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).
Saturday, April 17, 2010
Friday, April 16, 2010
Autism Myths
I am attaching a link to a site that lists myths about Autism that a friend recently posted on Facebook (thanks Angie!). It's amazing that people still believe these things several years after Autism has come into the news and society is being faced with it! The best is when it says that people believe all people with autism are alike based on seeing the movie Rainman. LOL! Rainman was released in 1988 and Autism was still so foreign to so many people at that time and research was just starting to come around.
One thing to note with this article is that I don't appreciate them using "autistic people" through the entire thing. I don't call you a "cancerous woman" or "diabetic man"....so please do not label my child as "autistic" like that is all he is. He is a child with Autism, as Autism does not define him...it is a part of him that he is fighting just like a person with cancer is fighting back against their disease!
http://autism.about.com/od/whatisautism/tp/topmyths.htm
One thing to note with this article is that I don't appreciate them using "autistic people" through the entire thing. I don't call you a "cancerous woman" or "diabetic man"....so please do not label my child as "autistic" like that is all he is. He is a child with Autism, as Autism does not define him...it is a part of him that he is fighting just like a person with cancer is fighting back against their disease!
http://autism.about.com/od/whatisautism/tp/topmyths.htm
Rough week...time to reflect
The last week has been so stressful for everyone in this house! While things are going better with Aubree now that she is not in pain, Brycen just doesn't have the capability to process all the change that is going on. Not only did he have multiple days off of school, but both sets of grandparents visited within a week, Aubree broke her leg, and his whole daily routine was pretty much thrown out the window despite all attempts from us to keep it as similar as possible.
The things that Brycen seemed to enjoy before all of this such as leaving for school in the morning, eating, getting ready for baths...they have all become a struggle in the last week. Over the last couple days since it has just been the 4 of us again, we have determined the biggest change for him is having visitors at the house. Don't get me wrong, he LOVES his grandparents so much, but when we go weeks of it just being the 4 of us and then out of the blue we have one or more extra people in the house for days, he just can't adjust to that. I think it is hard on typical people to adjust to other's visiting for days, but for Brycen, even if it is people he knows and enjoys, a good change can still be so life changing for him and he just can't find the balance of it all.
The part that I am struggling with is that sometimes we can't predict what is going to happen (obviously meaning Aubree breaking her leg and not being able to ride in a car with the cast) and therefore we cannot prepare Brycen for the change. I pride myself on keeping his days as routine as possible and to be prepared for as much as possible, but unfortunately Mommy just couldn't predict this change. Most children would just learn to adapt to the change because they are not given a choice and may have a couple temper tantrums in the process, but in Brycen's case that is not possible and the temper tantrums are not temporary or short-lived. I am still grasping the fact that he does not have the capabilities in his brain to process change so suddenly and to adapt to what others need. This just reiterates to me once again that Autism just takes over your world, your family, your thoughts, your feelings...it's nothing we asked for and of course it is nobody's fault, but these are the days and weeks where we question "why". Whereas other disorders or medical needs can be helped with medication, children grow out of, or only affect one or very few parts of a family or child's life, Autism is 24 hours a day, 7 days a week, 365 days a year for a life time. I hear people say to "walk in their shoes" or "live in their house" for sometime to see what their life is like...honestly, I don't want anyone to have to walk in my shoes or live in my house to see what goes on because I do not wish on ANYBODY what Autism requires of me. Just because you may work 40 hours a week with a child with Autism or you have read many books or taken many courses, nothing prepares you for your life being taken over by this disorder. Others go home after a few hours with him, don't deal with the lack of sleep, the financial stress of paying for evaluations and ongoing therapies, the unwanted advice, the many hours of researching medications to help alleviate one or more symptoms, the ongoing IEP meetings and conferences to discuss your child's goals, the guilt that you could do more to help him or enroll him in more therapy, the strain of not being able to work full-time anymore because no daycare could care for him and keep him safe, having to research special needs trusts for when our time comes to leave this world, the constant grieving process that seems to keep going in circles, the lack of knowledge and acceptance of Autism in the general population, the stares when your child starts flapping and making odd noises in the middle of the store, not able to have time with your spouse on a regular basis, not having any idea what the future possibly holds because there is no research yet to tell you, and I could keep going on and on and on.
Then after I write this, I look over at Brycen giggling while he is watching a Thomas the Train episode...and I get tears in my eyes because I would never trade him for any other child in the world! So I guess I also don't want anyone to walk in my shoes or live in my house because I don't want to share this precious child that was given to me for a reason only God knows.
The things that Brycen seemed to enjoy before all of this such as leaving for school in the morning, eating, getting ready for baths...they have all become a struggle in the last week. Over the last couple days since it has just been the 4 of us again, we have determined the biggest change for him is having visitors at the house. Don't get me wrong, he LOVES his grandparents so much, but when we go weeks of it just being the 4 of us and then out of the blue we have one or more extra people in the house for days, he just can't adjust to that. I think it is hard on typical people to adjust to other's visiting for days, but for Brycen, even if it is people he knows and enjoys, a good change can still be so life changing for him and he just can't find the balance of it all.
