery store. Brycen does not appreciate when anybody, especially his little sister, disrupts his line of trucks, cars, and trains. Of course, Aubree also doesn't appreciate that Brycen takes all of these toys for himself and allows her not to have a single one! So, Aubree went to grab one for herself and Brycen pushed her down and she bumped her nose and cheek on the corner of the table. Typically, we do not use time-outs with Brycen because they have not worked...so usually we remove either the toy that is causing the problem or remove him from the situation. Well, I was really upset about what he did for obvious reasons and I told him to go sit in the chair for a time-out not really expecting him to do it but I had to do something to make myself feel better and to show Aubree that I was trying to discipline him for being mean to her. Surprisingly, he actually walked over to the chair and sat down....for 45 seconds! Not as long as he should have for the typical child his age, but anything over 2 seconds is an accomplishment for him! I then told him what he did wrong and that he needed to give Aubree a hug and kiss because he gave her an owie. And guess what? He did as I asked...and then he nicely touched her head before he went to the other side of the room to once again begin lining up his toys. Now, this same thing could have happened the day before and he would never have responded that well to the discipline.
This is the glimpse into what we feel he can achieve and how it seems like for a few seconds or minutes occasionally, he is actually understanding the world around him! The hard part of this is the hope I get following a moment like this...and then the heartbreak I feel when weeks go by without another glimpse.
My friend, Angie, blogged recently about what has been taken away when regressive autism sets in. As our children reach toddlerhood, we begin to hear words, see relationships form, and watch as our children play appropriately with toys and are creative...and then in a matter of days, weeks, couple months it all disappears! We were given a glimpse of what they were and now nobody can tell us if we will ever see that again. We have a lot of home videos of Brycen during those times...but I don't have the heart to watch them yet. I know it will hurt to see the little boy he was before this horrible thing called Autism took over his brain and his body. But maybe those home videos are what the doctors will be able to use in the future to find a cure, find a reason it happened, or find anything to help these children to go back to the way they were!
Wednesday, December 2, 2009
Dad Writes Again
As many of you know Brycen doesn't sleep thru the night very often. Infact he might be lucky if he sleeps thru the night once a week. Melissa has to be with the kids all day the least I can do is the nights with Brycen. Melissa and Aubree sleep in their own bedroom to ensure that Aubree doesn't wake up. I sleep on a matress on the floor in the living room as Brycen attempts to sleep in his own room. Many times I sleep only four to six hours depending on how fast Brycen goes back to sleep. The decision to do this is the best decision for our family, it has to be better than giving my three year old son meds to sleep.
When Melissa and the kids were gone over thanksgiving I did not sleep well. I was awake not because I was used to it but because I missed that time with Brycen. At night that is sometimes my time to help him anyway I can. Some nights the thing Brycen needs (and I need) is cuddle time. The cuddle time (no matter how little sleep we are talking) is what keeps me "sain" at work. The strange thing is I missed waking up with my son during the night but I also know for my sake and Brycen's meds aren't just an option but a necessity.
The scary thing about the meds is the side effects. Could you imagine giving your son a med that makes other things much worse, or could this med (to help me sleep more) make his life miserable. I would rather NEVER sleep than let happen.
Infact when I hear other poeple talk about not slepping much or being tired, I say to myself "try sleeping on my darn pillow". Most poeple are so misinformed about autism that they don't know about the sleep issues (besides other things). I'm lucky that I have had some breaks when Melissa travels with the kids but I know that on most night about 2:30 a.m. I'm making it up to her and to Brycen. I think in small way Brycen loves having "Dadddy" take care of him during the night (and Daddy loves taking care of Brycen).
When Melissa and the kids were gone over thanksgiving I did not sleep well. I was awake not because I was used to it but because I missed that time with Brycen. At night that is sometimes my time to help him anyway I can. Some nights the thing Brycen needs (and I need) is cuddle time. The cuddle time (no matter how little sleep we are talking) is what keeps me "sain" at work. The strange thing is I missed waking up with my son during the night but I also know for my sake and Brycen's meds aren't just an option but a necessity.
The scary thing about the meds is the side effects. Could you imagine giving your son a med that makes other things much worse, or could this med (to help me sleep more) make his life miserable. I would rather NEVER sleep than let happen.
Infact when I hear other poeple talk about not slepping much or being tired, I say to myself "try sleeping on my darn pillow". Most poeple are so misinformed about autism that they don't know about the sleep issues (besides other things). I'm lucky that I have had some breaks when Melissa travels with the kids but I know that on most night about 2:30 a.m. I'm making it up to her and to Brycen. I think in small way Brycen loves having "Dadddy" take care of him during the night (and Daddy loves taking care of Brycen).
Tuesday, November 24, 2009
Another child, similar situation
A couple months ago, I met another mom from the Storm Lake area that is going through a similar situation with her daughter, Ellie. We met by chance...she has business cards that she hands out in public when she cannot either find the words or doesn't have the time to explain the situation with Ellie to those she may encounter. She handed one of these cards to a cashier at Fareway and that card made it's way back to Mike, which of course he brought home to me. I immediately checked out the website/blog she has about Ellie and her family's fight with autism and left a comment for her, thanking her for sharing Ellie's situation with those that are not familiar.
To make a long story just a little shorter, we are becoming fast friends and have realized just how much we have in common. Both of our children developed typically until before their 2nd birthday and then started regressing. Both Ellie and Brycen are 3, both received AEA services, our youngest daughters are within a couple months of each other (she also has an older daughter) and we both are scared and keep an attentive eye on our younger ones for any sign of regression as they get closer to the age that Ellie and Brycen regressed. There are so many similarities, yet Brycen and Ellie are so different in their symptoms and behaviors related to autism.
I want everybody that reads this to keep Ellie and Angie in their thoughts and prayers as they continue to fight their battle with autism! Please check out Angie's blog about Ellie (I have attached a link below) and keep updated on her progress just like you do with Brycen.
Two different families...same fight against a horrible and tragic disorder that affects our two very different children!
http://fightautism.webs.com
To make a long story just a little shorter, we are becoming fast friends and have realized just how much we have in common. Both of our children developed typically until before their 2nd birthday and then started regressing. Both Ellie and Brycen are 3, both received AEA services, our youngest daughters are within a couple months of each other (she also has an older daughter) and we both are scared and keep an attentive eye on our younger ones for any sign of regression as they get closer to the age that Ellie and Brycen regressed. There are so many similarities, yet Brycen and Ellie are so different in their symptoms and behaviors related to autism.
I want everybody that reads this to keep Ellie and Angie in their thoughts and prayers as they continue to fight their battle with autism! Please check out Angie's blog about Ellie (I have attached a link below) and keep updated on her progress just like you do with Brycen.
Two different families...same fight against a horrible and tragic disorder that affects our two very different children!
http://fightautism.webs.com
What we have been waiting for has finally arrived!
I am so excited to share that as of this afternoon, Brycen officially has respite and Supported Community Living services approved to him! I received the Notice of Decision by fax this afternoon and am so pleased to begin the respite this week when I am back in Evansdale with family. My mom is going to be our main respite provider and Kelsi will be our main SCL provider. We are looking at hiring a second SCL provider as back up for when Kelsi goes home for Christmas break.
For SCL, Brycen will be working on three main goals for 20 hours per month: Safety, Independent Living, and Communication. We are waiting for written notification about the goals before Kelsi can officially start them, but these are things she has already been working with him on for months, so it will be an easy transition to just documenting them a certain way.
The respite hours will be a nice way for us to feel comfortable with leaving Brycen and give us a break. We chose my mom as she knows Brycen better than most and he is so comfortable with her, listens to her, and has fun with her! She and my Dad have already been doing so much to help us out by offering to come here in October and always willing to watch Brycen while I run errands and such while back in Evansdale. Now we won't feel so guilty about leaning on them so much since Mom will get paid for her help in all of this! We are already planning a few days for just Mike and I to go to Mall of America in February! Since Dad is now retired (and since Aubree is a Grandpa's girl), he can come along and hang out with Aubree while Mom works respite with Brycen when he is not in school.
It's been a long 3 months since starting the application process and moving the paperwork forward, but I have learned that all that hard work is paying off finally! All the calls, emails, faxes, visits to DHS...all felt like it was a job in itself, meanwhile continuing to work on paperwork for my own clients for work...it has all resulted in what we set out to achieve for Brycen...the insurance that will allow him further treatments and assessments needed, as well as the goal based program to help him become more independent!
For SCL, Brycen will be working on three main goals for 20 hours per month: Safety, Independent Living, and Communication. We are waiting for written notification about the goals before Kelsi can officially start them, but these are things she has already been working with him on for months, so it will be an easy transition to just documenting them a certain way.
The respite hours will be a nice way for us to feel comfortable with leaving Brycen and give us a break. We chose my mom as she knows Brycen better than most and he is so comfortable with her, listens to her, and has fun with her! She and my Dad have already been doing so much to help us out by offering to come here in October and always willing to watch Brycen while I run errands and such while back in Evansdale. Now we won't feel so guilty about leaning on them so much since Mom will get paid for her help in all of this! We are already planning a few days for just Mike and I to go to Mall of America in February! Since Dad is now retired (and since Aubree is a Grandpa's girl), he can come along and hang out with Aubree while Mom works respite with Brycen when he is not in school.
It's been a long 3 months since starting the application process and moving the paperwork forward, but I have learned that all that hard work is paying off finally! All the calls, emails, faxes, visits to DHS...all felt like it was a job in itself, meanwhile continuing to work on paperwork for my own clients for work...it has all resulted in what we set out to achieve for Brycen...the insurance that will allow him further treatments and assessments needed, as well as the goal based program to help him become more independent!
Friday, November 20, 2009
Haircuts...the trauma for all
I once again attempted a haircut tonight with Brycen...and eventually I was successful but not without feeling like I am torturing him and myself in the process! Brycen gets so scared, trembles, shivers, and yells anytime someone wants to cut his hair. Due to his extreme fear of hair dryers, razors and unfamiliar places, we only take him to the salon every 6 months or so for a touch up, but in the meantime, it's up to me to trim him up the best I can. In the salon, we have to hold him down on our lap to get it done while he screams, throws things, and hits the entire time.
I dread these times as I feel like the worst mother in the world when I see his response to seeing the scissors, comb, and a towel. I've tried to wet it down with a water bottle, but that also scares him so I resort to getting it slightly damp and just working as fast as I can despite his constant moving, crying, and yelling. Every time the comb touches his hair or he feels the scissors graze his skin while cutting the hair on the back of his neck, he trembles like he is in pain.
I use lots of bribery (sucker, train movie) and tonight I promised him a trip to the store to see Daddy if he could do it. That calmed him for about 5 seconds and then it was back to the yelling and crying again. I wish I knew what he was feeling and why cutting the hair is so traumatic for him. He typically doesn't care when we need to scrub it in the bath, comb it after baths, or when we smooth down his hair to calm him at bedtime...so why does it all of a sudden bother him when we are touching his hair to cut it? I think this will always puzzle me...but in the meantime, he needs to have his haircut so I guess I get to feel like a bad Mom every couple months and suffer through the ordeal with him. I can only hope it will get better....or at least not get any worse than it already is to him!
