Reflection on the past year

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!

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

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!

http://www.walknowforautismspeaks.org/faf/home/default.asp?ievent=330303

"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!"

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.

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!

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!

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).