Yes, you read that right...I am absolutely ecstatic that my 2 yr old girl and 4 yr old boy just had a fight!!! A real, in your face, yelling fight!
I wanted to have some peace & quiet so I could prepare my menu and grocery list for the next week so I thought I would put a video in. I don't usually ask their opinion with videos and just play one they haven't watch in awhile...or if Brycen is having a hard day, I typically turn to his favorite GeoTrax, Elmo, or Thomas videos.
For some reason, I thought I would be a nice mom and give them a choice...not really expecting much for an answer from either. Well, I held up a Thomas one and Brycen did his high-pitched yell that means he is happy, while Aubree said "no omas" (that was not a mis-spelling...that's what Thomas sounds like coming out of her mouth). So I started to put it away, and Aubree spotted the Curious George Christmas video and says "George" so I get it out and Brycen comes running over, crying, tears running down his cheeks and stands right in front of her and shakes his head no saying "uhuh." Aubree looks right at him and says "yes" like she really understood him! Brycen then took matters into his own hands and pulled the George case out of my hand, threw it down...and Aubree then yelled "sit!" to him.
I just sat there in awe of both of them! Before this, Brycen has always just used aggressive tactics towards Aubree when he doesn't like something she is doing by either pushing her down, hitting her back or stomach, or headbutting her. I was so proud of him for standing up for himself and I was also proud of Aubree for responding directly to him and treating him like a real sibling (despite the telling him to "sit"). Needless to say, I gave Brycen the winning point in this fight and guess what we are now watching for the next 40 minutes...Thomas the Train!!
Friday, July 30, 2010
The choice to look for more answers
One year ago, we were devastated and attempting to accept the Autistic Disorder diagnosis that was given to Brycen. Today, we are finding things to be so much easier to accept and time has given us the chance to research and learn more about Autism and how it affects our family.
A meeting for work this morning gave me the chance to meet a very knowledgeable staff that pointed me in the direction of Fragile X syndrome. This is an inherited disorder that affects children in many ways similar to Autism and a good chunk of children may actually be diagnosed with Autism before doctors realize it is actually Fragile X. "Fragile X is the most common cause of Autism and Autistic-like behaviors." Fragile X is the only area on the spectrum that has a known cause and is genetic. Mike and I discussed getting Brycen tested for this as soon as possible as it would help us narrow down where he falls on the spectrum. If the test is negative, then at least we have ruled it out...but if the test is positive, then we know where we need to focus, the reason for the autism, and since it is genetic, it gives our family a chance to find out if they are carriers, as well as Aubree.
The testing is very simple and I have made a call to U of I to determine if we need to go there for it or if we can go back to CHSC in Fort Dodge to have the DNA testing done. I have attached a link to the National Fragile X Foundation page so you can read for yourself about Fragile X. It is actually very interesting! We'll keep you updated on what we find out!
http://www.fragilex.org/html/what.htm
A meeting for work this morning gave me the chance to meet a very knowledgeable staff that pointed me in the direction of Fragile X syndrome. This is an inherited disorder that affects children in many ways similar to Autism and a good chunk of children may actually be diagnosed with Autism before doctors realize it is actually Fragile X. "Fragile X is the most common cause of Autism and Autistic-like behaviors." Fragile X is the only area on the spectrum that has a known cause and is genetic. Mike and I discussed getting Brycen tested for this as soon as possible as it would help us narrow down where he falls on the spectrum. If the test is negative, then at least we have ruled it out...but if the test is positive, then we know where we need to focus, the reason for the autism, and since it is genetic, it gives our family a chance to find out if they are carriers, as well as Aubree.
The testing is very simple and I have made a call to U of I to determine if we need to go there for it or if we can go back to CHSC in Fort Dodge to have the DNA testing done. I have attached a link to the National Fragile X Foundation page so you can read for yourself about Fragile X. It is actually very interesting! We'll keep you updated on what we find out!
http://www.fragilex.org/html/what.htm
Wednesday, July 28, 2010
Blog post from another parent addressing "Expectations"
There are no words to express the emotions this post brought out in me...WOW is about all I can say as I really feel this mother took our life and just wrote it out on paper without even knowing me! Through this turn of events in our life, we have definitely learned to not take one word, one skill, eye contact, etc for granted. Like the writer said, multiple expectations are placed on a child as soon as they are born not only by parents, but other family, strangers, etc...and then when your child does not meet these expectations and are "left behind" by other children their age, it hurts so much knowing there is no specific path to follow to "catch" them up. No doctor can tell us one certain therapy or one certain behavioral or sleep medication will work...so we just keep going and going and going...and we feed off of those extraordinary things he does that are unexpected like the child in this story yelling out "a cow." So many skills come easy to children and the parents just cross that off their mental list and move onto the next one. Meanwhile, here is Brycen fighting and trying so much harder just to cross that one thing off of the list...the one thing that another parent of a similar aged child has pretty much forgotten about because their child did it so easily, without help, and it was so long ago.