Just in case you are wondering, I did follow through with the trip to the store to see Daddy too! I'm not sure if he remembered I promised that, but I wasn't going to take the chance at another tantrum following the haircut if I didn't follow through!
I dread these times as I feel like the worst mother in the world when I see his response to seeing the scissors, comb, and a towel. I've tried to wet it down with a water bottle, but that also scares him so I resort to getting it slightly damp and just working as fast as I can despite his constant moving, crying, and yelling. Every time the comb touches his hair or he feels the scissors graze his skin while cutting the hair on the back of his neck, he trembles like he is in pain.
I use lots of bribery (sucker, train movie) and tonight I promised him a trip to the store to see Daddy if he could do it. That calmed him for about 5 seconds and then it was back to the yelling and crying again. I wish I knew what he was feeling and why cutting the hair is so traumatic for him. He typically doesn't care when we need to scrub it in the bath, comb it after baths, or when we smooth down his hair to calm him at bedtime...so why does it all of a sudden bother him when we are touching his hair to cut it? I think this will always puzzle me...but in the meantime, he needs to have his haircut so I guess I get to feel like a bad Mom every couple months and suffer through the ordeal with him. I can only hope it will get better....or at least not get any worse than it already is to him!
Just in case you are wondering, I did follow through with the trip to the store to see Daddy too! I'm not sure if he remembered I promised that, but I wasn't going to take the chance at another tantrum following the haircut if I didn't follow through!
Friday, November 13, 2009
What a week!
We have had an interesting week here! Aubree left on Monday to stay in Evansdale with Grandma and Grandpa O and her daddy and I have really been missing her...but Brycen doesn't really seem to notice. One time when we asked him where Aubree was, he looked out the window at the car like I had left her in the car or something! I know he has enjoyed being an only child for the week and I have definitely enjoyed the special time we have had and getting to run errands together like old times!
I cannot even run the basic errand with both kids now, since I never know how Brycen will be, or if he will try to run from me and then I am chasing him with Aubree in tow. When he gets into one of his uncontrollable times where he is hitting, kicking, spitting, and pulling hair and I have to carry him screaming back to the car or wherever, there is no way I could do that safely with Aubree along. So, only having Brycen this week allowed me to take him everywhere with me! He went with me to Fareway multiple times which he always enjoys seeing Daddy and helping to push the cart. And he was on his best behavior most of the week and was very good in the store each time!
Mike and I went to our first Autism support group this last Tuesday where we met a few people that also have children on the Autism Spectrum. It was nice talking and sharing with people that are at different stages of raising a child on the spectrum and getting advice on where to go from here. Mike and I have agreed this is something we need to involve ourselves in no matter where we are moved to. I think it is very important that not only do we have family and friends that know us supporting us, but having others out there that may not know us as well, but know our situation even better than we do sometimes! We are grateful to Dr. Grant (who I saw all through my pregnancy with Aubree and who delivered her) as he originally mentioned the support group to me this last summer and to his wife who has been a great support talking to Mike at the store when she is shopping. We are also grateful to Angie, who I may have just met here in Storm Lake, but feel that I can relate to more and more each day as we have children the same age and her 3 yr old girl also has been diagnosed with an ASD, and to Betsy who called us to invite us to our first meeting and made us feel so welcome!
The last several months have been a roller coaster of various emotions, tears, and grieving...but our understanding and acceptance of what God has chosen for us is getting easier each day. We both still have our rough days, but we have learned to lean on each other and talk it out more since we know best what each is going through. Even though we have plenty of friends and family that support us, we know that we couldn't do this without each other and that is the best support we can ever give to ourselves and both Brycen and Aubree as we continue to confront Autism!
I cannot even run the basic errand with both kids now, since I never know how Brycen will be, or if he will try to run from me and then I am chasing him with Aubree in tow. When he gets into one of his uncontrollable times where he is hitting, kicking, spitting, and pulling hair and I have to carry him screaming back to the car or wherever, there is no way I could do that safely with Aubree along. So, only having Brycen this week allowed me to take him everywhere with me! He went with me to Fareway multiple times which he always enjoys seeing Daddy and helping to push the cart. And he was on his best behavior most of the week and was very good in the store each time!
Mike and I went to our first Autism support group this last Tuesday where we met a few people that also have children on the Autism Spectrum. It was nice talking and sharing with people that are at different stages of raising a child on the spectrum and getting advice on where to go from here. Mike and I have agreed this is something we need to involve ourselves in no matter where we are moved to. I think it is very important that not only do we have family and friends that know us supporting us, but having others out there that may not know us as well, but know our situation even better than we do sometimes! We are grateful to Dr. Grant (who I saw all through my pregnancy with Aubree and who delivered her) as he originally mentioned the support group to me this last summer and to his wife who has been a great support talking to Mike at the store when she is shopping. We are also grateful to Angie, who I may have just met here in Storm Lake, but feel that I can relate to more and more each day as we have children the same age and her 3 yr old girl also has been diagnosed with an ASD, and to Betsy who called us to invite us to our first meeting and made us feel so welcome!
The last several months have been a roller coaster of various emotions, tears, and grieving...but our understanding and acceptance of what God has chosen for us is getting easier each day. We both still have our rough days, but we have learned to lean on each other and talk it out more since we know best what each is going through. Even though we have plenty of friends and family that support us, we know that we couldn't do this without each other and that is the best support we can ever give to ourselves and both Brycen and Aubree as we continue to confront Autism!
Wednesday, November 4, 2009
Jealousy...normal I guess
As the days, weeks, and months go by, it is definitely getting easier to accept what God has dealt us with Brycen. But I still have many days where I feel so much jealousy...at the store when I hear a toddler saying clear words, when friends/family comment on Facebook about their child learning their ABC's or counting, when seeing/hearing a 3 yr old is successful in potty training, when a 3 yr old is put in time-out and actually sits there, when two siblings are playing together outside or at the playground...and the list goes on. I feel jealous when I see these things, but then again I know that as parents to Brycen, we will never take a simple word he says or accomplishment he learns for granted!
I feel bad when I feel this way, but I just can't help it! I compare Brycen to other children, mostly to determine what we seriously need to work on that is typical for his age, but I also find myself once again wondering "why?" I think I will never stop wondering that...I think it is human nature to always question the things that happen to us, whether good or bad.
When I was pregnant with Aubree, Mike and I had already discussed not having any more children. Then when Brycen was initially diagnosed, we confirmed with ourselves that we didn't think it was fair to either of them if we had another child as Brycen needs so much of our attention and energy. But then I also wonder if that is fair to Aubree...she will not know what it is like to have a sibling to play with or to share secrets with and so on. When Mike and I are gone someday, it will be up to Aubree to take care of Brycen (unless of course we experience some wonderful research miracles that help him to become more independent and find successful treatments for him!). I see the joy in her little face and hear the constant giggles for those few moments each day when he pays attention to her! She doesn't usually mind when he knocks her over or purposely runs into her, because she is craving any kind of attention he will give her. Then, within seconds, I watch as she is following him around, trying to capture his attention and wanting him to play like a typical sibling would. It makes me sad that she may never have that close sibling relationship...but then again, maybe they will have a different type of close relationship where she will become more of a mother to him and will teach him things as they are growing up.
So, I guess though I may be jealous of some things...I know that there is positive that goes along with the negative. How the day starts or what happens during the day will determine whether I view the glass as half full or half empty that day...and that view can change many times throughout the day!
I feel bad when I feel this way, but I just can't help it! I compare Brycen to other children, mostly to determine what we seriously need to work on that is typical for his age, but I also find myself once again wondering "why?" I think I will never stop wondering that...I think it is human nature to always question the things that happen to us, whether good or bad.
When I was pregnant with Aubree, Mike and I had already discussed not having any more children. Then when Brycen was initially diagnosed, we confirmed with ourselves that we didn't think it was fair to either of them if we had another child as Brycen needs so much of our attention and energy. But then I also wonder if that is fair to Aubree...she will not know what it is like to have a sibling to play with or to share secrets with and so on. When Mike and I are gone someday, it will be up to Aubree to take care of Brycen (unless of course we experience some wonderful research miracles that help him to become more independent and find successful treatments for him!). I see the joy in her little face and hear the constant giggles for those few moments each day when he pays attention to her! She doesn't usually mind when he knocks her over or purposely runs into her, because she is craving any kind of attention he will give her. Then, within seconds, I watch as she is following him around, trying to capture his attention and wanting him to play like a typical sibling would. It makes me sad that she may never have that close sibling relationship...but then again, maybe they will have a different type of close relationship where she will become more of a mother to him and will teach him things as they are growing up.
So, I guess though I may be jealous of some things...I know that there is positive that goes along with the negative. How the day starts or what happens during the day will determine whether I view the glass as half full or half empty that day...and that view can change many times throughout the day!
Monday, November 2, 2009
Brycen's triumph over sorting colors
I am so excited to share with everybody what the teacher shared with me today when I picked Brycen up from school! They have successfully taught him how to sort different color figurines into the matching color bowls! They demonstrated to me before we left...she gave Brycen 4 different bowls (red, yellow, green, and blue) and a handful of various colored animal figurines. They play the game of "bounce, bounce, bounce goes the duck" and Brycen bounces the duck right over to the matching bowl! He did this about 7-8 times with different colors and it was amazing at how fast he did it...like it was second nature. And he was sooooo proud of himself and loved when the teacher picked him up and gave him a huge hug!
Earlier this summer, his speech pathologist had tried this with him and Brycen was not successful at that time. Now that he is getting the consistent teaching and the teachers are figuring out the way he learns best, he was able to accomplish this major task! I can't wait to practice this with him at home with various blocks and to move onto teaching him the difference between square, circle, etc and the names of the colors.
Kelsi, BV student that works with him twice a week, has been working hard with him on counting 1-2-3. Brycen is doing a great job of imitating this and holding up his fingers for each number like she does. She also took him successfully to the library to look and check out books a couple weeks ago. When she did this last Spring, he wanted to run in the aisles after some time of being there. But this time, his attention span was so much better and he sat down on the floor and looked at books and did not try to run at all!
It's really these little steps that make a difference! Despite having to deal with a difficult situation with him on Saturday during downtown trick-or-treating...it's these positive moments that definitely out-weigh the difficult and stressful times.
Earlier this summer, his speech pathologist had tried this with him and Brycen was not successful at that time. Now that he is getting the consistent teaching and the teachers are figuring out the way he learns best, he was able to accomplish this major task! I can't wait to practice this with him at home with various blocks and to move onto teaching him the difference between square, circle, etc and the names of the colors.
Kelsi, BV student that works with him twice a week, has been working hard with him on counting 1-2-3. Brycen is doing a great job of imitating this and holding up his fingers for each number like she does. She also took him successfully to the library to look and check out books a couple weeks ago. When she did this last Spring, he wanted to run in the aisles after some time of being there. But this time, his attention span was so much better and he sat down on the floor and looked at books and did not try to run at all!