The part that I am struggling with is that sometimes we can't predict what is going to happen (obviously meaning Aubree breaking her leg and not being able to ride in a car with the cast) and therefore we cannot prepare Brycen for the change. I pride myself on keeping his days as routine as possible and to be prepared for as much as possible, but unfortunately Mommy just couldn't predict this change. Most children would just learn to adapt to the change because they are not given a choice and may have a couple temper tantrums in the process, but in Brycen's case that is not possible and the temper tantrums are not temporary or short-lived. I am still grasping the fact that he does not have the capabilities in his brain to process change so suddenly and to adapt to what others need. This just reiterates to me once again that Autism just takes over your world, your family, your thoughts, your feelings...it's nothing we asked for and of course it is nobody's fault, but these are the days and weeks where we question "why". Whereas other disorders or medical needs can be helped with medication, children grow out of, or only affect one or very few parts of a family or child's life, Autism is 24 hours a day, 7 days a week, 365 days a year for a life time. I hear people say to "walk in their shoes" or "live in their house" for sometime to see what their life is like...honestly, I don't want anyone to have to walk in my shoes or live in my house to see what goes on because I do not wish on ANYBODY what Autism requires of me. Just because you may work 40 hours a week with a child with Autism or you have read many books or taken many courses, nothing prepares you for your life being taken over by this disorder. Others go home after a few hours with him, don't deal with the lack of sleep, the financial stress of paying for evaluations and ongoing therapies, the unwanted advice, the many hours of researching medications to help alleviate one or more symptoms, the ongoing IEP meetings and conferences to discuss your child's goals, the guilt that you could do more to help him or enroll him in more therapy, the strain of not being able to work full-time anymore because no daycare could care for him and keep him safe, having to research special needs trusts for when our time comes to leave this world, the constant grieving process that seems to keep going in circles, the lack of knowledge and acceptance of Autism in the general population, the stares when your child starts flapping and making odd noises in the middle of the store, not able to have time with your spouse on a regular basis, not having any idea what the future possibly holds because there is no research yet to tell you, and I could keep going on and on and on.
Then after I write this, I look over at Brycen giggling while he is watching a Thomas the Train episode...and I get tears in my eyes because I would never trade him for any other child in the world! So I guess I also don't want anyone to walk in my shoes or live in my house because I don't want to share this precious child that was given to me for a reason only God knows.
Saturday, April 10, 2010
April is Autism Awareness month
Things have been a little crazy around here lately and I can't believe I have not posted once in the month of April until today!
April is Autism Awareness month and I especially want to thank all of those who supported the "wear blue on April 2" event. I was actually attending a conference about Autism and social relationships that day.
I can't believe the Iowa Walk Now for Autism Speaks is only a little more than 2 months away too! The team has raised over $700 so far and we are well on our way to meeting our $2000 goal. Melanie has finalized the design for the t-shirts and I will be submitting the list of sizes to the printers this week, so if you would still like to walk, you have a few days to sign up and email me your tshirt size.
Mike found a great website that we joined that does research on how Autism affects family, finances, relationships/marriage, and many other things. We have entered Brycen's information on this site (IAN- Interactive Autism Network) and have answered a few background questionnaires so far. I have found some fabulous articles they have published on the above topics...and reading these was a huge relief to me. I have many people that support me...family, friends, and other parents of children with autism...but I always question if my thoughts, fears, etc are similar to these other parents and how they differ from parents of "typical" children. I know a lot of people in the past have told me not to worry about the future yet as there is so much time for research to progress...and a lot of people have given me great advice about how to deal with sensory issues or how to stay "positive"...but this is nothing compared to reading the statistics and comments from parents in same situation that are SOOOO similar to my own thoughts and fears over the last year. When I have enough time on another day, I plan to post some of this information so those who are interested can have some insight into all of this. Like I said, it gave me relief and validated all of those feelings I have had over the last year!
Anyway, thanks again for all the support and for making others aware of such an important epidemic that is taking over our children!
April is Autism Awareness month and I especially want to thank all of those who supported the "wear blue on April 2" event. I was actually attending a conference about Autism and social relationships that day.
I can't believe the Iowa Walk Now for Autism Speaks is only a little more than 2 months away too! The team has raised over $700 so far and we are well on our way to meeting our $2000 goal. Melanie has finalized the design for the t-shirts and I will be submitting the list of sizes to the printers this week, so if you would still like to walk, you have a few days to sign up and email me your tshirt size.
Mike found a great website that we joined that does research on how Autism affects family, finances, relationships/marriage, and many other things. We have entered Brycen's information on this site (IAN- Interactive Autism Network) and have answered a few background questionnaires so far. I have found some fabulous articles they have published on the above topics...and reading these was a huge relief to me. I have many people that support me...family, friends, and other parents of children with autism...but I always question if my thoughts, fears, etc are similar to these other parents and how they differ from parents of "typical" children. I know a lot of people in the past have told me not to worry about the future yet as there is so much time for research to progress...and a lot of people have given me great advice about how to deal with sensory issues or how to stay "positive"...but this is nothing compared to reading the statistics and comments from parents in same situation that are SOOOO similar to my own thoughts and fears over the last year. When I have enough time on another day, I plan to post some of this information so those who are interested can have some insight into all of this. Like I said, it gave me relief and validated all of those feelings I have had over the last year!
Anyway, thanks again for all the support and for making others aware of such an important epidemic that is taking over our children!
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