Sunday, May 19, 2013

Max and Me: An Introduction

By Merely Me Monday, May 02, 2011

“Mommy-Gesundheit!”

 

Max responds to my coughs and sneezes which he hears from all the way downstairs in another room.

 

I continue to cough and blow my nose due to spring allergies.

 

“Mommy! Gesundheit!!!

 

Max becomes louder in his well wishes.

 

I cough and sneeze again. Big mistake.

 

“Mommy! Gesundheit!!! Say thank you!”

 

Although I utter, “Thank you” I am too late in my response for his liking. Max runs upstairs to make sure I say “thank you” and offers me tissues.

 

Max, the ultimate enforcer of politeness, follows the rules he has learned about social rules and interactions to the Nth degree. But the subtleties and nuances of such social interactions are a little harder for my son to comprehend.

 

You see Max has autism.

 

There was a time long ago when I knew nothing about autism. In high school I had seen a reference or two in books about children with autism and these children were usually described as mute, trapped within their bodies, or rocking to soothe their inner pain. Sometimes the word “autism” wasn’t even used but instead, “childhood schizophrenia” to describe this disorder which was clearly misunderstood.

 

Decades ago parents were told that their child diagnosed with autism would probably never speak, would never be independent, and would need to be institutionalized. It is hard to believe but some professionals still say these doom and gloom predictions to parents even now.

 

When my Max was diagnosed I was told similar stories. One speech therapist handed me a brochure for an autism farm where adults would live and work. My son was three years old. “Never too early to think of the future” she said cheerily. I was told by another professional that Max might never talk and that if he didn’t talk soon, his chances would greatly diminish as time passed. When Max was diagnosed I asked one of the testers what we could hope for Max’s future. She told me that she had heard about one young man with autism who had gone to his prom. I questioned whether going to the prom is the pinnacle of “success” for someone with autism or anyone else for that matter. A teacher who came to our home to instruct Max brought a peg board as one of her teaching tasks. When I asked her why she was giving him a peg board when she hadn’t even assessed his skills, she muttered that he was autistic so we start with a peg board.

 

So what is a parent to surmise from all this? My son is hopelessly delayed, will never talk, and we need to buy a lot of peg boards. We should plan his future living on a farm and hey, if we are really super lucky, he can aspire to go the prom someday.

 

Along with the gloom and doom predictions were the claims of miracles and cures. There were books about how a mother cured her son of autism by spending hours with him in the bathroom mimicking her child’s movements. There are books about diets and super supplements which can supposedly change your child’s biology and brain chemistry. There are methods and treatments which purport to eradicate or even defeat autism. For some, autism is a battle to be fought and won. The goal of such a battle is to have a child who is “indistinguishable from his or her neurologically typical peers.” Translation: I want my kid to appear or be as normal as possible. I question whether this is really something to aspire to. After all, who is this “normal” child we hold on a pedestal? Is there room for people who are a little or in some cases, a lot different than others?

5/ 2/11 11:14pm

Hi, Merely Me - I'm so glad to see a site for autism!  My son wasn't diagnosed until he was in middle school, although we knew he was developmentally disabled.  I haven't done tons of research on it because I guess we just lived with it, didn't seem that there was that much information out there about it at the time.

 

As you know, my son, Nick, has been living in his own apartment for about five years and now has a full-time job with the federal government, thanks to the support he gets from a training and jobs program and a personal care agency, covered by Medicare and our county.  I can write more about him at another time, but I just wanted to say that I'm glad to see this site!  It will be a good place to share experiences and information.  Thanks so much.

5/ 5/11 7:22pm

Awww thanks Judy!

 

I am very happy you are here.  I would like everyone here to know how much Judy has helped me over the past years.  You have given me so much support in dealing with these teen years...I can't thank you enough.

 

Yes...please do share your stories here.  I am hopeful that this site will look more like a community very soon with shareposts and a lively back and forth between members just like on the depression site. 

 

Thanks so much for stopping by and for commenting.  You know how excited I am about all this and was so glad to share this news with you.

5/ 3/11 11:11am

 I can relate. Alex, who is 7yr, is very caring to me whenever I'm sick or sad..  I knew nothing about Autism or that he is on the spectrum until last year.. He has been diagnosed with PDD NOS..    I knew something was off.  When he was 2 he wasn't talking and I mentioned this to his doctor and  that's when his speech therapist started coming to our home.. She was the best.  She really enjoyed working with him and seemed to really care about him... He started preschool for speech and motor skills,, just before his 3rd birthday = that was hard.  What helped was that he couldn't wait to get on the bus!!!!

