Last night I finished reading the book "Ten Things Every Child With Autism Wishes You Knew" by Ellen Notbohm...and am just amazed at the insight she gave to me about sensory issues and visual schedules. Before I go into these sections, I want to list the "Ten Things" which results in obviously 10 chapters in the book.
1. I am first and foremost a child.
2. My sensory perceptions are disordered
3. Distinguish between won't and can't
4. I am a concrete thinker. I interpret language literally.
5. Be patient with my limited vocabulary
6. Because language is so difficult for me, I am very visually oriented
7. Focus and build on what I can do rather than what I can't do
8. Help me with social interactions
9. Identify what triggers my meltdowns
10. Love me unconditionally
I found myself with tears running down my cheeks multiple times while reading this book. It is actually a fairly short book (just over 100 pages) and I usually would read that in a couple nights before bed, but I had to span this one out over a week because I was getting very emotional.
Brycen is very, very visually oriented and we know this is an area we really need to work on. I was very excited to start using pictures over the Christmas break to give him choices in what he wanted to play with, but that really fell to the wayside as it was A LOT of work! So, then we met with the speech pathologists a couple months ago and they reiterated to us how important beginning use of pictures with him is. So we have been using a basic picture book for Brycen to gather what he needs to leave the house (shoes, jacket, backpack for school) and for the process of teethbrushing. What we have found with Brycen right now, is he gets very distracted by other pictures and can't focus on the one we need him to, so we use the flip album for these so once he has his shoes, we can flip the page to jacket and so on. With visual schedules and the PECS (picture exchange communication system), you need to teach the child first how it all works and we all know I am not very good at teaching things. This book made me realize that we may have been able to prevent a few of these recent meltdowns if we had a visual schedule that showed him ahead of time who was coming to visit, what days he had school, etc. I shared with Mike the other night that I really need to start focusing on this...so that is my new goal!
The other part of the book that really struck me was the sensory issues. When Brycen was first evaluated by the school's Occupational Therapist (not in person, but through questionnaires and a phone interview with me), they said he really didn't have many issues, therefore there is no time built into his IEP to work on this. The OT is just checking in with the teacher every once in awhile and giving ideas to work on with him from what they report to her. Well, in the fall is when we really saw the sensory issues sneak in. Brycen now has a horrible gagging noise he makes when certain textures or foods are in front of him...he loves cookies and frosting, but at school he picked up a cookie with frosting on it and accidentally dropped it, landing on the frosting side...when they picked it up for him, he started gagging at the sight. I do recall him also gagging more than a year ago while watching me feed Aubree baby cereal and jarred baby food. He also has gagged at finger painting too!
He also is very sensitive to touch...he loves to run his fingers up and down our arms, and runs his hands across surfaces like the tops of the chairs or booths in restaurants... as well as the rough textured wall leading up the stairs at my parent's home. He rarely gives full blown hugs and instead, will turn his back to us when he wants to give us a hug. Haircuts are a nightmare...have even tried cutting while he fell asleep and he immediately wakes up! Like a typical child, he doesn't like water to run down his face in the bathtub while we wash his hair, but he doesn't really mind the hair washing...so it can't be that his scalp is all that sensitive. This is definitely one of those mysteries we need to work on or see a therapist about as he HAS to have haircuts in his life.
He also seeks out lots of activity. He is almost always jumping, flapping, running in circles or back and forth from the kitchen sink to the window in the living room (the exact thing he is doing right now and has been for about 5 minutes while I type this). Certain noises cause him to be very sensitive, to get scared and cover his ears...such as lawnmowers, vacuum cleaners, hair dryer...but we can sit in the car at a railroad while a train passes by with the windows open and he is in 7th heaven!
So now I have just written my own book...not quite 100 pages but by far one of my lengthier posts! I would like to keep some of these shorter, but I have to tell you that there are not short explanations to symptoms of Autism. It's not just one thing in one area...it's much, much more and I can't expect blog readers to get a good picture of Brycen if I keep it short and sweet...because that is not Autism and that is not Brycen (nor is it me when it comes to writing...or talking...or anything).
"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller
Saturday, April 17, 2010
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Autism and Our Family
"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.
Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!
Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.
We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.
Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.
Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!
Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.
We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.
Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.
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