Friday, April 5, 2013

Autism Awareness Month

April began autism awareness month.  I'm not going to list statistics, you can find them all over the place, but for most of us, we've either heard about or know someone with autism.  The person I know, is my son.  He was diagnosed when he was almost three years old.  It was a little frustrating at first to know, as a mom, that instinctually, I knew something was not right, yet everyone argued he was fine.   When I finally hit my limit (they say when you hit rock bottom, you can only go up from there) I took him to a pediatric neurologist who ran every test in the book on him.  She said she was very impressed by his motor skills.  I thought this was great.  She left the room a few minutes and came back, laying a stack of handouts next to me and the words are forever etched in my mind, "Don't panic, but..."  She went on to tell me my son had autism.  That there was help we could get and this wasn't the end of the world.   She said she'd never seen a child with this level of autism have such great motor skills.  I stared at the papers in my hands and wondered what this meant.  I had heard about autism, but I thought those kids were confined to beds and wheelchairs or couldn't talk correctly.   My son struggled with speech and only said a few words, but I didn't think that constituted autism.

I brought the paper work home and poured over it.  He had everything listed.  Some more mild than others, but he hit every checked box on the list.  I decided this wasn't good enough, I may be convinced but that didn't mean it was reality.  Perhaps this particular doctor just thought she saw something she didn't.  I got a second opinion.  We weren't there 10 minutes and the doctor said without a doubt: autism.  I got a third opinion.  This time from a psychologist.  Autism.

At this point, most parents are overwhelmed.  I suspect I must have felt overwhelmed but there's something that happened that shocks or offends most people:  I was relieved.  I was so overjoyed that it wasn't something I had done wrong, it wasn't my failure as a parent, it wasn't some brain tumor that was incurable in my child, or worse, he was normal, and I just couldn't handle parenting.  I think I could have dealt with those things and improved myself, but in that moment, as selfish and awful as it sounds, I was relieved.  Relieved that I wasn't imagining things, relieved that we could get help, relieved that he had hope for his future, relieved that we could work together and make life better.  I cannot express how low of a point we had gotten to.  I could not handle him.  He wouldn't talk, he wouldn't cooperate, he didn't listen, he didn't seem to hear...  He was obsessed with cars and trains and only smiled at them, never looking me in the face or addressing me, he wouldn't play with me, he would climb and pick locks and break open medications.  We spent three Christmas's in a row at the ER because of my distraction and his competence in cracking child safety locks.

I always call the psychologist an angel.  After a week of calling places, leaving messages and never getting  callbacks, or worse, a callback that said we could be seen in the office in 6 weeks (their earliest opening,) I called this little tiny number on the back of the reference sheet from the neurologist, which I hadn't noticed before and a man answered.   I asked for the doctor, and he said that was him.... I panicked a minute feeling a little embarrassed that the office had given me some poor doc's personal number and here I was bothering him at a bad moment perhaps.  I apologized and asked for the secretary's number so I could make an appointment, to which he replied, "I have no secretary or office staff, is there something I can do for you?"

From that day on, he came to my house, assessed our situation, my son, and our lives and put me on a winning train.  I got lucky.  So very, very lucky.  I have days that it seems all the worst luck in the world is pouring over me, but in that moment, perhaps, I should remember, finding this for my son used up every ounce of good luck I had.  And it was worth it.  My son, my family, we needed help and we received the best in the world.  The doctor would come to the house, observe our routine and my son's behavior and gave me all the tools to make things work for us.  My insurance gave me fits, they didn't want to pay, they didn't want to cover it and I scraped and saved and paid out of pocket.  I couldn't lose this doctor who had done such miracles with my child, with me, as a parent.  It was so worth it.

Four years after we started an intensive therapy regiment,  I stopped by a friend's house whom I hadn't seen in a while.  As we came in and started chatting, she stopped and pointed to my son who had said hi, and asked about her pets, and she said, "Is this even the same child?  I would never have recognized him by his behavior, he's a totally different person."   I cried.  I never thought he'd be seen as "normal."  I never thought people would see him as just another kid.  But it's happening, and still does.  Oh, sure he has all the autism quirks and some odd behaviors, he'll never be free of it.  However, he's been such a trooper in this life that handed him something he didn't ask for.  He's positive and intelligent and full of life.  He's my salvation and inspiration many days, knowing that he's' changed my whole life for the better and I was able to change other things that were no good for us, just by his existence.

This doesn't mean my other children don't have a special place in my heart.  They have their own unique qualities and talents.  Since today is autism awareness day, I wanted to tell this story.   It has somewhat of a happy ending, others do not.  He is not grown yet either, so I don't know what life has in store for us.  So far, it's been a wild ride, a great experience and a blessing beyond what I ever could have asked for in this life.

Many parents go gluten free for their autistic kids, some show improvement, others, like mine, did not.  We do gluten free for my allergy, but for my son, it's bland as usual.  I know some of the people who use my recipes are looking for more kid friendly versions and I try to keep that in mind.  However, most kids just want "normal" food.  There are lots of websites that use rice flours and such to recreate a more "normal" kid food, but I just can't do that.  I buy organic cereals and chicken nuggets and hope for the best.  I do not make my kids eat gluten free because I have to.  I certainly don't make them sugar free either, even that is difficult for me most days (who doesn't have a sweet tooth?!)

I do however have a shop, which sells teeshirts if you're interested. I don't make a ton of money off them, but I do own one and love it!  I created the design myself, on paint, and it's very cute and versatile.  Looks good on men and women.  Check it out if you're interested and come back soon for more recipes.  Since today's post is long, I'll probably do the recipe this weekend.  I have some great experiment successes!

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