Tuesday, April 28, 2009

Autism Awareness

I haven't posted in a while and realized today as I was reading a friend's blog that I have almost let all of April get by without getting in my plug for Autism Awareness Month.

Just a few simple facts... 1 in 150 is the rate of autism currently... that means essentially that everywhere you go every single day you are likely to come across a person with autism. That most likely you have a family member somewhere in your extended family that is living with autism! The rate of autism is higher in boys than in girls.

The most important thing I think people should know about autism is .... if you have met one person with autism ... you have met one person with autism! The next time you see a mother struggling with her child in a public place please be kind and consider that you may be witnessing autism and not just a poorly behaved child or an inept parent!

People with autism struggle with sensory issues...meaning that the world is often too bright, too loud, too intrusive and just too TOO for their comfort! They struggle with speaking and understanding...some are nonverbal and some are very chatty but may not always make sense as they do not understand that what is in their brains isn't in everyone else's brains at the same time. They don't understand personal space or social norms....those nonverbal cues the rest of us get escape their notice. Sometimes their cognitive abilities are less than others and sometimes greater. Most of all it's pretty hard to be them so be kind and gentle.

Today I became an Internet stalker...yep folks that's my confession! It's kind of a long story exactly how that came about but here goes! I have a friend who I have known since our oldest children attended preschool together. She was in nursing school at the time and I often helped out with childcare when her regular provider was unavailable. She was there when my child was diagnosed with a genetic syndrome and then later with autism. She was supportive but at a loss as to what to do to help me. Being my friend was the best thing she could do and she did it well! She remarried and had more children and moved to a town 30 minutes away. She realized when her daughter was just a few years old that something was amiss. Soon she called and told me those words every mom in our club dreads hearing "We received bad news about Catharine today..." she began.... " they think she has autism" My heart shattered into a million pieces for her and for the beautiful Catharine and for my sweet Ainsley.

This was followed by her determination to find answers to help her child... special diets, therapeutic riding programs, medications, supplements, therapies of all sorts. She sent me a card during that time explaining that she now understood why I would sometimes drop out of her life for months on end because sometimes it's so easy to get so focused on helping your child and sometimes in wallowing in self pity that you forget your friends. She was now a card carrying member of the club. She got it. How I had wished for a friend who got it! Now I was so sorry and worried that God had misunderstood my wish!

Flash forward a few years and my family relocated 3 hours away followed by her husband being deployed to Japan and her going to Pennsylvania to live with her parents while her husband was away. A few years in we just lost touch! Today I was determined I was going to find her... I searched Facebook and didn't find her but did locate her son which said he was now living in the town we had both started off in. I had been looking for her in Northern VA , Maryland and Pennsylvania where I had thought they were planning to live once her husband left the military! With this new information I Googled my friend's name and found her listed as a helper in a local soccer league and then more listings in her church newsletter. I found an email and sent her a short note explaining how I found her and hoping to reconnect. She responded also happy that we had found each other again!

Another thing I found while stalking her was an article she'd written for a magazine her sister in law started. She also has a child with special needs although I do not know what her diagnosis is... I just remember them being in those beginning stages of "hmmm something seems off with my child" when I last saw them. I am frequently amazed at what superhuman lengths those of us in the club go to to help our children and to share information with the world. We all want a world that can embrace our children and see beyond their deficits and see their gifts! In a perfect world having autism or Down Syndrome or any other diagnosis thought of as a disability would just be one more thing we know about that person much the same as knowing their family is Irish or they have blue eyes.

I have heard Mel Levine speak many times and I once heard him comment that childhood is the only time in life that we spend so much time focusing on our weaknesses rather than our strengths! As adults we gravitate towards things we do well or enjoy and no one chastises us for not being good at everything yet we do it to children without a thought! My child is an amazing artist ...just amazing and sometimes it just sort of aggravates me when people say "wow I can't believe she can draw like that" when their expression somewhat adds "since she has autism, is mentally retarded, has a genetic syndrome" Everything our children can do is somehow diminished because they have a special needs diagnosis.

I read an article today by a mother of a child with autism where she called autism an intruder. She isn't fond of this intruder and is tired of people making nicey nice comments about it. I agree with alot of what she says! I have a friend who grew very tired of people patting her and saying "well God just knew he was giving this special child to a wonderful mother who could handle it" and once replied to some poor well meaning church lady "well if that is true in my next life I am going to come back as a horrible b*%$#!" I have to agree that I sure hope God isn't sitting up there deciding which of us are "good" enough to receive such a child! I can't imagine that God would intentionally make any one's life hard or use a child to teach other people a lesson. That would be too cruel!

My child is perhaps the wake up call I needed to help me sort my priorities, to help me slow down and appreciate life more. She's perhaps the help I needed in showing my soft underbelly to the world that thought I had it all together. She's made me "more" and I strive daily to help the world know she isn't "less" because of a label.

So the next time you see a poor harried mother dragging her screaming child through Wal-mart or trying so hard to reason with a child intent on having every variation of My Little Pony all at once cut them some slack... you may be seeing a mother who is a card carrying member of my club ! I bought a tshirt for a friend's child that read "I am not a brat, I have autism, Please be kind to my mother" . Hopefully one person will see that and take a step back and offer help or better yet not offer "help" because spanking does NOT cure autism!

If you are happy and you know it... flap your hands!


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