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Autism Journey continued (Day 2) PDF Print E-mail
Written by Gayle Nobel   
Tuesday, 03 April 2012 22:41

I'm going to share more about my experience with my brother Philip.

After he moved here, he lived in a couple of different institutional settings. I don't know what the process was for my dad to find these places because I was not involved. I remember visits with him in my early teens. They were often awkward and uncomfortable and the institutions where he lived were not too nice. In fact, he was abused and we have the gruesome photographs to prove it. At some point, my mom and I stopped going but I don't think my dad ever did.

During one of Philip's hospitalizations, a volunteer made a connection with Philip and continued to see him for many many years after that. Philip was beginning to have a life outside of the institution. He went hiking and traveled and spent time in his new buddy's home over a long period of time. My dad even made him co-guardian.

When they closed down the institutions here in Phoenix in the year ?, Philip moved into a group home run by the state where he still lives today. This was quite a step up from the previous living arrangements. At least it was a home environment. I didn't see him for many years. By that time, I was starting my own recently married life and having my own children. For a long period of time, I confess to not wanting to visit him because I was afraid to see Kyle's future. I was scared of what the adult years would bring for Kyle.

When I  took over guardianship in 1995 and attended the first ISP meeting, I met Philip for the first time in both of our adult lives. And it was ok. There was nothing to be afraid of after all. It was shocking to see he was a grown man but when he looked at me with those big blue eyes, all I could see was his sweet sweet soul. He was my brother, yet he was a stranger.  It was hard for me to feel connected to him because we grew up apart. It's been a process for me to find a way to connect and he's the one with the autism :-).

We have a long way to go in supporting adults with autism on all parts of the spectrum. But we have come so very far. I worry about Kyle's situation after we are gone but I also trust we will somehow figure out how to create something good.





Last Updated on Tuesday, 03 April 2012 23:58
 
Journey in the Land of Autism (Day 1) PDF Print E-mail
Written by Gayle Nobel   
Monday, 02 April 2012 22:04

This is the first day of my Autism Awareness Month Blog-a-thon. I'm officially committing to 30 blog posts in  30 days. This means I am already a day behind so gonna have to find a day to post twice. All encouragement from readers is welcome.

I've read some conflicting opinions about Autism Awareness Month which I will probably explore as days go by. Would autism acceptance month be better? People who have autism seem to believe so. I'm thinking awareness has to be present before acceptance though. Lots to ponder here but not today.

For today, I am reminded of  how far, as a society, we have come. I would like to share some tidbits from  my autism journey.

I have been connected to autism since the age of 16 months. I was just a toddler when my brother Philip was born and I don't remember anything about that time in my/his life. I don't know how my parents felt when they first realized Philip was not developing typically.  There wasn't much known about this mysterious thing called autism. Medical professionals told parents to institutionalize their children for the sake of their other children, so the child wouldn't get too attached to the parents (pretty bizarre!), and so professionals who knew what they were doing could take over in teaching/caring for the child, and to take the burden off the parents.  I don't think they really knew how to advise parents to help their children.

I can't imagine what it felt like to be told to institutionalize your child! ESPECIALLY, given what institutions were like back then. My heart hurts just thinking about it. You had to be tough as nails (like Temple Grandin's mom) not to take this advice and to keep your child, who was very difficult to manage, at home. Back then, you didn't question or argue with "professionals".

Having a child like my brother Philip in the 60's was a hush hush affair. Even I didn't know  why my brother did not talk or play, what he had, or why he didn't live at home. I have very few memories of my brother in our house because he did not live at home past when I was about 6. We visited him in various places for short amounts of time. That is my only childhood memory of my brother. We did not talk about him very much and my parents went about their job of creating a "normal" life for me. I don't remember even hearing the word autism until I was a teenager. My brother was on the low end of the autism spectrum so it wasn't because he was diagnosed later on. People just didn't talk openly about these things back then. OR at least my family didn't.

The refrigerator mother theory of autism  was still being tossed around.  This theory said that autism was due to cold mothering. It was a psychosis. What a heavy emotional load for a mother to carry around! I cannot begin to imagine the pain my mother endured. There was no one my mother could talk to or get support from. Neighbors were sometimes cruel. Even I was aware of that.