I hope you enjoy reading this post as much as I did...and hope it gives you one more glimpse into the lives of Autism!
Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.
I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.
With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.
On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”
Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”
When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.
So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.
I hope you enjoy reading this post as much as I did...and hope it gives you one more glimpse into the lives of Autism!
This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.
Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.
I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.
With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.
On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”
Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”
When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.
So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.
Monday, July 26, 2010
Happy 4th Birthday, Brycen!!!
How ironic that blogger just told me that this is my 100th post on this blog and it's about such a great topic! Brycen turned 4 on Saturday and was spoiled all day with toys, fun things to do, family that visited, an awesome Thomas the Train cake, all ending with an overnight slumber party with Grandma & Grandpa at the campground!
The highlights of Brycen's day are as follows:
- He touched a fish that Uncle Pat caught!
- He practiced casting off a dock on the lake.
- He played ball outside.
- He worked on hopscotch outside.
- He opened presents that consisted of many Thomas and other train paraphenelia.
- His babysitter brought him balloons (including a Thomas one) and a home-made balance beam made by her and her dad.
- He smiled so big when we sang "Happy Birthday" to him!
- He ate a big piece of chocolate cake!
He had such a full and exciting day with many people he loves and all kinds of things he enjoys doing!
Can't believe my baby boy is 4 already and starting his second year of pre-school in a month! It seems like yesterday that we were walking into the hospital, anticipating the induction and his arrival...and out he came, all 8lbs 5.4 ounces and even 2 weeks early and the love of our lives!
Friday, July 23, 2010
If you want honesty...this is the one to read.
Many people have mentioned that they like my "honest" posts that state it like it is with Brycen. Well, all of my posts are honest as I'm not one to hide how I feel as I'm just not that good of an actress...so, here's another one for ya...
Note my two recent statuses on FB that said how much I missed my kids. I complain all the time about needing "me" time and never getting it, and here I had almost 36 hours away from the kids and all I did was think about them while I was in Des Moines for work.
So, I head home as soon as I possibly can today, absolutely ecstatic to walk in the door and kiss those sweet faces! Lucky for me, both of those sweet faces were also happy to see their mommy and gave hugs and kisses right away. I am excited to have an evening with them without having to do any dishes (thank you, Mom!) and no work to think about until Monday...and then it happens after he needed to be coaxed inside....
MELTDOWN (please don't confuse a meltdown with a temper tantrum...temper tantrums cease very shortly after starting on their own and are typically due to the child wanting some kind of attention...meltdown is a word frequently used in "disability world" due to the extreme nature of how much happens, for various reasons that are possibly unknown, the length of time, the inability to distract and calm once in crisis mode, the child is not capable of using this tool as a reason for attention, etc, etc)
...throwing toys, shuffling toys in anger, couldn't decide what toy to play with, then throwing the two he chose to bring out to the living room, hitting, screaming...which then led me to decide he just needed a bath, snack, and was going to bed. Well, implementing the bath became a battle of him wanting out, but me knowing he needed to be washed up from the sunscreen he had on his skin from throughout the day...throwing water outside of the tub, trying to climb out, hitting, pinching, gagging, almost vomiting, and screaming until I let him out. Then he was mad that I was not going to allow him to play with toys. This resulted in a full-blown me attempting deep pressure hugs and rocking and Brycen not tolerating anything for the next 20 minutes while I wrestled to keep him and I as safe as possible (meanwhile Grandma got Aubree out of the room and into the bathtub to keep her safe and distracted from the events). Finally, he began to wear down and I started to use a social story with "Brycen/Thomas train" as the character and that "Brycen/Thomas" was going to calm down and drink some juice and eat a snack like a good boy. He finally gave in and ate his snack and then within a couple minutes of sitting in the chair with his "calm down" sensory toys, he fell asleep.