It's really these little steps that make a difference! Despite having to deal with a difficult situation with him on Saturday during downtown trick-or-treating...it's these positive moments that definitely out-weigh the difficult and stressful times.
Wednesday, October 21, 2009
Dear Brycen...
I was glancing through Brycen's baby book the other day and ran across the pages where the parent writes a letter to the baby. Mike and I wrote these letters to Brycen shortly after he was born, over 3 years ago! We would like to share with you what we wrote then to our sweet, precious, gorgeous baby boy!
A LETTER FROM MOMMY
Brycen- I always knew I wanted children and as soon as we were in married in April 2005, Daddy and I decided to let things just happen. Daddy says he knew I was pregnant before I did, so I decided we had better find out since I wasn't feeling good. I was so excitede when we found out in December 2005 that I was pregnant with you. After the first few months, I was feeling much better and started to read all about you and how much you were growing inside me. I loved going to every doctor appointment and hearing your heartbeat, and seeing the pictures of you at my ultrasounds, and imagining what you would look like! I knew I loved you from the moment I found out about you and I didn't think I could love you any more, until the day you were born. That's when I realized what everybody says about unconditional love! Remember that Daddy adn I will always be there for you and will always love you more than you'll ever know.
A LETTER FROM DADDY
Brycen- You already have made Mommy and I so happy. Seeing you for the first time nearly made me cry with happiness. I promise to teach you everything that I know and more. My goal for you is to be a better man than your Daddy. You also can come to Mommy and I for anything because with our love, we will always help you. July 24th is most definitely teh happiest day of our lives and the fun is just beginning. We are excited to see how your puppy, Mason, welcomes you home. Thanks for making our lives complete. I love you!
A LETTER FROM MOMMY
Brycen- I always knew I wanted children and as soon as we were in married in April 2005, Daddy and I decided to let things just happen. Daddy says he knew I was pregnant before I did, so I decided we had better find out since I wasn't feeling good. I was so excitede when we found out in December 2005 that I was pregnant with you. After the first few months, I was feeling much better and started to read all about you and how much you were growing inside me. I loved going to every doctor appointment and hearing your heartbeat, and seeing the pictures of you at my ultrasounds, and imagining what you would look like! I knew I loved you from the moment I found out about you and I didn't think I could love you any more, until the day you were born. That's when I realized what everybody says about unconditional love! Remember that Daddy adn I will always be there for you and will always love you more than you'll ever know.
A LETTER FROM DADDY
Brycen- You already have made Mommy and I so happy. Seeing you for the first time nearly made me cry with happiness. I promise to teach you everything that I know and more. My goal for you is to be a better man than your Daddy. You also can come to Mommy and I for anything because with our love, we will always help you. July 24th is most definitely teh happiest day of our lives and the fun is just beginning. We are excited to see how your puppy, Mason, welcomes you home. Thanks for making our lives complete. I love you!
Monday, September 28, 2009
Finding "Acceptance"
So, after a few months of realization and research, that cultivated in the IA City evaluation that reiterated what we have thought for some time now...I am now on the road to "acceptance." Just like when you lose someone close to you, parents of children that are diagnosed with a disability go through the stages of grief and hopefully they all come to the final stage of "acceptance." I am slowly getting there, though there are some rough days where I still wonder why and how...but those days are very few now!
Mike and I have talked many times about what we expect from Brycen over the next several years. Obviously these expectations are quite different from what we expect from Aubree, but not so much really. We expect him to listen in school, to continue to work on his speech, to act appropriately with his peers, etc. But with Brycen, we know it is going to take much longer to get to these points with a lot of extra help from his teachers, others that work with him, doctors, us, his sister, his grandparents, and his extended family and friends. Some people may feel that we are setting some of our expectations low for him. Mike and I have discussed this and due to our personalities, background, and our family dynamics...we have agreed that we want to celebrate and be surprised by each thing/word/activity that Brycen accomplishes. The other side of this, is if we set our expectations too high for him, we will experience disappointment and frustration when he doesn't meet them. The idea is to challenge him and ourselves by setting our expectations somewhere in the middle, but this is not easy considering he is still so young and we are still getting to know his strengths and weaknesses.
I have also taken a lot of time to wonder what Brycen must be feeling during all of this. We are working hard at learning to simplify our language to him, control our responses so they do not cause him to have a tantrum, be proactive when change is to come, and to just live as a family best as we can with the added stress (though it feels like this stress is less now that it has been affirmed that he needs the extra help and we were not imagining the things we were seeing). I ran across this website that gave me a little bit of insight into how he may be feeling now and in the future.
Please take a look at this, as I feel that everyone can benefit from reading this article, whether you know a child/adult with Autism or not!
http://www.ellennotbohm.com/ten_things_article.html
Mike and I have talked many times about what we expect from Brycen over the next several years. Obviously these expectations are quite different from what we expect from Aubree, but not so much really. We expect him to listen in school, to continue to work on his speech, to act appropriately with his peers, etc. But with Brycen, we know it is going to take much longer to get to these points with a lot of extra help from his teachers, others that work with him, doctors, us, his sister, his grandparents, and his extended family and friends. Some people may feel that we are setting some of our expectations low for him. Mike and I have discussed this and due to our personalities, background, and our family dynamics...we have agreed that we want to celebrate and be surprised by each thing/word/activity that Brycen accomplishes. The other side of this, is if we set our expectations too high for him, we will experience disappointment and frustration when he doesn't meet them. The idea is to challenge him and ourselves by setting our expectations somewhere in the middle, but this is not easy considering he is still so young and we are still getting to know his strengths and weaknesses.
I have also taken a lot of time to wonder what Brycen must be feeling during all of this. We are working hard at learning to simplify our language to him, control our responses so they do not cause him to have a tantrum, be proactive when change is to come, and to just live as a family best as we can with the added stress (though it feels like this stress is less now that it has been affirmed that he needs the extra help and we were not imagining the things we were seeing). I ran across this website that gave me a little bit of insight into how he may be feeling now and in the future.
Please take a look at this, as I feel that everyone can benefit from reading this article, whether you know a child/adult with Autism or not!
http://www.ellennotbohm.com/ten_things_article.html
Friday, September 25, 2009
Woo-hoo! Some progress...and a temper tantrum!
Despite pulling Brycen from school for a week for our family vacation to Florida, he did amazingly well adjusting back to his school routine this week! Mike and I are amazed at the progress Brycen has made so far, not only with language, but he showed us over vacation that he can adapt to new places and things, as well as initiate play with a peer.
Just in the last couple days, Brycen spontaneously (and in imitation) has been saying "Boom Boom" in response to a song that is on one of his videos! His teacher reports he is saying "all gone" at lunch after he has drank all of his milk He also is doing more pointing...with one finger too, not just his whole hand! He has mastered the sign for "Thank you," though he still needs to be prompted when he needs to use it. And he is also imitating "Where'd it go?" when something is hidden or looking for it...though it comes out "whe go" though we all know what it means!
While in Florida, we stayed with some fabulous friends of ours who have an 8 yr old daughter. This is the first time that Brycen has played with her and after a couple days, he actually initiated play with her! She did great playing along with him and was a wonderful example for him! As we all know, Brycen is usually oblivious to other children around him unless they are right in front of him and initiating play with him. It was so exciting to see him come over to her to want her to play with him!
Brycen did have one incident at school on Thursday where he became very upset. Brycen is very routine oriented (as most children with an ASD are) and he becomes very upset and will throw a tantrum when parts of his routine that he loves or relies on are interrupted. We have found that if we are in a different environment (such as in Florida or at grandparent's houses), he will more easily adjust to a change, but if the change is in his typical environment, this will most likely result in a tantrum. Anyway, the teacher told Mike that they had to switch to a different place in the classroom to do greeting circle in the morning because there were some visitors there using the space they normally use. Brycen did not understand this change and became very upset, yelling and throwing things. We've determined that it was not the change in place that upset him, but now that he enjoys greeting circle in the morning, he probably thought they were not going to do it at all, which would have been completely out of the routine! The teacher has decided to adapt to this need of his and now they are going to do greeting circle in the two different places, switching every-other day to show him that it will still happen. What a wonderful teacher to notice that this will help him in the future!
On the other side of things, Brycen has begun grinding his teeth more often and has been chewin on everything. These types of sensory and compulsive habits are common among children with Autism. We try to give him something else to chew on to distract him, but this doesn't seem to be helping. These are some of the compulsive things that eventually medication may help, but I still feel that he is too young to start on medications but of course I don't want him to damage his teeth either, so we'll have to keep a close eye on this one.
Just in the last couple days, Brycen spontaneously (and in imitation) has been saying "Boom Boom" in response to a song that is on one of his videos! His teacher reports he is saying "all gone" at lunch after he has drank all of his milk He also is doing more pointing...with one finger too, not just his whole hand! He has mastered the sign for "Thank you," though he still needs to be prompted when he needs to use it. And he is also imitating "Where'd it go?" when something is hidden or looking for it...though it comes out "whe go" though we all know what it means!
While in Florida, we stayed with some fabulous friends of ours who have an 8 yr old daughter. This is the first time that Brycen has played with her and after a couple days, he actually initiated play with her! She did great playing along with him and was a wonderful example for him! As we all know, Brycen is usually oblivious to other children around him unless they are right in front of him and initiating play with him. It was so exciting to see him come over to her to want her to play with him!
Brycen did have one incident at school on Thursday where he became very upset. Brycen is very routine oriented (as most children with an ASD are) and he becomes very upset and will throw a tantrum when parts of his routine that he loves or relies on are interrupted. We have found that if we are in a different environment (such as in Florida or at grandparent's houses), he will more easily adjust to a change, but if the change is in his typical environment, this will most likely result in a tantrum. Anyway, the teacher told Mike that they had to switch to a different place in the classroom to do greeting circle in the morning because there were some visitors there using the space they normally use. Brycen did not understand this change and became very upset, yelling and throwing things. We've determined that it was not the change in place that upset him, but now that he enjoys greeting circle in the morning, he probably thought they were not going to do it at all, which would have been completely out of the routine! The teacher has decided to adapt to this need of his and now they are going to do greeting circle in the two different places, switching every-other day to show him that it will still happen. What a wonderful teacher to notice that this will help him in the future!
On the other side of things, Brycen has begun grinding his teeth more often and has been chewin on everything. These types of sensory and compulsive habits are common among children with Autism. We try to give him something else to chew on to distract him, but this doesn't seem to be helping. These are some of the compulsive things that eventually medication may help, but I still feel that he is too young to start on medications but of course I don't want him to damage his teeth either, so we'll have to keep a close eye on this one.
