Only rich kids have disabilities, the poor are just dumb

From the moment my son was born, I have found myself eating my own words.  You'd think I would have learned by now.  Really, they are not tasty words either.  Last night as my husband and I were returning home from a visit to the neuropsychologist’s office, I turned to him and announced, "Hey hon, we are officially rich now."  He looked at me strangely and asked if I was referring to Obama's decision to extend tax cuts.  No, I was reminded of a conversation I had with him years earlier which stuck in my mind.  Shortly after I graduated from college, I went to work for an asset management firm which catered to the country's ultra wealthy.  My responsibilities extended well beyond the financial.  I remember completing college application forms for my bosses' kids and personally delivering them to NYU in a chauffeured vehicle.  I also remember drafting letters to the admissions office.  That is how I learned that both his children were diagnosed with learning disabilities.  One had Tourette's Syndrome and the other child had dyslexia and a number of other conditions I do not recall.  As I heard of more and more children being diagnosed with an assortment of conditions, I had the strange feeling that this was entirely new (I don't recall any classmates or friends having any of these diagnosis) and I noted that the children being diagnosed came from families who fared well financially.  I jokingly mentioned to my husband at one point that apparently only wealthy kids had disabilities, the poor are just dumb.  I realize this statement may seem highly insensitive, so I will explain what I meant.  Really, I just felt that there are just as many children from less affluent families who have the same disabilities, but are not being recognized as such and are not receiving the services they need.  I feel even more strongly about this now.  Tristan's assessment is not yet complete and we have already spent $6,000.  I feel truly privileged to be in a position of being able to afford the cost.  I know many people are not so lucky.  I wonder how many children go through their lives being labeled as "lazy, stupid, dumb, careless and aggressive" when a more appropriate label would be "dyslexic, developmentally delayed, mildly affected, etc."  I know we ourselves fell guilty to labeling our son as "lazy" when he could not dress himself and failed to perform tasks involving several steps.  We now know that he is not lazy at all and it is just a manifestation of his Asperger Syndrome.  All of Tristan's teachers expressed their concern about his inability to complete tasks, his delayed reactions in general and the difficulty they had integrating him to the group.  However, most felt that this was all due to his personality and two of them suggested that we stop "coddling" him so much.  His current teacher has been amazing.  She even apologized for thinking that he was "lazy" and now says that she recognizes he simply cannot do things at the same pace as the other kids.  The manifestations of his Aspergers are so subtle that they were easily missed.  Although I once shunned the labels, I can now say that I am happy he has gone from being "lazy" to being a child with Asperger's. 
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How far does the genetic apple fall from the tree?

Inevitably, once your child is diagnosed with an ASD, the question will arise as to whose got the faulty family tree.  In our case, we know both trees to be rotten.  Really!  There is sufficient evidence that indicates a genetic component to Asperger Syndrome.  I am not sure that either one of us would be clinically diagnosed as having an ASD, but between us we have a preponderance of traits.  As I mentioned earlier, my husband has a huge problem with forming and maintaining relationships.  We have had many discussions about this throughout our marriage.  Even though he has reiterated that he does not feel the need for friendships because he has enough interests to make up for the lack of social interaction (he loves to jog and is a wine enthusiast) he does occasionally complain that he feels isolated.  He tells me that he "has always had a feeling of not fitting in anywhere."  As for myself, I have struggled with anxiety my entire life and have had several episodes of panic attacks.  I also suffer an occasional bout of depression which typically last several months.  I have a huge problem with change in my life and I have hypersensitivity to sound.  Tristan's doctor was particularly interested in the panic attacks.  I am not sure why that is the case. 

My good friend tells me that "we all have our issues" and I couldn't agree more.  Most people I know do have their own set of issues.  I guess it really does not matter why our son has AS although you can't help but wonder.  I wonder if taking my prenatal vitamins would have made a difference.  I couldn’t take them because I would vomit immediately.  I wonder if it was the medication my doctor prescribed for morning sickness.  I guess we will never fully understand the why.  I do know that I love him just the way he is. 

The 7 Year Puzzle Comes Together

It is our first meeting with the child Psychologist and she asks when the first time I noticed something unusual about my child was.  In all honesty, until a few weeks ago I had no idea there was anything wrong with him.  Yes, there are things about him that are a little bit odd, but nothing that alarmed me to the possibility that he may have a problem.  My husband, on the other hand suspected it long ago.  He did so not because he found Tristan's behavior odd or concerning.  It was a serendipitous discovery.  I will discuss that later since it is a story that will make you believe in fate (or something).  Well, we had to open up the closet and let all the skeletons out.  We talked about my brother's schizophrenia and drug abuse, my struggle with anxiety and depression and my husband's self imposed isolation and lack of friends.  Luckily, my father's death due to AIDS did not come up as a topic of discussion. 

When my husband first brought up his suspicions, it was as we were walking to the train on our way to work.  We had just had a meeting with Tristan's first grade teacher.  I requested it to discuss some issues he was having in school.  Really, I thought I would just reassure her that he always experienced these same problems at the start of each year (nursery, preK, Kindergarten had all been the same).  She indicated the same concerns each teacher had voiced in the past.  There was a problem integrating him into the group.  He could not complete his tasks and he was very slow in doing such things as getting ready to go home.  She suggested that maybe I "coddled" him too much and really needed to have him be more independent.  "These are skills he should have mastered years ago," she said.  I left wondering what the big deal was if it took him a few more minutes to put his coat on.  As we walked out of the meeting my husband said "Do you think he may have a problem?"  I was sure he did not.  There was a short silence and something made me think he had a particular concern so I asked him what it was.  He then asked me to look up Asperger's in the internet and I obliged as soon as I got to work.  I did so to check it off the list as a possibility and initially I did just that.  Tristan did not exhibit any of the classic symptoms on the checklists I pulled up.  He is not shy, he does not rock or flap his hands, he wears anything I put on him, he is loving etc.  However, as I looked further I found some very detailed lists that gave me cause for concern.  He cannot ride a bike (even with training wheels), he covers his ears often when the environment is too loud, he cannot maintain eye contact and is clumsy, he lectures us and is obsessed with war and the military.   I felt relieved and sick in equal measure.  Everything now seemed to make sense.  The puzzle was coming together.