Lessons learned: No stimulating activities right before bed mixed with heat and change of routine with Mommy and Daddy both gone overnight probably factors into more than we expect. While some people may have given in to letting him just eventually play or stay outside longer, my mission is to get him to eventually realize that WE are the parents and WE make the rules and he will need to just accept what we decide because we do it in his best interest and for sake of routine which we know is necessary for him to continue to thrive.
Now, here's for the completely honest truth...I am mad, hurt, and disappointed...I had a picture in my head of a perfect evening with them after returning home from two days away. I leave to find myself missing him and Aubree like crazy, create this fantasy in my head that our life is close to normal after hearing stories from others at work about their children and all that they do that is fun and "normal", then return home to have reality thrown right in my face. I get that with him and most children with developmental delays, it's usually two steps forward, one step back (maybe even two or three), but why did it have to happen tonight? Why couldn't I foresee where this was headed and get it stopped before he went into crisis mode? Why does it hurt me so personally and make me think he doesn't love me or doesn't want me as his mother when things like this happen?
I don't expect or even want people to try to answer those questions...the point of me sharing this story with all of you just a mere two hours after it all started is for you to see the honesty I promised in this blog. I don't want advice on how I am supposed to feel or how "of course he loves you"...I just want people to listen and to see how hurtful it is to me as a mother to watch my child go through something so traumatic that I can't stop or sometimes even pinpoint why it is starting, much less be able to even reach him to bring him out of his "world" and back into mine so I can soothe and kiss him to make him happy again. This is reality for us...and it has only taken me a year to figure out that just when it seems too good to be true that progress is being made and meltdowns are happening less, something happens like this to make all of those "acceptance" feelings fall to the side and I once again wonder if I am strong enough to do this anymore.
Now the bright side is that he is in bed now and hopefully stays there all night after the traumatic and tiring events of the evening...and tomorrow is a new day and most importantly, it is his 4th birthday! That cheers me up just a little bit AND I got a nice workout in my arms tonight with all the attempted pressure and rocking!
Wednesday, July 21, 2010
Dealing with Medical Insurance
Before I go into any details I want to let everybody know that we are VERY lucky in that Brycen qualified for waiver services and Medicaid insurance shortly after he received his official dx from U of I! Shortly after Brycen qualified for the Intellectual Disabilities Waiver which includes the Medicaid, respite and SCL services, this waiver was full and now others are on a waiting list. The other three waivers that are available depending on the child's dx are also on waiting lists which is not fair to those parents that are battling to get insurance to cover necessary appointments, testing, and therapies. One 1/2 hr speech appt is billed at $77! Can you imagine trying to afford to pay for those appts out of your pocket...much less usually 4-5 appts a week are needed?!
So how our insurance works is that every dr appt and therapy appt are run through our private insurance (Blue Cross Blue Shield) first and then Medicaid will pick up the amount that is left. We were initially told by the therapist and a doctor at U of I that BCBS would not cover any of his therapies, which is what made getting Medicaid so important to us. With Autism, studies have shown the earlier a child receives consistent intervention, the decrease in services they will need later in life and during school. Why the heck would insurances NOT cover this then? This has been a hot subject in various state's governments lately.
Anyway, surprisingly to us...Brycen's speech for May WAS COVERED by BCBS! I'm not sure of all the details, but my understanding is that prior authorization is needed and since Brycen's doctor gave an order for the therapy and because his records and treatment plan demonstrate that he is not talking and far behind other children his age, this was the reason it is covered. The extent of coverage is not known at this time, but we are guessing about 20 appts each calendar year which we know Brycen will have burned through in two months, but Medicaid will pick up the rest of the speech appts which is AWESOME and they currently pay the 10% coinsurance for each of the first 20! The OT is the same way in that they will cover 20 appts each year and since he started later with OT and only goes twice a week, very little will need to be paid by Medicaid for this year.
We are some of the lucky ones and compared to some other states, Iowa is far better with more waiver spots and also other ways of getting Medicaid before a waiver spot if income is low enough. Of course, Iowa is not the best state...but I have been told that moving to MN would really decrease the amount of services we would get and we would be placed back on a waiting list. That is not acceptable as we definitely can't afford to pay out of pocket for the therapies he needs without going far into debt...what hard-working family could? The reason I need to work is to pay just the bills we have now and the groceries and diapers we need now...there is not extra money to pay for that cost, much less I couldn't work more hours to help with that since I would need to be available to take him to all the therapies and appts. I really feel bad for those families that are battling this right now in Iowa, all other states, and across the world that aren't qualifying for insurance that will cover what is needed for their child. As if these parents of children with autism and all other life-long disabilities don't have enough to handle!