Tuesday, September 1, 2009
Outcome of Iowa City evaluation
Mike, Brycen and I visited the Child Psychiatry department at U of I Children's Hospital yesterday for a full evaluation by specialists that work with Autism. Brycen had individual evaluations completed by a speech clinician, resident physician, educational consultant, and psychologist with the overview completed by a Staff Child Psychiatrist. The diagnosis from the compilations of all of these evaluations was "Autistic Disorder with a likelihood of mental retardation." This was no surprise to us as he has already had the informal diagnosis of Autistic Disorder from Child Health Speciality Clinics in Fort Dodge. The "likelihood of mental retardation" stems from the fact they cannot given an accurate IQ test to a 3 yr old, but what they did determine is that his cognitive skills/development are behind those of the "typical" 3 yr old which then is "labeled" as MR. To us, this is just a label that will be re-evaluated in 2 years to get a more accurate diagnosis with his cognitive development. There was no question that his developmental skills are delayed, and he meets the criteria for "Autistic Disorder."
The combination of these two diagnosis will qualify him for the Intellectual Disabilities Waiver (formerly known as the Mental Retardation Waiver) which will provide Medicaid insurance for 1:1 therapy and further evaluations and appointments. He/we may also qualify for respite services as well as some other services that are available under the ID Waiver. The most important part is the Medicaid Insurance as our private insurance does not cover the majority of these services and will provide financial relief to us in the future for what he needs.
A written report will be provided within the next two weeks to us, his primary physician, AEA, and the school district with recommendations on the treatment plan specific to his needs. The U of I team has compared Brycen's communication skills to those of a 12-14 month old, which is comparable to where AEA rated him a few months ago. Though his fine and gross motor skills are similar to that of a 2 1/2 year old (how many 3 year olds can hit a ball pitched to them)!
If there is any other information in the written report that I feel is important for everybody to know, I will make sure to post it at the time we receive it. Otherwise, we don't feel medications can help with any of the symptoms he is showing at this time, as they rarely give medications to 3 year olds anyway. We were given permission to double the dose of Melatonin we were giving him each night so hopefully we will see a better sleep pattern from the higher dose. He will be starting 1:1 sessions with Kelsi (a student at BV) this week on Tues and Thurs from 3-4pm to help out with his communication skills and other pre-school skills. We are looking at requesting a change to his IEP to increase his 1:1 speech therapy from the school district after we receive the recommendations in the written report. Before looking into any additional therapy outside of school and Kelsi, we are going to wait and see how he progresses with these and re-assess in a couple months.
Brycen was a real trooper yesterday during all of these evaluations and meetings we had with the specialists! He adjusted well to the different people and obvious changes in his routine and not only showed us his strengths, but also the areas he needs help. He gave the specialists a clear picture of who he is on a daily basis, which helped them to give an accurate diagnosis, and he was able to "play" while doing so! Though I think he would have preferred to be at school!
He adjusted back to his new routine this morning of getting ready and going to school with no problems. He is our precious little boy that deserves all the love and help that we can give him! Thank you to everybody that has supported us this far and will continue to as we keep on our path to success with him!
The combination of these two diagnosis will qualify him for the Intellectual Disabilities Waiver (formerly known as the Mental Retardation Waiver) which will provide Medicaid insurance for 1:1 therapy and further evaluations and appointments. He/we may also qualify for respite services as well as some other services that are available under the ID Waiver. The most important part is the Medicaid Insurance as our private insurance does not cover the majority of these services and will provide financial relief to us in the future for what he needs.
A written report will be provided within the next two weeks to us, his primary physician, AEA, and the school district with recommendations on the treatment plan specific to his needs. The U of I team has compared Brycen's communication skills to those of a 12-14 month old, which is comparable to where AEA rated him a few months ago. Though his fine and gross motor skills are similar to that of a 2 1/2 year old (how many 3 year olds can hit a ball pitched to them)!
If there is any other information in the written report that I feel is important for everybody to know, I will make sure to post it at the time we receive it. Otherwise, we don't feel medications can help with any of the symptoms he is showing at this time, as they rarely give medications to 3 year olds anyway. We were given permission to double the dose of Melatonin we were giving him each night so hopefully we will see a better sleep pattern from the higher dose. He will be starting 1:1 sessions with Kelsi (a student at BV) this week on Tues and Thurs from 3-4pm to help out with his communication skills and other pre-school skills. We are looking at requesting a change to his IEP to increase his 1:1 speech therapy from the school district after we receive the recommendations in the written report. Before looking into any additional therapy outside of school and Kelsi, we are going to wait and see how he progresses with these and re-assess in a couple months.
Brycen was a real trooper yesterday during all of these evaluations and meetings we had with the specialists! He adjusted well to the different people and obvious changes in his routine and not only showed us his strengths, but also the areas he needs help. He gave the specialists a clear picture of who he is on a daily basis, which helped them to give an accurate diagnosis, and he was able to "play" while doing so! Though I think he would have preferred to be at school!
He adjusted back to his new routine this morning of getting ready and going to school with no problems. He is our precious little boy that deserves all the love and help that we can give him! Thank you to everybody that has supported us this far and will continue to as we keep on our path to success with him!
Friday, August 28, 2009
Dateline special on Autism on Sunday (8/30) night
Just wanted to pass on a tidbit of information Brycen's teacher just called me about! Matt Lauer is doing a 1 hour special on the controversy of vaccines and Autism this Sunday night on Dateline. Though I do not feel that vaccines had a role in Brycen's Autism, I do think there is merit to this in some cases and feel it is definitely worth watching! Even if you may disagree with the topic of this hour long special, I still think watching this may be very useful for those who would like to know more about autism as I'm sure the people being interviewed share more than just details about the vaccine controversy.
http://insidedateline.msnbc.msn.com/archive/2009/08/25/2044554.aspx
http://insidedateline.msnbc.msn.com/archive/2009/08/25/2044554.aspx
One week of school down, many more to go!
What a fabulous first week of school for Brycen! He has adjusted so much better than we ever thought he would and we have definitely realized starting school is the best decision we have made for him so far.
Here is a rundown of the progress he has made in the last week:
-He is spontaneously asking for juice "ju" by going to the fridge and saying the word on his own
-He pointed to the changing table at school when he had a dirty diaper to tell the teachers he needed changed!
-He carries and tries to hang up his backpack each day at school and at home (this afternoon without any prompts too!)
-He is willingly stopping at the "work" table when he gets to school to check in his name tag and lunch card, though he needs hand-over-hand to actually put the cards in the baskets
-After 4 days of protesting the "greeting circle," he actually participated today! The teacher said he sat down and very discreetly waved his red flag...huge progress in just one week!
-He is not eating very well at school and then comes home and climbs into his booster wanting a snack right away. We are trying to determine if it is the noise or distractions in the cafeteria or if he doesn't like the food. We'll try some cold lunches next week!
-He has been imitating the word school- comes out like "hoo" but we know what it means and it's another word approximation to add to the list!
-He has been washing his hands and picking up his toys way more willingly than before since he has these expectations all day long at school also.
-We have not had a huge temper tantrum all week and he even slept all night on two different nights this last week!
I am excited to see what progress the upcoming weeks will bring! These things may seem very small to other parents of 3 year olds, but to our family, these are signs of the right direction and bring so much excitement and many smiles to our face!
Here is a rundown of the progress he has made in the last week:
-He is spontaneously asking for juice "ju" by going to the fridge and saying the word on his own
-He pointed to the changing table at school when he had a dirty diaper to tell the teachers he needed changed!
-He carries and tries to hang up his backpack each day at school and at home (this afternoon without any prompts too!)
-He is willingly stopping at the "work" table when he gets to school to check in his name tag and lunch card, though he needs hand-over-hand to actually put the cards in the baskets
-After 4 days of protesting the "greeting circle," he actually participated today! The teacher said he sat down and very discreetly waved his red flag...huge progress in just one week!
-He is not eating very well at school and then comes home and climbs into his booster wanting a snack right away. We are trying to determine if it is the noise or distractions in the cafeteria or if he doesn't like the food. We'll try some cold lunches next week!
-He has been imitating the word school- comes out like "hoo" but we know what it means and it's another word approximation to add to the list!
-He has been washing his hands and picking up his toys way more willingly than before since he has these expectations all day long at school also.
-We have not had a huge temper tantrum all week and he even slept all night on two different nights this last week!
I am excited to see what progress the upcoming weeks will bring! These things may seem very small to other parents of 3 year olds, but to our family, these are signs of the right direction and bring so much excitement and many smiles to our face!
Friday, August 21, 2009
First day of Pre-school
The wait is finally over! Mommy & Aubree took Brycen to school this morning at 8:30. I learned a lesson to not park within sight of the playground...this resulted in a backpack thrown on the ground and Brycen refusing to get up and walk into the school until he was reminded of the fish in the classroom. Not much acknowledgment when we said goodbye to him either...but I honestly didn't expect him to get upset or to even care that I was leaving as they have so many cool toys and a huge fish tank!
After coming home, Aubree just wasn't sure what to do by herself. She sat in her rocker for a few minutes and then slowly started to play with a couple toys, but would frequently come over to me where I was working on the computer to check in with me. I did find out just how productive I can be with work with only one child at home...I accomplished all that I wanted with some time to spare before having to go back to pick up Brycen. Daddy was able to join us to pick him back up at 11:00 since they only had 1/2 day for the first day. Brycen greeted us with a huge smile...he was walking around outside with one of the IA's after the other children had gotten on the bus. He even wanted the teacher to walk with us to the door to leave!
The teachers told us he picked up toys well, fed the fish, and ate breakfast with them with no hesitation. There are only 5 children in the classroom with different special needs so I have no doubt that Brycen will get plenty of 1:1 attention for what he needs, as well as he will learn to socialize in a small group with others.
We are all looking forward to next week when he will have 5 full days!
After coming home, Aubree just wasn't sure what to do by herself. She sat in her rocker for a few minutes and then slowly started to play with a couple toys, but would frequently come over to me where I was working on the computer to check in with me. I did find out just how productive I can be with work with only one child at home...I accomplished all that I wanted with some time to spare before having to go back to pick up Brycen. Daddy was able to join us to pick him back up at 11:00 since they only had 1/2 day for the first day. Brycen greeted us with a huge smile...he was walking around outside with one of the IA's after the other children had gotten on the bus. He even wanted the teacher to walk with us to the door to leave!
The teachers told us he picked up toys well, fed the fish, and ate breakfast with them with no hesitation. There are only 5 children in the classroom with different special needs so I have no doubt that Brycen will get plenty of 1:1 attention for what he needs, as well as he will learn to socialize in a small group with others.
We are all looking forward to next week when he will have 5 full days!
Tuesday, August 18, 2009
Curious about your thoughts...