My mother never really recovered from the anguish of having my brother. When Philip was a  teen my dad stepped up and moved him to Arizona to live in another institution. We had moved from NY a couple of years before. My dad was the one who took care of everything. When he was dying, he had appointed my mother as guardian, or if she refused to serve, he appointed me. I have been guardian for Philip since 1995.

I am grateful my own son Kyle was born in the 80's and not in the 60's.

Yesterday I was an exhibitor at the Tucson Autism Walk. There was a happy energy flowing through the crowd. It was great to see children of all ages and degrees of autism walking with their families. I talked to many parents who were dealing with the intense challenges of raising a child who is so different and has so many special needs. I was grateful to be able to share the wisdom I have accumulated on this journey by offering my books. And, most importantly, by sharing a few words of support and encouragement from someone walking  a similar walk.

Today, I am grateful to be standing here in  2012 with heightened autism awareness which hopefully will lead to more autism acceptance in times to come.

Me & Philip

 

 

 

 

 


Last Updated on Monday, 02 April 2012 23:34
 
Who is Happy? PDF Print E-mail
Written by Gayle Nobel   
Wednesday, 28 March 2012 02:27

Gratitude is the mother of happiness.

Last Updated on Wednesday, 28 March 2012 02:32
 
Tide's In PDF Print E-mail
Written by Gayle Nobel   
Friday, 23 March 2012 16:25

Jeff Stimpson is a guest blogger on AutismWithAttitude today. Our children with autism challenge us daily. This reminds me that sometimes, well maybe often, you just have to go with the flow and also remember to have a sense of humor.

~~~~~~~~

At the register, I ask Alex to take stuff from the cart and put it on the belt. "Alex, take out the ham and put it up there for the cashier. The ham, Alex." He then appears to be moving on to the toilet paper and the bag of green peppers; good time for me to manhandle up the carton of Diet Coke. I get the Coke up there and I turn around thinking Alex is still helping take stuff from the cart. Isn't that great! He's learned-"

I spot him vanishing into the LAUNDRY AND HOUSEHOLD aisle. Again.

For months he's darted like a dragonfly into the LAUNDRY AND HOUSEHOLD aisle of supermarkets, drug stores, Target and Wal-mart almost the second after we enter the stores. Invariably he finally stops in front of the rows of fat plastic orange jugs. He pulls one down: sometimes Regular, sometimes Fresh Mountain Scent. Other flavors include Free & Gentle, Touch of Downey, Sport Active Fresh, Actliift (Clean Breeze and Fresh), April Fresh, Bleach Alternative, Fabreze Freshness, Renewing Rain, and Renewing Rain Scent, among others. I'm unsure which Tide Alex favors.

Tide's been ugly. One exhausted night in a grocery store this summer Alex bolted from the register and found the Tide aisle, and when I found him he met my eyes for about a second and then zipped in the opposite direction. I was ... unpleased. One part of me felt I had a right to be mad; another felt I should try harder to understand him.

So again autism makes me ask weird questions. "What do you like about Tide, Alex?" He waps the white plastic cap (Color Safe Whitening ... 26 Loads [Lavadas]). "Wanna Tide!" he says, hugging the jug like he would a teddy bear. Is it a toy or a tool for a future job?

Is this related to Alex bolting into laundromats, which he's been doing for months? Zip and in past the front-loaders and the dryers and the wide-eyed owners. After lassoing Alex in these places, I've tried to make it clear to him that he's too large to run full speed into crowded businesses anymore, that he might plow someone over. That he should walk in. Modify the behavior.

Modify the Tide: Maybe Alex should pick up the Tide when we enter the store, lug it around with him as we shop, and leave the jug by the register when we leave. We try this. "Alex, we're not buying Tide ... "

What do you like about Tide? Do you like it because you know what it is? What's it used for? Alex stares at the ceiling of the store and says, "Tiiiiiide..." I point to the label and ask if Alex knows this word. "Bleach!" he says. I take his finger in my hand and letter by letter we spell "Alternative." He moves his finger over the label. "T – I – D – E. Tide! Ha!" Alex's laugh echoes off the gleaming mascara display nearby.

When it's time to return the Tide to the Tide shelf so it can be with all the other Tides, Alex, almost with love, slips the orange jug back. I tell him it's time to leave the store. He grabs the jug again when he thinks I'm not looking.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family's Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger's Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under "Jeff Stimpson" and Twitter under "Jeffslife."

Last Updated on Monday, 26 March 2012 22:25
 
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