So how our insurance works is that every dr appt and therapy appt are run through our private insurance (Blue Cross Blue Shield) first and then Medicaid will pick up the amount that is left. We were initially told by the therapist and a doctor at U of I that BCBS would not cover any of his therapies, which is what made getting Medicaid so important to us. With Autism, studies have shown the earlier a child receives consistent intervention, the decrease in services they will need later in life and during school. Why the heck would insurances NOT cover this then? This has been a hot subject in various state's governments lately.
Anyway, surprisingly to us...Brycen's speech for May WAS COVERED by BCBS! I'm not sure of all the details, but my understanding is that prior authorization is needed and since Brycen's doctor gave an order for the therapy and because his records and treatment plan demonstrate that he is not talking and far behind other children his age, this was the reason it is covered. The extent of coverage is not known at this time, but we are guessing about 20 appts each calendar year which we know Brycen will have burned through in two months, but Medicaid will pick up the rest of the speech appts which is AWESOME and they currently pay the 10% coinsurance for each of the first 20! The OT is the same way in that they will cover 20 appts each year and since he started later with OT and only goes twice a week, very little will need to be paid by Medicaid for this year.
We are some of the lucky ones and compared to some other states, Iowa is far better with more waiver spots and also other ways of getting Medicaid before a waiver spot if income is low enough. Of course, Iowa is not the best state...but I have been told that moving to MN would really decrease the amount of services we would get and we would be placed back on a waiting list. That is not acceptable as we definitely can't afford to pay out of pocket for the therapies he needs without going far into debt...what hard-working family could? The reason I need to work is to pay just the bills we have now and the groceries and diapers we need now...there is not extra money to pay for that cost, much less I couldn't work more hours to help with that since I would need to be available to take him to all the therapies and appts. I really feel bad for those families that are battling this right now in Iowa, all other states, and across the world that aren't qualifying for insurance that will cover what is needed for their child. As if these parents of children with autism and all other life-long disabilities don't have enough to handle!
Tuesday, July 20, 2010
The sacrifices we have made as parents...and parents of a child with a disability
Forewarning: This post may be a little jumbled as I am using this as a way to sort out my feelings on a few subjects that I really wish others in my life could understand.
When you become a parent, you agree to make adjustments to your life to accomodate the change...you give up things that were previously very important to you because you know this precious baby is far more important than any of that could ever be...you no longer have a 40 hr a week full-time job, you have a 24/7 job...you make financial sacrifices in many different ways...you learn to move the knives to the back of the counter from sticky little hands...to be able to function on only a few hours of sleep some nights...and so on.
We accepted all of these changes! There have been and will continue to be bumps in the road where we wonder what we have gotten ourselves into and wonder how much further our buttons can be pushed before we blow up...but at the end of the day, we both love our life and love our children and would not change the sacrifices we made to bring them into this world and to support them.
When Mike first signed on for the management program with Fareway, we were pregnant with Brycen and knew we both needed to be in "grown-up" jobs. We never expected to be transferred to the other side of the state 11 months later! We sacrificed the home and neighborhood we loved, the friends we left behind, I sacrificed a job I very much enjoyed. When most people move, they have the choice of where they are going, but with this position, we not only do not have the choice, but we have no idea when each move will happen. Mike was in the CF store for 11 months before moving and we have been here for almost 3 yrs & 3 months with no signs of moving anytime soon. It's a little bit of a mind game...and you wonder should I do this or that just in case we are notified of a move next week? I ran across this situation with ordering new checks...what if I waste $30 on a box of checks for the bank here and we get transferred next week (you all know how frugal I am, so losing that $30 to me would be heartbreaking!).
Now, not only are we dealing with our own feelings on this, but we were thrown another obstacle with Brycen's autism and his rigid routine and obvious disregard for changes. We are not letting this change the plan of Mike completing the management program despite the multiple moves ahead of us because we know the end product will be well worth all the turmoil it may bring to Brycen and our sanity.
I never, ever thought I would be a stay-at-home Mom. I went to college for a reason and have been working since I turned 16. Don't get me wrong...I enjoyed my 10 week maternity leave with Brycen, but I was looking forward to adult conversation daily and not constantly be making bottles and changing diapers all day long once I returned to work. Though I do remember a long day of work starting at 7am and not getting home until after Brycen was in bed, and I cried because I realized I did not get to feed him one single bottle or change one diaper all day long and I had missed out on an entire day of those simple bonding moments.