I've posted many links to sites that describe Autism, but I realized I have yet to post a link describing "regressive autism." This is where Brycen's autism falls...he developed within the typical range until about 2 years old, and then all of a sudden he starting "losing" words, social skills, and eye contact. Just like many other kids, he always had different "quirks" that was a symptom of Autism...lining up toys, seemed to ignore us when we called his name, fascination with ceiling fans, OCD behavior, etc. But unlike those other kids that also display this early on, Brycen's "quirks" became more profound after the age of 2 and his obsessions last longer and disturb his and/or our daily lives. Some people still have the perception that all Autism starts at birth...children with autism are mute, never speak or babble, seem oblivious to the entire world, are content just sitting there staring into space, won't hug or kiss, and all other "stigma" symptoms. This is far from the truth! That is why it is called a spectrum disorder...there are all types and symptoms of Autism...including children that do display the symptoms I listed above.
http://en.wikipedia.org/wiki/Regressive_autism
So, here is the question I propose to you. Having a child with any delay or disability is difficult as we all know...whether this was known already when the child was still in utero, shortly after birth, or 2 years down the road. Each parent grieves the loss of the "typical" child they thought they were having no matter when they found out about the child's delay or disability. Do you feel that it is more difficult to find out before your child was born that they would have a disability or to find out a few years down the road after they had already began to develop typically? There are no wrong or right answers to this question...but I am very curious on how others feel about this.
http://en.wikipedia.org/wiki/Regressive_autism
So, here is the question I propose to you. Having a child with any delay or disability is difficult as we all know...whether this was known already when the child was still in utero, shortly after birth, or 2 years down the road. Each parent grieves the loss of the "typical" child they thought they were having no matter when they found out about the child's delay or disability. Do you feel that it is more difficult to find out before your child was born that they would have a disability or to find out a few years down the road after they had already began to develop typically? There are no wrong or right answers to this question...but I am very curious on how others feel about this.
Monday, August 17, 2009
A Turning Point?
This week started with Brycen's last speech therapy appointment at home and will end with the start of pre-school on Friday! The speech therapy went fantastic this morning and was one of his best sessions ever...we hope his first day at school on Friday will go just as well!
Here's a rundown of his great accomplishments during his therapy session today:
-He became excited when he looked out the door and saw the therapist and the Early Childhood Coordinator arriving (he used to ignore, hit, yell etc at them)
-He sat down at his kid's table willingly and looked through a book about colors with very minimal resistance.
-When we asked him to point to the kitty-cat in the book, he matter of factly said "I did!" (the only phrase he spontaneously says), even though he didn't...he received tons of praise anyway!
-He waited patiently for next toy to come out with physical prompting to put his hands in lap
-He spontaneously said "choo choo" when he saw the puzzle piece of the train
-He would sign "please" with a verbal imitation of the word also spontaneously (after a minute or so of waiting for him)
-He took turns with the bubbles outside...also spontaneously signed "please" and "more"
-He transitioned from activity to activity with NO resistance!!! (This is huge as just a couple of months ago, he would not allow this if he was enjoying an activity too much).
-These are the words he imitated (considered word approximations as he does not say all the sounds, but we can decipher it still) multiple times throughout 1 hour session: boat, car, help, cracker, more & bubbles
-Waved and said "bye" to them when they left with verbal prompt from me
When comparing these to the first few sessions back in the winter, huge steps have been made! We went multiple months with very little or no progress and Mike & I really weren't sure what to do...but it seems like we have reached a turning point! We have high hopes that going to school will encourage the social interaction and following directions...and we are encouraged by the 1:1 speech therapy! Unfortunately he will not be receiving this from the school district at home anymore, so we are looking into other possibilities that our health insurance may cover. According to BCBS, the doctors will need to recommend the 1:1 speech in order for them to cover it, and they also limit the number of sessions covered which may not be as much as Brycen needs. I try not to dwell on the financial aspect of all of this and just focus on what he needs and what is available to us right now...but my recent conversations with DHS and Social Security regarding Medicaid insurance has not been very encouraging.
Although Brycen's speech, nonverbal communication, and social skills are still far behind the average 3 year old, the MOST important thing is he has made progress! And we have no doubt that this progress is going to be even better once school starts!
Here's a rundown of his great accomplishments during his therapy session today:
-He became excited when he looked out the door and saw the therapist and the Early Childhood Coordinator arriving (he used to ignore, hit, yell etc at them)
-He sat down at his kid's table willingly and looked through a book about colors with very minimal resistance.
-When we asked him to point to the kitty-cat in the book, he matter of factly said "I did!" (the only phrase he spontaneously says), even though he didn't...he received tons of praise anyway!
-He waited patiently for next toy to come out with physical prompting to put his hands in lap
-He spontaneously said "choo choo" when he saw the puzzle piece of the train
-He would sign "please" with a verbal imitation of the word also spontaneously (after a minute or so of waiting for him)
-He took turns with the bubbles outside...also spontaneously signed "please" and "more"
-He transitioned from activity to activity with NO resistance!!! (This is huge as just a couple of months ago, he would not allow this if he was enjoying an activity too much).
-These are the words he imitated (considered word approximations as he does not say all the sounds, but we can decipher it still) multiple times throughout 1 hour session: boat, car, help, cracker, more & bubbles
-Waved and said "bye" to them when they left with verbal prompt from me
When comparing these to the first few sessions back in the winter, huge steps have been made! We went multiple months with very little or no progress and Mike & I really weren't sure what to do...but it seems like we have reached a turning point! We have high hopes that going to school will encourage the social interaction and following directions...and we are encouraged by the 1:1 speech therapy! Unfortunately he will not be receiving this from the school district at home anymore, so we are looking into other possibilities that our health insurance may cover. According to BCBS, the doctors will need to recommend the 1:1 speech in order for them to cover it, and they also limit the number of sessions covered which may not be as much as Brycen needs. I try not to dwell on the financial aspect of all of this and just focus on what he needs and what is available to us right now...but my recent conversations with DHS and Social Security regarding Medicaid insurance has not been very encouraging.
Although Brycen's speech, nonverbal communication, and social skills are still far behind the average 3 year old, the MOST important thing is he has made progress! And we have no doubt that this progress is going to be even better once school starts!
Friday, August 7, 2009
Research, research...and more research
Friday nights have become my time to research everything I can about Autism...the kids are in bed and Mike is at work until after 10, so I take full advantage of the quiet to compare websites, information, and statistics.
I had the privilege of getting to know a very knowledgeable mother yesterday at a new referral meeting for work. She is a special education teacher and has a middle-school aged son with Autism. We had a great talk about similarities between our children, how we have accepted change in our lives, our family, and of course therapy. I'm not sure I will ever have a need to join a support group as it seems like these wonderful parents and grandparents that I meet with are my support...they have "been there, done that" and can give me the best advice out of anyone in my life right now. I don't usually bring up the situation with Brycen intentionally as I am there to do my job and support them with our services...but about 75% of my meetings have included the parents asking me what my experience is with children with disabilities and then about half of those parents ask if I have a child with a disability. This is where I take a deep breath...always starting with a brief run-down of my work experience and education, then ending with "my 3 yr old son has been diagnosed with Autism and is waiting for his official diagnosis and suggested treatment plan from the IA City team of specialists on Aug 31."
Now, some of the kids on my caseload have Aspergers, Rett Syndrome, and a few fall under classic autism....but quite a few of the kids have a variety of diagnoses such as what is considered Mild Autism/PDD-NOS (which I personally feel this is where Brycen falls, but will know for sure in a few weeks), ADHD, Epilepsy (which has a very high correlation with Autism), OCD, and MR. Each of these children are completely different...different rates of speech, different ways to communicate, different ways to play, etc. I cannot stress enough that there are no two children that are alike on the Autism Spectrum...which is what makes it so much more difficult to diagnose and treat and educate about.
I attached yet another website I found that gives some great background information! I really don't feel there is enough research one can read when faced with this disorder. I recently ordered several books from half.com to have on hand for those that are interested (after Mike and I read them of course). I will definitely be sending a couple to my wonderful Grandma in Waukon, who has taken such an interest in how this disorder is affecting Brycen and our entire family!
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
I had the privilege of getting to know a very knowledgeable mother yesterday at a new referral meeting for work. She is a special education teacher and has a middle-school aged son with Autism. We had a great talk about similarities between our children, how we have accepted change in our lives, our family, and of course therapy. I'm not sure I will ever have a need to join a support group as it seems like these wonderful parents and grandparents that I meet with are my support...they have "been there, done that" and can give me the best advice out of anyone in my life right now. I don't usually bring up the situation with Brycen intentionally as I am there to do my job and support them with our services...but about 75% of my meetings have included the parents asking me what my experience is with children with disabilities and then about half of those parents ask if I have a child with a disability. This is where I take a deep breath...always starting with a brief run-down of my work experience and education, then ending with "my 3 yr old son has been diagnosed with Autism and is waiting for his official diagnosis and suggested treatment plan from the IA City team of specialists on Aug 31."
Now, some of the kids on my caseload have Aspergers, Rett Syndrome, and a few fall under classic autism....but quite a few of the kids have a variety of diagnoses such as what is considered Mild Autism/PDD-NOS (which I personally feel this is where Brycen falls, but will know for sure in a few weeks), ADHD, Epilepsy (which has a very high correlation with Autism), OCD, and MR. Each of these children are completely different...different rates of speech, different ways to communicate, different ways to play, etc. I cannot stress enough that there are no two children that are alike on the Autism Spectrum...which is what makes it so much more difficult to diagnose and treat and educate about.
I attached yet another website I found that gives some great background information! I really don't feel there is enough research one can read when faced with this disorder. I recently ordered several books from half.com to have on hand for those that are interested (after Mike and I read them of course). I will definitely be sending a couple to my wonderful Grandma in Waukon, who has taken such an interest in how this disorder is affecting Brycen and our entire family!
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
Sunday, July 26, 2009
Melatonin update
We have used Melatonin (3mg tab) every night for the last 8 nights. Knowing that it may take weeks to work (if it works at all), we are very happy with the progress so far. On the second night, we noticed he became sleepy faster than without. He has fallen asleep faster and without as much whining since that second night. He has woken during the night 4 times and has slept through the night (9 hours+) 4 times. We are not getting too excited yet as he does have these spurts every once in awhile where he will sleep through for a week and then he has weeks of not sleeping through at all.
As for behaviors during the day following the last 3 nights in a row of sleeping through the night...have not decreased at all. We still find ourselves constantly redirecting him away from tackling, headbutting, and pulling on Aubree, wrestling and throwing toys, spitting, his constant self-stimulating behaviors and more. The good news is that over the last couple weeks, we have not had to strap him into the high chair for time-outs (I hope I didn't just jinx this!). He seems to get the point if we sit him on the couch or on his bed and block him so he can't get down. Then it all starts again 5 minutes later... I guess 5 minutes of good behavior every couple hours is pretty good for a 3 year old in this situation! I'm looking forward to school starting in a few weeks and have high hopes that pre-school will have a positive impact on him and our family!
As for behaviors during the day following the last 3 nights in a row of sleeping through the night...have not decreased at all. We still find ourselves constantly redirecting him away from tackling, headbutting, and pulling on Aubree, wrestling and throwing toys, spitting, his constant self-stimulating behaviors and more. The good news is that over the last couple weeks, we have not had to strap him into the high chair for time-outs (I hope I didn't just jinx this!). He seems to get the point if we sit him on the couch or on his bed and block him so he can't get down. Then it all starts again 5 minutes later... I guess 5 minutes of good behavior every couple hours is pretty good for a 3 year old in this situation! I'm looking forward to school starting in a few weeks and have high hopes that pre-school will have a positive impact on him and our family!
