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|T O P I C R E V I E W
||Posted - 11/10/2008 : 09:57:58
I saw a story in the paper about this website and wanted to tell you all a little about our son who is about to be four and has lived through enough tragedies in his short little life to last him a lifetime. SO, I wanted to share with you a
little of what we have learned in what we would like to call "our
journey through Hell" Our son Mason is about to be 4, he has Aspergers
Syndrome /PDD (NOS). We have spent a year and a half figuring out what makes him
tick and how to keep him safe. A little recap of our year includes,
him driving and crashing the family van, flooding our home,
multiple escapes, stitches, nose bleeds, and us moving to accomodate him, his safety concerns and our financial bottomline....oh yeah, he was also airlifted to childrens where he spent a week on the ventilator due to an overdose! He can pick any lock put on this earth, and bring sane people to tears...but we
love him, wouldn't change him and we are no longer sane so the tears have stopped and we are seeing clearer and have learned a
little about what works for him. If you are interested in any of
this please let me know. Our family approach to life is that if you
can't laugh at it, what good is it..and so that is what we do.
Our son is very physical, freakishly strong, very technical and super smart about certain things. He can name every make of car on the road, but his ABC's are a challenge. He can disassemble flashlights, radios, but can not dress himself most days. We have to keep our eyeballs on him 24 hours a day, 7 days a week...good thing he's super cute! We have learned that for him, he requires large muscle breaks every two hours. Wether it be, Wii boxing, gymnastics, 20 push-ups, or having him run around the house 10 times. Without these consistent physical breaks he seems to literally crawl out of his skin. We have found lots of coping mechanisms over the last year and a half that really work for him. He is not 100%, life is not smooth, but it is about the small victories, a trip to the mall without tantrum, wearing pants AND long sleeves, putting on socks for school and leaving them on for more than 2 minutes. Always revel in those victories, and when someone looks at you crosseyed in Target because your large son who is about to be 4 has a big orange nuk in his mouth, curse them forward and backward in your head and then simply state, "He has autism, would you stare if he was in a wheelchair?"
"been there, done that...survived!"
|3 L A T E S T R E P L I E S (Newest First)
||Posted - 11/21/2008 : 09:50:51
I just want to give a "cyber-nod" to this posting as a (step)mom of a 13y/o with AS. My biggest consumption is my son's future. It seems as if he will never be capable of living completely independently..................then again I don't want to totally dismiss his ability to do things we never thought possible. I have soooo many concerns about the logistics of becoming an adult to go along with the more social/emotional concerns. One of which is medical insurance. If he is not a full-time college student after High School he will lose the benifits we can provide him. I've done some lax research on medicaid, and SS Disability, and such, but I've found no concrete answers. I know the details will all work out in time, but these types of anxieties are ever-present. I just wanted to validate that this is a shared concern......a VERY important one............and one that will not go away. But it is that fear and anxiety that proves to us the depth of care we have for our loved ones.......
Live like there''s no tommorrow by making up for all your yesterdays TODAY! ----Miltay
||Posted - 11/12/2008 : 10:33:56
This blog entry by kadinmn was moved here (by Craig Evans) because of its relevance. 11/12/08
Share What You Know
Tuesday, November 11, 2008 @8:47:20 AM
As a parent of a young adult with AS, I am constantly seeking resources that might help us find answers to such questions as : We live in the suburbs. What transportation options does my child have since she doesn't have a driver's license? What are options to living at home for her since she is not yet ready to live on her own, but may be ready to live away from mom and dad. Should we become our child's legal guardians?
If you are a parent in similar circumstances, please share what you have found out. Many times, parents with kids who are high functioning choose not to share their child's diagnosis of AS. either because they are in denial about it, are embarrassed by it, or think it is better for their child not to share this information. I respectfully disagree. The best thing we can do for ourselves, and our kids, is support each other and share what we have learned so they can grow and develop to the very best of their potential.
Autism Hangout has given us and our kids a safe place to share. Let's make the most of it.
Autism Hangout: Learning, sharing, thriving!
||Posted - 11/10/2008 : 10:06:21
Wow, Brooke. What a great story! And what a remarkable attitude you have (it's inspirational)!
Your "muscle break" concept for helping with Mason's energy is very helpful. Wii is a device with amazing potential for kids with video game aptitudes.
Here's to more little victories to all of us living with autism!!
Thanks for sharing. And welcome to the Hangout!
Autism Hangout: Learning, sharing, thriving!