When we moved here, things changed in that aspect. We had no family or friends within hours of us, so I started over in a minimum wage job at the daycare so that I could be close to Brycen and then moved onto in-home daycare, and then to an entry level job in disability services that worked around Mike's schedule. You see, once Brycen started to regress and we were given the dx of Autism, we realized there are very few people that we trust to care for him and keep him safe. The main daycare here in town would not have the funding to care for him adequately or the ability to teach all of the staff about his specialized needs, and the in-home daycares would not be able to keep up with the supervision he needs to keep him and the other kids safe. Typical daycare settings will never be a possibility for Brycen again, so we completely rely on Mallory, a couple close friends as back-ups, and our parents/family to help us out with my work schedule.
I have a flexible job currently that works great most of the time with my family obligations, therapy schedule, and personal life. But we continue to make sacrifices...since I travel so much for work, we do not get back to the Waterloo area to see family as often (it's been since February I believe). We do not have a lot of "couple" time being that sometimes I walk out the door for a mtg as Mike is walking in the door or vice versa. Financially, we have recovered some from the days where I was only making minimum wage after moving here, but finances continue to be a struggle for us (I swear I will be still be paying off my student loans in 20 years!) though it is far better than it was a year and half ago. We work hard for our money and take pride in that we save everything we need for every vacation we take. We know we need to give ourselves and our family a break from the same old-same old, so we save-save-save so that we can do that each year without going into more debt. They are not extravagant vacations by any means like those I sometimes hear and read about from other families we know...but they do the job of giving us a break, giving our kids new opportunities and experiences, and bringing us closer as a family as well as we can feel accomplished in that we were able to do it all in cash on such a limited budget.
I will never go back to work full-time again...and surprisingly, I am happy with that decision now! I don't know if my part-time/work at home job will be available for our next move, but that's ok. We always make things work out and that's a part of the sacrifice. The end product will mean more financially stable, a home of our own that Brycen can thrive in, my availability of time to get Brycen to and from all the therapies and appts he will ever need, as well as being there to watch Aubree grow up and attend all of her school and extracurricular activities without worrying/struggling with scheduling around a job. I've realized over the last year that staying at home does not mean I am giving up on my dream to help those with disabilities, but maybe all of those years of college and experience set the stage for me to be the best Mom possible to Brycen. He and Aubree are my dream...and maybe I am the lucky one in that I get to combine my love of helping people with disabilities with Brycen's autism and being a parent at the same time.
Monday, July 19, 2010
A.U.T.I.S.M.
A= Always U= Unique
T= Totally
I= Interesting
S= Sometimes
M= Mysterious
I saw this on another blog one day and wrote it down, always meaning to add it to a post...so I searched and searched my work notebook today for this and finally found it!
Yes, he is unique just like every other child...and it's definitely interesting to stand back and watch him attempt to interpret his environment...and the mysteries surrounding his behavior will always intrigue me.
Sunday, July 11, 2010
Brycen is catching a ball!
Brycen has always been pretty good at sports, hence he IS his father's son:)
Mike has been working with Brycen on catching again as he used to have this skill almost mastered over a year ago, but lost some of his fine motor skills & hand/eye coordination during the regression that are required to be able to catch a ball.
Here is a video of his progress and the result of this hard work!
Note in the video you will see Brycen looking at himself in the TV screen often. This is something he does a lot lately. Now that he is starting to do some dance moves again to various songs on cartoons, he tends to sit down on the floor in front of the glass door to the TV stand and watch himself as he does the moves. He will also turn around in his chair at the table so he can see himself eating in the microwave door that is directly behind him on the counter. I'm not quite sure what to make of all this, but I think that his awareness of himself and interest in watching himself is a good thing.
Oh, and almost forgot to mention that Brycen did a great job imitating "bubbles" today! I distinctly remember him saying this word quite clearly before he regressed. Shortly after Aubree was born and while my Mom was here visiting, I remember sitting in the living room at the old house feeding Aubree and could hear Brycen outside on the porch with my Mom clearly saying "bubbles" while she would blow them and he would chase them. His fascination with bubbles has not ended, though that word did disappear. He is now saying "bu-bu" with prompts from us...and would even put together the sign "more", "bu-bu", and the sign "please" with prompts today. While the words we do get from him are prompted, at least we are getting a few more word approximations out of him...and not just once, but multiple times! The key to working with Brycen (and many children on the Autism spectrum) is repetition, and while it does get boring to say the same phrase over and over for 1/2 hr of "work", and then have to take "breaks" to let Brycen finish his flapping so that he can concentrate once again on the "work", the rewards can be amazing! Good job, Brycen!!!