Saturday, July 18, 2009
MORE RESEARCH
I have been pondering giving Brycen Melatonin supplements at night to help with his sleep. He has never been the best sleeper...but now it is making sense as to why he will wake around 2 or 3am and seem like he is ready for the day. If he does sleep "through the night," it usually doesn't last past 5-5:30am. I have messed with his bedtime and routine, activities prior to bed, decreased sugar in his diet, and shortened & lengthened nap time to try to find an easier solution to no avail. So, I wanted to research the use of Melatonin and children with Autism, but was lacking time and patience in the last few weeks to sort through all the articles on the internet. Mike has a wonderful and caring high-school classmate (Virginia) that did this for me...without even asking her! Neither Brycen nor I have even met her and it has been years since Mike has talked to her, so I am very grateful for her help with this and the interest she has taken with Brycen!
So, tonight is the first night! Right now, I only have tabs that I will need to crush and give him in pudding, so I am hoping he goes for that. If it seems like it works (may take weeks to be able to tell) I plan to order the liquid that I can add to his juice with bedtime snack. I think if we can extend his sleep during the night, not only will he be more rested and it may decrease the frequent behaviors during the day, but we will definitely be more rested and will have more patience to deal with those frequent behaviors during the day! WISH US LUCK!
http://www.autismspeaks.org/science/science_news/melatonin_supplements.php
http://www.forbes.com/feeds/hscout/2009/07/17/hscout629072.html
http://www.autism-society.org/site/PageServer?pagename=life_fam_stress
So, tonight is the first night! Right now, I only have tabs that I will need to crush and give him in pudding, so I am hoping he goes for that. If it seems like it works (may take weeks to be able to tell) I plan to order the liquid that I can add to his juice with bedtime snack. I think if we can extend his sleep during the night, not only will he be more rested and it may decrease the frequent behaviors during the day, but we will definitely be more rested and will have more patience to deal with those frequent behaviors during the day! WISH US LUCK!
http://www.autismspeaks.org/science/science_news/melatonin_supplements.php
http://www.forbes.com/feeds/hscout/2009/07/17/hscout629072.html
http://www.autism-society.org/site/PageServer?pagename=life_fam_stress
The Grieving Process
We have been blessed with wonderful friends and family that have been supportive as we have learned about Brycen's diagnosis and shared it with others! Many people have either commented on here, through email, or on Facebook about Brycen and shared their thoughts, opinions, and offering of support. We appreciate everybody's understanding as we move though the beginning of this and we have tried to be as objective as possible when reading the comments and opinions from people.
After reading through all the entries and comments once again today, I realized that I probably have not been sharing enough of the good things about Brycen! I don't want people to feel that I am only focusing on the negative things, but as this whole situation is so new to us, I think that is a part of the grieving process. Trust me, I know the positives and I share them frequently with people as they happen! The first thing I shared with Mike when he came home for dinner break today was about Brycen's fabulous time at the park this afternoon and how it seemed like he was actually socially interacting with another little girl there. I almost always call my Mom, my sister, or share it on Facebook when he imitates another word or has a good day. So, of course there are positives, but just like many other human beings in this world, I tend to dwell on the negatives more in times of stress.
Just like it is normal to grieve the death of a friend or family member, we are in the process of grieving the "loss" of a "typical" child. (And yes, there is a such thing as a "typical" child...this is a child that has achieved normal development for their age and reached all milestones within the average range given for each. If there was not a "typical" child, then there would be no way to determine if a child needs help in a specific area, and therefore many therapies and options would not be available to parents to assist in the child's growth in these areas.) Everybody's grieving is different...the length, the severity, the stages...but all parents (and many other people in the child's life) in these situations grieve someway, somehow. I have no idea where I am right now in the process, but I know for a fact that I have not reached "acceptance" and that is ok. What I do know is that we are being the best parents that we know how to be to Brycen! And he is behaving and trying the best way he knows how to at this time! Believe me in saying that is a difficult statement to say after a very long and exhausting week!
After reading through all the entries and comments once again today, I realized that I probably have not been sharing enough of the good things about Brycen! I don't want people to feel that I am only focusing on the negative things, but as this whole situation is so new to us, I think that is a part of the grieving process. Trust me, I know the positives and I share them frequently with people as they happen! The first thing I shared with Mike when he came home for dinner break today was about Brycen's fabulous time at the park this afternoon and how it seemed like he was actually socially interacting with another little girl there. I almost always call my Mom, my sister, or share it on Facebook when he imitates another word or has a good day. So, of course there are positives, but just like many other human beings in this world, I tend to dwell on the negatives more in times of stress.
Just like it is normal to grieve the death of a friend or family member, we are in the process of grieving the "loss" of a "typical" child. (And yes, there is a such thing as a "typical" child...this is a child that has achieved normal development for their age and reached all milestones within the average range given for each. If there was not a "typical" child, then there would be no way to determine if a child needs help in a specific area, and therefore many therapies and options would not be available to parents to assist in the child's growth in these areas.) Everybody's grieving is different...the length, the severity, the stages...but all parents (and many other people in the child's life) in these situations grieve someway, somehow. I have no idea where I am right now in the process, but I know for a fact that I have not reached "acceptance" and that is ok. What I do know is that we are being the best parents that we know how to be to Brycen! And he is behaving and trying the best way he knows how to at this time! Believe me in saying that is a difficult statement to say after a very long and exhausting week!
Thursday, July 16, 2009
A word from Dad
Trying to think of how to organize my thoughts so I could actually write a post has been my challenge. Here is my first ever attempt...
I think myself and my family as being "chosen". My whole life I always wondered why am I here or what am I doing? Now I can see what I'm needed for and why I'm here.
When I was a young kid I thought of fatherhood as going to work and providing for your family, those thoughts were so old fashioned and wrong. The most important thing I do as a Father starts with love, I love my wife and my kids but more importantly I tell them I love them everyday. That's why I have been "chosen" to have this family, to be the ultimate loving father and husband.
At work the other day I overheard a customer talking about how they were lucky to have kids that were healthy and well behaved. That got me thinking---sorry to say your not the lucky one I am. I have the "chosen" family, the adventures we are going to take will have much more meaning, we will overcome more obstacles, and do some of that most amzing things. On the outside it may look different but this is the "chosen" family. Not every family can be "chosen" so we are the lucky one's because we have been "chosen".
Mike
I think myself and my family as being "chosen". My whole life I always wondered why am I here or what am I doing? Now I can see what I'm needed for and why I'm here.
When I was a young kid I thought of fatherhood as going to work and providing for your family, those thoughts were so old fashioned and wrong. The most important thing I do as a Father starts with love, I love my wife and my kids but more importantly I tell them I love them everyday. That's why I have been "chosen" to have this family, to be the ultimate loving father and husband.
At work the other day I overheard a customer talking about how they were lucky to have kids that were healthy and well behaved. That got me thinking---sorry to say your not the lucky one I am. I have the "chosen" family, the adventures we are going to take will have much more meaning, we will overcome more obstacles, and do some of that most amzing things. On the outside it may look different but this is the "chosen" family. Not every family can be "chosen" so we are the lucky one's because we have been "chosen".
Mike
Wednesday, July 15, 2009
Looking for "What to Expect when you parent a child with Autism"
I don't know why I tend to set myself up for extreme emotions...but for some reason I decided to pull out my "What to Expect- Toddler" book last night and look up the "normal" 36 month old. I'm sure you all know how that turned out. I really wish there was a "What to Expect" about autism, but unfortunately each child on the spectrum is so different that just isn't possible.
Rarely do I ever fall asleep when I really want to at night. Usually I lay awake for an hour or longer, thinking back to the days trials with Brycen (in addition to a 1 yr old) and trying to determine what the next day may include. Last night, I was experiencing many emotions following a couple very turbulent days with Brycen and a few other things going on in my life. I frequently plead with God at night to make it a little easier...then I wonder if there really is a God because if there is, he must know that I don't think I am strong enough to handle this for the rest of my life (please don't preach to me about there being a God in the comments!). My mind kept wandering to Brycen's future and how no one can tell me what it will be like, unlike how a parent of a "typical" child can just pick up their "What to Expect" book and read what they should expect over the next several months. Just like all parents, I want the best for my son...but now the best that he may have may not be the best that my daughter will have. I'm trying to be honest with myself that their futures are going to be very, very different.
Will Brycen ever be able to attend school in the "normal" classroom? Will his language ever develop to the point where I can have a conversation with him? Will he have the desire or ability to date? Will he be able to go to college? Will he be able to live on his own or will he need us or a paid worker to help him? Will he get married and have children if he so chooses? Will his family and friends always accept him for who he is? Will he ever comprehend potty training?
These are all things that I never thought of when I was pregnant with him or in the first two years, but now these are the questions that fill my mind when I think of his future.
Now I'm sure most of you reading this are tearing up a little...I am too! I cry just about every day now about him and wondering if I am being the best parent I can be. All I do know right now, is we love our son and would do anything for him and will never leave him to fight this on his own!
Rarely do I ever fall asleep when I really want to at night. Usually I lay awake for an hour or longer, thinking back to the days trials with Brycen (in addition to a 1 yr old) and trying to determine what the next day may include. Last night, I was experiencing many emotions following a couple very turbulent days with Brycen and a few other things going on in my life. I frequently plead with God at night to make it a little easier...then I wonder if there really is a God because if there is, he must know that I don't think I am strong enough to handle this for the rest of my life (please don't preach to me about there being a God in the comments!). My mind kept wandering to Brycen's future and how no one can tell me what it will be like, unlike how a parent of a "typical" child can just pick up their "What to Expect" book and read what they should expect over the next several months. Just like all parents, I want the best for my son...but now the best that he may have may not be the best that my daughter will have. I'm trying to be honest with myself that their futures are going to be very, very different.
Will Brycen ever be able to attend school in the "normal" classroom? Will his language ever develop to the point where I can have a conversation with him? Will he have the desire or ability to date? Will he be able to go to college? Will he be able to live on his own or will he need us or a paid worker to help him? Will he get married and have children if he so chooses? Will his family and friends always accept him for who he is? Will he ever comprehend potty training?
These are all things that I never thought of when I was pregnant with him or in the first two years, but now these are the questions that fill my mind when I think of his future.
Now I'm sure most of you reading this are tearing up a little...I am too! I cry just about every day now about him and wondering if I am being the best parent I can be. All I do know right now, is we love our son and would do anything for him and will never leave him to fight this on his own!
Friday, July 10, 2009
Joining the Club
I've been thinking about this post for some time and how I wanted to word some of these feelings and emotions I have. Part of my job responsibilities are to visit the families and children on my caseload to update their paperwork every year. There are quite a few children that have been diagnosed with an ASD that I supervise and lately I find myself comparing Brycen's "quirks" with theirs at these visits (of course to myself, not out loud). On a visit a few weeks ago, a mother said "Don't you feel like you have joined a club?" after I finally got the nerve to share our situation with her at the end of the meeting. After thinking about this on the drive home, I realized that explains a lot of how I feel right now. I have officially joined a "club" of parents, where the dues are extremely high (both financially and emotionally), no choice of joining, and it's a "club" I will be a member of for the rest of my life.