 

When we would go to the supermarket or anywhere he would say to other shoppers,,  "Hi how are you?" and seem to want to start a conversation but that's as far as the conversation would go.

He is going to be in a group next year to help him with his social skills and I want to send him to camp this summer that specifically helps children with Autism with their social skills.

 

 I know most who are diagnosed with Autism are  in their own little world and Alex's teachers say he is sometimes. He has a teacher aid at school to keep him on track.

 

I just got off the phone with his special education teacher and she clarified alot of what I was worried about.  I now know that once a child is in special education he will always be.. I was concerned that Alex was going to be lost in the system..

    

  I've been through this before with my oldest son who did get lost in the system and I blame the school district we were at,, and myself. He was diagnosed with ADHD and emotional problems but I wasn't consistent with staying in touch with the school, especially when he started Middle school. He didn't want to go to school anymore and eventually droppped out.  He has his GED, but I know he regrets not graduating. He told me just recently that he was being bullied then.

 

 I'm mad at the school and myself for not noticing something was going on.

 I remember at that time taking him to the middle school and  a  lady who was like the hall monitor who whould ALWAYS yell at my son. She was awful. I got a bad vibe from her the first time I met her.. I regret not being strong enough, that I didn't have the confidence to go into the school and talk to someone about her and my son't needs... 

5/ 5/11 7:27pm

Hi Pamela!

 

I am so glad to see you.  I know you have been through so much.  It is easy to beat ourselves up for things that happened in the past.  It is hard to be a parent but when you have children with special needs...it gets harder exponentially. 

 

I am sure so many of our members can relate to your stories...troubles with the school system...bullies...and more.  I hope we can have an honest conversation about all these topics and also give some suggestions as to what a parent can do in these situations.

 

Please do keep coming back and I hope you will write a sharepost or two or theree.  :>)  This has been my dream to be part of an autism site and I am very happy you are here to share.

 

Thank you for your comment and I will see you here and on MyDepressionConnection!

5/ 3/11 9:42pm

I think what comes so strikingly in your post, to me, is that everything and everyone's opinion must be challenged, that there is a need for skepticism. That one opinion is not the finish line. While there is a point where acceptance of a prognosis will come, prior to that time, judgment of your child and their ability, their future need not be subjugated to a degree, a position, a person who applies a one size fits all jacket to your child, or even to ourselves.

 

I know you written about Max a number of times on the ADHD site, and it has been a remarkable journey for your family. I think his and your experiences will help people just coming to grips with their own child, and that others can help with their experiences on seeing their child through the teen years and in adulthood where it is necessary, and it often is.

 

The good thing is, they don't all have to be positive stories, that people behind us can learn from all things, even the mistakes. I wish you luck, I know this has been something you've wanted.

 

5/ 5/11 7:48pm

Hey!

 

Thanks so much for coming and commenting.  It means a lot to me.  You betcha I am excited about this site.  It has been a long time coming.  The topic of autism is my passion and I hope to help other parents navigate this journey.  I want parents, family members, caregivers, teachers, therapists, friends, people interested in autism, and individuals who have an autism spectrum disorder to feel comfortable here.  This is a place for all. 

 

Autism is such a broad spectrum but sometimes certain populations are left out of discussions...such as teens or adults.  It is also my opinion that children, teens, and adults who need more care...and have more severe symptoms of autism are not fully represented in autism communities.  I hope to change that here.  I think what happens is that by the time a child reaches their teen years and they still have significant challenges due to their autism...it can be a very lonely time for both the family and the child.  There is no longer the great support once received when they were young children. 

 

I could go on and you know I want to but suffice to say...I want this to be a real community of support and like you say...to acknowledge the challenges and the bad times as well as the joys. 

 

Looking forward to hearing more from you.  Please do come back to share and to comment.  Thanks so much for stopping by.

5/30/11 2:37am

I certainly hope there is a chance. a good friend of mines son has autism and he lives a pretty much normal life. went to college(had to have a little extra help but then i did to in calculas,lol) and is enjoying life now. Another friends son has grown up and is I don't want to say adorable but maybe enchanting is the phrase I am looking for. He lives in a special home. I would give everything I have to see my son walk talk or speak for that matter. He was born premature and died for 20 to 30 minutes. He can show basic emotion. Joy, pain and that is about it. But when he shows his joy he has a smile that lights up the room so I am thankful for that. But yes I feel there is a place for everybody and although some have closed minds don't let them close yours. Just help him live to his potential(everyones is different) and be thankful for anything he can do.

By Merely Me— Last Modified: 04/03/12, First Published: 05/02/11