Mike has been working with Brycen on catching again as he used to have this skill almost mastered over a year ago, but lost some of his fine motor skills & hand/eye coordination during the regression that are required to be able to catch a ball.
Here is a video of his progress and the result of this hard work!
Note in the video you will see Brycen looking at himself in the TV screen often. This is something he does a lot lately. Now that he is starting to do some dance moves again to various songs on cartoons, he tends to sit down on the floor in front of the glass door to the TV stand and watch himself as he does the moves. He will also turn around in his chair at the table so he can see himself eating in the microwave door that is directly behind him on the counter. I'm not quite sure what to make of all this, but I think that his awareness of himself and interest in watching himself is a good thing.
Oh, and almost forgot to mention that Brycen did a great job imitating "bubbles" today! I distinctly remember him saying this word quite clearly before he regressed. Shortly after Aubree was born and while my Mom was here visiting, I remember sitting in the living room at the old house feeding Aubree and could hear Brycen outside on the porch with my Mom clearly saying "bubbles" while she would blow them and he would chase them. His fascination with bubbles has not ended, though that word did disappear. He is now saying "bu-bu" with prompts from us...and would even put together the sign "more", "bu-bu", and the sign "please" with prompts today. While the words we do get from him are prompted, at least we are getting a few more word approximations out of him...and not just once, but multiple times! The key to working with Brycen (and many children on the Autism spectrum) is repetition, and while it does get boring to say the same phrase over and over for 1/2 hr of "work", and then have to take "breaks" to let Brycen finish his flapping so that he can concentrate once again on the "work", the rewards can be amazing! Good job, Brycen!!!
Friday, July 9, 2010
Brycen is HAPPY!
Over the last month or so, I have noticed that Brycen seems so much more relaxed and content with life. His tantrums have lessened (cross my fingers! knock on wood!) and he just seems like he is really trying harder with everything. I know he loves going to school, but I think it was starting to wear on him in the end. While we know he needs structure to keep him from doing a lot of stimming and showing aggressive behavior, we also want him to have downtime to do what he WANTS to do! Isn't that what being a kid is all about?!
Here is a quick summary of the past week and half events:
- He saw the pediatric dentist for the first time. Of course it was still traumatic to him, but so much faster and less stress overall than when we tried last year with the regular dentist. This one was so fast, counting/brushing/flouride, that before he knew what he was fighting, it was over that fast and with NO MELTDOWN! According to her, he has beautiful teeth and the grinding is doing no damage, and she is actually not even concerned about it until his permanent teeth come in.
- He put on one of his sandals by himself this week with the OT after she demonstrated with the other and loosened them up. This is something I have been trying for about two months and he just refuses to do anything for me! Now I know the truth...and he's not going to keep getting away with it!
- Speech is the same...imitating letters, some words, and attempting to count to 3 in imitation of a cartoon he watches. He is now starting to answer our "yes or no" questions without prompting...we ask the question, and it does take him 30 or so seconds to process, but then he answers on his own...whereas before we would have to prompts "yes or no?"
- He sat through most of the parade and the fireworks fabulously! He seemed completely oblivious to the noise from the fireworks because he was so fascinated by the cars driving by on the street...and during the parade, he would hide his eyes from louder noises. Interesting that both had loud noises, but he had different reactions to each one.
We are heading to Kansas City on Monday for 4 nights to visit the zoo, Deanna Rose Farm, a Clifford the Big Red Dog exhibit, hotel waterpark, Union station/train models and of course to visit family that live there. The whole week is entirely focused on the children and what they like to do...and that's the way it should be! Mike and I have agreed to save diligently so we can spend one week of vacation each year doing something focused on the kids and the other week of vacation each year focused on us and our needs (hence Vegas in February).
Surprisingly, I am much more relaxed about taking Brycen to all these places because of how well he has been doing lately! Of course there are some things we still need to stress about like his wandering away from us, the loud noises, certain sensory toys packed...but he has been demonstrating to us that he can be so much more flexible when away from home and that is making planning this vacation so much easier!
Subscribe to:
Posts (Atom)