I have had a handful of people already tell me that they "know how I feel." I know they are saying this to be nice, because they care, or because they just aren't sure what to say to me. My response to them has been very honest in that they have no clue how I feel since not one of these people have a child that has been diagnosed with an ASD, or any developmental disorder for that matter. I'm not being mean at all, just being honest. Just because you may know a child, or work with a child, or be the aunt/uncle/grandparent/cousin of a child with an ASD...you still have no idea how it feels to raise a child with an ASD 24 hours a day. Just like I have no idea how a parent of a child with a life-threatening illness or with physical limitations may feel.
I also have heard "I'm sorry" from a few people in response to my explanation of Brycen's illness. I'm sure they say this for the same reasons as the other people, but once again I am going to be honest with them. Brycen is not dying...he does not have an illness that is life-threatening. To me, "I'm sorry" is something you say to someone that has just experienced or is going to experience death or a tragedy. I am DEFINITELY not sorry to have been chosen to be Brycen's mom, nor am I sorry that he has an ASD. I am grateful that overall he is a healthy and happy child and he is still the Brycen I gave birth to almost 3 years ago, despite developing some "quirks" along the way.
I guess what I am trying to say is that I am only human and am experiencing a lot of emotions attached to this situation that most of you will never understand... and that's OK. I don't expect you to understand how I feel or to know the exact thing to say to me in conversation about it. I have yet to determine if it is easier that I had knowledge and experience with Autism prior to Brycen's diagnosis. In some ways, I think it is easier because I understand the medical part of the diagnosis, as well as I'm aware of the therapies and treatments that are available. But then I know that my previous experience with Autism may prevent me from having as much hope for some kind of recovery of language or social skills that Brycen will need in order to live independently and go to college some day. I am having a hard time separating my work life/knowledge from my personal life/experience. I guess this will be a part of the grieving process I will go through before I can fully accept how our lives have changed.
I have had a handful of people already tell me that they "know how I feel." I know they are saying this to be nice, because they care, or because they just aren't sure what to say to me. My response to them has been very honest in that they have no clue how I feel since not one of these people have a child that has been diagnosed with an ASD, or any developmental disorder for that matter. I'm not being mean at all, just being honest. Just because you may know a child, or work with a child, or be the aunt/uncle/grandparent/cousin of a child with an ASD...you still have no idea how it feels to raise a child with an ASD 24 hours a day. Just like I have no idea how a parent of a child with a life-threatening illness or with physical limitations may feel.
I also have heard "I'm sorry" from a few people in response to my explanation of Brycen's illness. I'm sure they say this for the same reasons as the other people, but once again I am going to be honest with them. Brycen is not dying...he does not have an illness that is life-threatening. To me, "I'm sorry" is something you say to someone that has just experienced or is going to experience death or a tragedy. I am DEFINITELY not sorry to have been chosen to be Brycen's mom, nor am I sorry that he has an ASD. I am grateful that overall he is a healthy and happy child and he is still the Brycen I gave birth to almost 3 years ago, despite developing some "quirks" along the way.
I guess what I am trying to say is that I am only human and am experiencing a lot of emotions attached to this situation that most of you will never understand... and that's OK. I don't expect you to understand how I feel or to know the exact thing to say to me in conversation about it. I have yet to determine if it is easier that I had knowledge and experience with Autism prior to Brycen's diagnosis. In some ways, I think it is easier because I understand the medical part of the diagnosis, as well as I'm aware of the therapies and treatments that are available. But then I know that my previous experience with Autism may prevent me from having as much hope for some kind of recovery of language or social skills that Brycen will need in order to live independently and go to college some day. I am having a hard time separating my work life/knowledge from my personal life/experience. I guess this will be a part of the grieving process I will go through before I can fully accept how our lives have changed.
Friday, July 3, 2009
The sweetness in his little voice
If you are a parent, you know how proud and excited you feel when your baby says their first word and how fun it was to hear the dozens or so others that come over the next year or so. Now, imagine what it would be like to wake up and realize your child can now only say a dozen words unlike the dozens from a month or so ago...and then within weeks, they can only say a handful of words. It's called regression...and until a few months ago, I never realized that is one of the first signs of Autism in many children.
Brycen's first word was "ball," besides Dada and Mama of course. Before he was two years old, he was able to say at least two dozen words and a few phrases...and then within a matter of weeks, he was only able to say a handful of words. It happened so quickly and within a few months after his little sister was born, so we just put the blame on not being an only child anymore. Now at almost 3 years old...he can say about 5 words spontaneously and another 5 or so with prompts from us. I remember so much about his first words...the way he said "bye"...he would drag it out and say "buhbuhbuh-byyyyyyeeee" and it was so adorable! He "lost" the word "bye" for about 6 months and only recently did he start saying it again (with prompts from us). "Ball" is the only word he has consistently said on his own since that first time.
This morning I had to get up long before anybody else to get ready for an early meeting for work. I had just finished showering and dressed and kept the bathroom door open in case he would wake up (by the way, this was a night that he slept all night long which only happens a couple times a week so Mommy was very happy despite being up earlier than normal). When I was brushing my hair, he came running out of his bedroom just like he does every morning and stops outside the bathroom. I said "Hi buddy...you slept all night long like a big boy!" and the sweetest thing came out of his mouth "Hiiiii." Now for many parents, this wouldn't be a big deal as this is one of the first words most children say, including Brycen. But in Brycen's case, this word was "lost" for the last 6 or so months and this is the first time I have heard it since then. I almost started to cry...but instead, I got down and gave him a big hug and said "you said Hi like a big boy." I didn't want to make a big deal about it as I don't know if it is here to stay, but to hear his sweet voice respond to my words appropriately and to say an actual word that can be understood is such a big deal in our house! I could not stop thinking of this moment on the drive to my meeting, during the meeting, and the drive home...and obviously I still can't stop thinking about it!
Brycen's first word was "ball," besides Dada and Mama of course. Before he was two years old, he was able to say at least two dozen words and a few phrases...and then within a matter of weeks, he was only able to say a handful of words. It happened so quickly and within a few months after his little sister was born, so we just put the blame on not being an only child anymore. Now at almost 3 years old...he can say about 5 words spontaneously and another 5 or so with prompts from us. I remember so much about his first words...the way he said "bye"...he would drag it out and say "buhbuhbuh-byyyyyyeeee" and it was so adorable! He "lost" the word "bye" for about 6 months and only recently did he start saying it again (with prompts from us). "Ball" is the only word he has consistently said on his own since that first time.
This morning I had to get up long before anybody else to get ready for an early meeting for work. I had just finished showering and dressed and kept the bathroom door open in case he would wake up (by the way, this was a night that he slept all night long which only happens a couple times a week so Mommy was very happy despite being up earlier than normal). When I was brushing my hair, he came running out of his bedroom just like he does every morning and stops outside the bathroom. I said "Hi buddy...you slept all night long like a big boy!" and the sweetest thing came out of his mouth "Hiiiii." Now for many parents, this wouldn't be a big deal as this is one of the first words most children say, including Brycen. But in Brycen's case, this word was "lost" for the last 6 or so months and this is the first time I have heard it since then. I almost started to cry...but instead, I got down and gave him a big hug and said "you said Hi like a big boy." I didn't want to make a big deal about it as I don't know if it is here to stay, but to hear his sweet voice respond to my words appropriately and to say an actual word that can be understood is such a big deal in our house! I could not stop thinking of this moment on the drive to my meeting, during the meeting, and the drive home...and obviously I still can't stop thinking about it!
Monday, June 29, 2009
Info about Autism
As some of you know, researchers have yet to find causes for ASD. Most recently, they have pinpointed specific genes that may contribute, but it is so complex that the numbers I have been seeing are up to 20 genes that may be involved. In addition to that, there has been little funding given to researchers in this area despite the overwhelming number of children that are now being diagnosed with an ASD. Personally, I feel that the reason statistics are rising is due to the educating of parents and caregivers to recognize the signs of an ASD. I believe that there are many elderly and middle-aged adults that also exhibit symptoms of an ASD, but due to little knowledge and probably some denial from older generations, they were labeled as "slow" or "shy" as children or may have been diagnosed with Mental Retardation, as that seems to have been the catch-all diagnosis in the past. These are just my opinions based off of my own work experience, education, and personal research and in no way do I consider myself an expert!
I am not going to say where I feel Brycen falls on the spectrum, because that is for the Autism team in IA City to determine. I do not feel it is a parent's job to "diagnose" a child themselves...a parent's job is to educate themselves and others as well as do anything possible to support and provide treatment for their child. Some people have wondered why a family physician or a pediatrician do not diagnose Autism Spectrum Disorders...good question as we frequently see family physicians/pediatrician's are able to diagnose many other disorders such as ADD. The reason for this is that ASD's are very complex and every child exhibits different symptoms...no two children are alike in this disorder, so it takes a team of specialists to gather information and make observations to give an accurate diagnosis that fits that child's specific symptoms and therefore, every child's treatment plan is also different.
There is no cure for Autism Disorders, nor are there any treatments that can reverse the symptoms a child exhibits. There are also no medications a child can be given to treat the Autism. Many children that are diagnosed with an ASD may also be diagnosed with ADD, ADHD, or OCD as it seems there is a very high correlation between these and Autism, and the child may be put on medication to assist with alleviating the symptoms of ADD/ADHD/OCD, but this medication is not meant to treat the Autism. This is the reason Autism professionals and advocates are working hard to educate parents and caregivers. The earlier a child is diagnosed with the disorder, the earlier various behavioral, speech, occupational therapy, etc can be started and it is stressed that early intervention may help a child to recover from some of the symptoms, such as they may learn to read/write/speak on the same level as other children their age.
I have attached two links to the Autism Speaks website to pages that I feel contain very important background information about ASD.
http://www.autismspeaks.org/whatisit/index.php
http://www.autismspeaks.org/whatisit/faq.php
I am not going to say where I feel Brycen falls on the spectrum, because that is for the Autism team in IA City to determine. I do not feel it is a parent's job to "diagnose" a child themselves...a parent's job is to educate themselves and others as well as do anything possible to support and provide treatment for their child. Some people have wondered why a family physician or a pediatrician do not diagnose Autism Spectrum Disorders...good question as we frequently see family physicians/pediatrician's are able to diagnose many other disorders such as ADD. The reason for this is that ASD's are very complex and every child exhibits different symptoms...no two children are alike in this disorder, so it takes a team of specialists to gather information and make observations to give an accurate diagnosis that fits that child's specific symptoms and therefore, every child's treatment plan is also different.
There is no cure for Autism Disorders, nor are there any treatments that can reverse the symptoms a child exhibits. There are also no medications a child can be given to treat the Autism. Many children that are diagnosed with an ASD may also be diagnosed with ADD, ADHD, or OCD as it seems there is a very high correlation between these and Autism, and the child may be put on medication to assist with alleviating the symptoms of ADD/ADHD/OCD, but this medication is not meant to treat the Autism. This is the reason Autism professionals and advocates are working hard to educate parents and caregivers. The earlier a child is diagnosed with the disorder, the earlier various behavioral, speech, occupational therapy, etc can be started and it is stressed that early intervention may help a child to recover from some of the symptoms, such as they may learn to read/write/speak on the same level as other children their age.
