Thursday, June 21, 2012

It's everywhere. Do you recognize it?

Have you ever noticed when you buy a new car, suddenly you see that particular model and make all over the road?  Or, when you are thinking about getting a particular breed of dog, that breed is on leashes all over town?  It isn’t because people have suddenly gone out and gotten the same thing you are interested in, but it is because you are more “in-tune” to that particular thing and just noticing it more.  This is what happened to me when Tate was diagnosed with autism, and then again when I learned about Fetal Alcohol Syndrome.  I didn’t even know what autism or FAS were, really. Then suddenly, I was surrounded by people on the autism spectrum and by people whose mothers (in my mind) had to have consumed alcohol while pregnant.  I saw, and continue to see, the quirks that are stereotypic of autism and FAS, all around me.  I can recall people from my childhood who had many of the same issues Tate has.  Children and adults I have known, in the past and present, are always under my scrutiny.  Half the world seems to have autism, or at least, some of the characteristics, and the other half have been affected by alcohol or drugs in the womb.  Of course I am exaggerating, but I do see it almost everywhere I go.  It is because I am so aware of all the quirks Tate and Sydney have, and for now, it is what I am most interested in.  Autism and FAS are my passion right now as I try to help these two precious children that have been entrusted to me. 

Think back to your school years.  Do you remember the awkward kid(s) who just didn’t fit in anywhere?  They didn’t know how to start a conversation.  They probably didn’t dress stylishly and maybe didn’t even comb their hair.  They might have been much more comfortable with adults than peers.  How about the kid who ALWAYS wanted to talk about “Star Wars” and nothing else?  You probably knew a kid with autism, aspergers, or at least some of the characteristics.

Shawn and I ate at a restaurant a couple weeks ago.  Sitting at a table next to us was an elderly couple with their two grown sons.  Both sons had autism.  Autism is easy for me to recognize now.  I saw the stereotypic stimming, the limited eye-contact, the poor social skills, and neither of the men seemed to feel the need to wipe their chins.  Their mother made sure the chins were wiped.  Tate wasn’t with us that night.  I wondered if the mother of those two boys would have looked over at our table and saw the same things in my son I was seeing in hers.  I wanted to go over to their table, pull up a chair and introduce myself, ask her some questions about her experiences, and meet another mother who could understand some of my feelings and experiences.

I found, getting a diagnosis of autism for my child was like becoming a member of a club, “the autism community,” some people call it.  We all have things in common.  We talk about autism (A LOT) and we are always comparing notes, looking for ways to help our kids be successful.  Some of the best friends I have, I have met through Tate and his therapies.  If I were asked to think of any benefits of having my child diagnosed with autism, I would have to start naming people.  I have been inspired, humbled, educated, and encouraged by many of the people we have met along the way; some of whom have had a much harder road to tread than I.

Years ago, when I first heard about Attention Deficit Hyperactivity Disorder (ADHD) I was a young mother of several typically developing children.  I believe I first heard about ADHD on a news program.  My children were well behaved and they responded well to discipline.  It is all I knew.  I had typically developing children.  I thought ADHD was a label being put on children to excuse their parents for never teaching them how to behave.  I believed there were a few of them with legitimate issues of some kind, but I just could not understand why the majority of these kids were not able to behave like typically developing children did.  I’m embarrassed that I ever had that opinion.  Not all these children have the same reason for their inability to sit still and concentrate and learn.  I don’t know if doctors are blaming ADHD on genetics or toxins or alien abductions (haha) but I have seen a lot of kids with ADHD since I began volunteering at the grade schools in the past few years.  Most of them are sweet kids, with great parents, and they try really hard to behave.  They just cannot sit still and they cannot stay focused on the tasks at hand.  Sydney’s ADHD probably came from her FAS, but not all kids with ADHD were exposed to any drugs or alcohol in the womb.   

I also used to think the world was over-medicated.  Now, I believe medication is a tool that should be used.  I’ve seen so many children the past few years in public school that would probably benefit from a prescription like Sydney’s.  She does not have the ability to sit and focus and she could not learn until she began medication.  Now she can sit and focus and learn.  The medication cannot cure her or even boost her IQ, but it can help her to focus long enough to learn what she can.  Kids like Sydney are not uneducable.  They just need help.  There is potential that cannot be tapped without the help of medications.

In this post and others, I have talked about Tate’s diagnosis and the doctors we saw initially.  The way autism is diagnosed is changing.  The labels given will soon be different.  In recent years a doctor gave a person a diagnosis of autism, aspergers syndrome, or pervasive developmental disorder not otherwise specified (pdd-nos).  A person with aspergers syndrome usually has social deficits and narrow interests, but above-average intelligence. A person with aspergers would not have had a language delay, while a person diagnosed with autism would have had a language delay or even be non-verbal, in addition to their other symptoms.  The diagnosis of pdd-nos is given when the doctor sees many of the symptoms of autism, but not enough to have the diagnosis of autism.  The doctor who diagnosed Tate on the spectrum, when Tate was two and a half, gave him the diagnosis of pdd-nos.  He called it a “high functioning autism.”  Because Tate had a large vocabulary and communicated well for a while and then regressed and lost his ability to communicate, the doctor also said Tate had “regressive autism.”  Because autism spectrum disorders all fall under a huge umbrella, there are categories and subcategories a person can be diagnosed with.  That will soon all be done away with.  I have been reading, beginning in May, 2013, the diagnosis of aspergers and pdd-nos will no longer be given.  To receive a diagnosis on the autism spectrum a person will now have to have a communication delay, and exhibit every other symptom of autism, thus doing away with the asperger diagnosis and pdd-nos.  A person on the spectrum will be autism level one, two or three.  Level one is a person who needs some support, level two will be a person who needs substantial support, and level three will be a person who requires very substantial support.  I believe Tate will be considered level two.  It will be interesting to see how this new way of diagnosing children will affect the help a child receives in school.  The label given to Tate does not change the amount of help he needs or who he is.  Autism spectrum disorder, Level 2 autism, pdd-nos, or special needs; the label is hardly important.  He’s my little boy and he needs help to learn and navigate throughout his day. 

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