I have attached two links to the Autism Speaks website to pages that I feel contain very important background information about ASD.
http://www.autismspeaks.org/whatisit/index.php
http://www.autismspeaks.org/whatisit/faq.php
Sunday, June 28, 2009
Living by a routine
The kids and I returned home today from a short trip across the state to a friend's wedding. That means that the last 3 days have been nothing close to our normal routine...and surprisingly we only hit a few snags along the way.
If you know our family, you know that our life revolves around a routine. Not only do my children, especially Brycen, thrive on routine, but I feel that every child needs at least some part of the day that they know stays the same. The routine also allows me to set aside certain times for me to get some work done (easier said than actually done on most days) as well as know when I will get a much-deserved break some days!
Of course when we travel, the routine is pretty much thrown out the window...except meal times (and usually nap time) which I work hard to ensure are as close as possible to the normal routine of home. I have run across some people over the last year that have seemed frustrated with the fact that Brycen is used to eating or napping at certain times, and sometimes that may mean we cannot participate in a certain activity if it is at one of those times. But those are the things we sacrifice for our children and meeting their basic needs will always be more important than activities.
This is a rundown of how much I have to prepare for a couple days of travel, hence a change in routine. I always, always have snacks/juice with me whenever we are traveling outside of Storm Lake city limits. There is also very limited times of departure that work with Brycen's schedule (Aubree can adapt much easier to changes than Brycen obviously)...we either leave first thing in the morning, immediately following lunch (which is around 11:15/11:30), or immediately following supper (which is 5:00/5:30ish). After supper is a last resort for our family, and is usually used only when we have to leave after Mike is off work and it is pertinent that we leave that day and not the next morning. Sometimes I do not know what time we will leave until the night before or the morning of departure as I have to weigh out how Brycen slept that night, the mood he is in, and other factors. I also have to plan for any meals on the road, as we do not have the financial means to just run through a drive-thru when it is most convenient as most people do when they are traveling.
For Kenzie's wedding this weekend, it was necessary that Brycen nap in the car on the way there, which is not usually a first choice as he doesn't sleep as long as he needs to when we are driving, but it is doable. I also planned a little window of time for when we arrived to allow him to walk around to get rid of energy pent up from sitting in a carseat for a couple hours. I always have a diaper bag full of snacks and quiet toys to keep him occupied during church-type events. I had determined that the dinner probably wouldn't be served until well after his 5:00 window and of course I was trying to prevent melt-downs, so I had a lunchable packed in case it was needed. I also packed some of the bribery items that I frequently need for Brycen...a baggie of M&M's and extra sippy of juice. Of course, despite all of this planning, it never goes as I would like...but I guess it went better than I really expected!
If you know our family, you know that our life revolves around a routine. Not only do my children, especially Brycen, thrive on routine, but I feel that every child needs at least some part of the day that they know stays the same. The routine also allows me to set aside certain times for me to get some work done (easier said than actually done on most days) as well as know when I will get a much-deserved break some days!
Of course when we travel, the routine is pretty much thrown out the window...except meal times (and usually nap time) which I work hard to ensure are as close as possible to the normal routine of home. I have run across some people over the last year that have seemed frustrated with the fact that Brycen is used to eating or napping at certain times, and sometimes that may mean we cannot participate in a certain activity if it is at one of those times. But those are the things we sacrifice for our children and meeting their basic needs will always be more important than activities.
This is a rundown of how much I have to prepare for a couple days of travel, hence a change in routine. I always, always have snacks/juice with me whenever we are traveling outside of Storm Lake city limits. There is also very limited times of departure that work with Brycen's schedule (Aubree can adapt much easier to changes than Brycen obviously)...we either leave first thing in the morning, immediately following lunch (which is around 11:15/11:30), or immediately following supper (which is 5:00/5:30ish). After supper is a last resort for our family, and is usually used only when we have to leave after Mike is off work and it is pertinent that we leave that day and not the next morning. Sometimes I do not know what time we will leave until the night before or the morning of departure as I have to weigh out how Brycen slept that night, the mood he is in, and other factors. I also have to plan for any meals on the road, as we do not have the financial means to just run through a drive-thru when it is most convenient as most people do when they are traveling.
For Kenzie's wedding this weekend, it was necessary that Brycen nap in the car on the way there, which is not usually a first choice as he doesn't sleep as long as he needs to when we are driving, but it is doable. I also planned a little window of time for when we arrived to allow him to walk around to get rid of energy pent up from sitting in a carseat for a couple hours. I always have a diaper bag full of snacks and quiet toys to keep him occupied during church-type events. I had determined that the dinner probably wouldn't be served until well after his 5:00 window and of course I was trying to prevent melt-downs, so I had a lunchable packed in case it was needed. I also packed some of the bribery items that I frequently need for Brycen...a baggie of M&M's and extra sippy of juice. Of course, despite all of this planning, it never goes as I would like...but I guess it went better than I really expected!
Wednesday, June 24, 2009
"Welcome to Holland"
As a professional in the Human Service field, I had always feared something may be wrong with my children when I was pregnant with them. But once they both were born and I was able to see them, hear them cry, feel them breathe, and count their precious fingers and toes, the thought left my mind completely. They were both born healthy despite a different complication with each pregnancy. Then when Brycen was not crawling or walking by the time he turned a year old, the thought once again crossed my mind but was eased by his doctor, research I did, and then went away completely when he began crawling at 12 1/2 months and walking at 17 months (still within the typical range). We went almost another year before the thought of an actual disability crossed my mind again...but this thought was here to stay. Of course I had hope...and I still have hope that Brycen will be one of the children with an ASD that show tremendous progress and eventually "recover" to the point that he may not even meet the criteria for an ASD! We will always have hope...but in the meantime, one of the reasons of this blog is so others can see the emotions we are dealing with having a child with special needs. Here is a "story" written by a Mom of a child with special needs...most people that have worked in my field have read this story before as it is a very popular story to share with those who work with the families of children/adults affected by disabilities. For those of you who read this for the first time...here is a glimpse into how we are feeling as we grasp the way our family's life is changing. http://www.our-kids.org/Archives/Holland.html.
Where are we now?
I want to apologize now for what will probably be very lengthy posts...I love to write and I think this is going to turn into a great therapy for myself on those days that are very trying!
It is June 24, 2009 and Brycen will turn 3 years old in exactly 1 month. He has a handful of single words, 2 signs, and a couple 2 word phrases...and of course babbling that we try to decipher every day. About a month ago, AEA rated him at a 16 month old level...do the calculations...that is less than half of his actual age! His "odd" behaviors are pretty much a normal part of the day now...opening and closing all the drawers in the kitchen that are not yet child proofed, shuffling/wrestling his toys around, laying on the floor pushing his tractors/trucks back and forth, throwing toys, jumping up and down while flapping his hands, grunting when he wants something, playing with his hair continuously, and so many more. His aggressive behaviors are getting worse each week...spitting and blowing bubbles when he is unhappy or mad that he isn't getting what he wants, hitting us or his sister, throwing temper tantrums on the floor and throwing/breaking toys.
Last Wednesday, I took Brycen to Child Health Speciality Clinics in Fort Dodge for his initial evaluation. We came home with a most likely confirmation that Autism is the correct diagnosis and of course more questionnaires and profiles to fill out for the Iowa City specialist. I met with his educational team on Thursday for his IEP for school in the fall. Though the services they provide won't change with a medical diagnosis, they are putting him in the Mild-Moderate Autism category from the profiles we filled out for them and the observations they have made over the months. Yesterday, I received a call from U of I hospitals to set up his final evaluation/observing of him. They can't fit him in until Monday, August 31 which is 9 weeks away...though we know getting into a specialist can sometimes take months, so 9 weeks is probably very good. He will be seeing an entire team that includes a physician, speech pathologist, psychologist, and some others for about 5 hours that day. This team will determine the actual medical diagnosis (Autism is a very large category in Developmental disorders, so they need to determine what criteria he meets under Autism Spectrum Disorders for the exact diagnosis) and help with devising a treatment plan that works best for his needs and personality. Through this phone call, I also learned that part of the appointment is considered educational and our insurance company most likely won't cover the cost of that portion...$520! I have yet to call the health insurance company about coverage for the rest of the appt, but I did notice on our benefits page that Autism disorders are covered under the Mental Health section, so the medical part of the appt should be covered...though I will still call them to confirm this for my own piece of mind.
Of course Brycen's health comes first, so we will pay anything and do anything we need to to ensure he is receiving the best treatment for him! We learn more and more each day about the sacrifices parents make for their children...and we also learn that it is all worth it!
It is June 24, 2009 and Brycen will turn 3 years old in exactly 1 month. He has a handful of single words, 2 signs, and a couple 2 word phrases...and of course babbling that we try to decipher every day. About a month ago, AEA rated him at a 16 month old level...do the calculations...that is less than half of his actual age! His "odd" behaviors are pretty much a normal part of the day now...opening and closing all the drawers in the kitchen that are not yet child proofed, shuffling/wrestling his toys around, laying on the floor pushing his tractors/trucks back and forth, throwing toys, jumping up and down while flapping his hands, grunting when he wants something, playing with his hair continuously, and so many more. His aggressive behaviors are getting worse each week...spitting and blowing bubbles when he is unhappy or mad that he isn't getting what he wants, hitting us or his sister, throwing temper tantrums on the floor and throwing/breaking toys.
Last Wednesday, I took Brycen to Child Health Speciality Clinics in Fort Dodge for his initial evaluation. We came home with a most likely confirmation that Autism is the correct diagnosis and of course more questionnaires and profiles to fill out for the Iowa City specialist. I met with his educational team on Thursday for his IEP for school in the fall. Though the services they provide won't change with a medical diagnosis, they are putting him in the Mild-Moderate Autism category from the profiles we filled out for them and the observations they have made over the months. Yesterday, I received a call from U of I hospitals to set up his final evaluation/observing of him. They can't fit him in until Monday, August 31 which is 9 weeks away...though we know getting into a specialist can sometimes take months, so 9 weeks is probably very good. He will be seeing an entire team that includes a physician, speech pathologist, psychologist, and some others for about 5 hours that day. This team will determine the actual medical diagnosis (Autism is a very large category in Developmental disorders, so they need to determine what criteria he meets under Autism Spectrum Disorders for the exact diagnosis) and help with devising a treatment plan that works best for his needs and personality. Through this phone call, I also learned that part of the appointment is considered educational and our insurance company most likely won't cover the cost of that portion...$520! I have yet to call the health insurance company about coverage for the rest of the appt, but I did notice on our benefits page that Autism disorders are covered under the Mental Health section, so the medical part of the appt should be covered...though I will still call them to confirm this for my own piece of mind.
Of course Brycen's health comes first, so we will pay anything and do anything we need to to ensure he is receiving the best treatment for him! We learn more and more each day about the sacrifices parents make for their children...and we also learn that it is all worth it!
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