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Not Even Close: Raising a Child with Autism

By Karen B. Mariscal

I came by my work as a special needs lawyer naturally, in that my husband and I have a severely autistic son, our first child, who is now a young adult.  We have navigated the educational system and the transition years, and Billy is now attending a community day program at the Charles River Center in Needham.  At this point he still lives at home, although we are working on creating a group home for him in Framingham.  Here is my story.

“Not even close.”

This is what I said to my pediatrician when she asked me the very simple yet profound question “What does he do when you ask him to go get his shoes?”

Those words changed my life forever.  They came out of my own mouth, but I knew without a doubt the minute I uttered them that my life would be changed forever.  I would be transformed from a
mother of a happy healthy baby to a mother of an intellectually handicapped child.

Not even close.

Our first child Billy was 15 months old when I said those words back in 1993, and at that point I had barely heard the word “autism,” much less understood what it meant.  To the extent I was aware of it at all, I would picture someone sitting in a corner, playing with a ball of string, never interacting with the world.  This is certainly not something that could happen to a child of mine – it only happened to other people.

So my journey into the strange world of autism began with a question about retrieving shoes.  As a first-time mother, I had no idea that a 15-month-old should be understanding language by then, and even maybe saying a few words.  My baby crawled and walked on time and was beautiful – how could there be anything wrong?

In fact our pediatrician already had us on a watch list because there were physical signs that Billy’s brain had failed to grow normally.  When I uttered those words, she immediately started calling pediatric neurologists to try to get me an appointment.  We were in New York City, and she had good connections, but her phone calls had a touch of desperation about them.  She finally told me that the only person who could see us was the head pediatric neurologist for a very prestigious New York hospital.

I said why was this bad?  The top doctor at a top teaching hospital?  Sounded good to me.  She explained that he had a poor bedside manner, and she was trying to find someone who would treat me more kindly, but no one else was available.

The months that followed were the worst of my life.  The doctor was all that he was said to be, and the only thing positive I can say is that by seeing the head of pediatric neurology, I am comfortable that we didn’t miss anything medically that could have fixed the problem.  He was unable to give Billy a diagnosis at that point, other than developmentally delayed.  He didn’t know how Billy was going to develop because of his brain growth problem, which is not usually a symptom of autism.  In fact he never even mentioned the word autism to us.  He said “Take him home and love him; there is nothing I can do for you.”  So that is what we did.

Also we got connected with Early Intervention, where Billy had a full evaluation of his many deficits, and speech therapists started coming to our house.  I remember talking to the first one about the situation, and saying “You mean there are people out there that don’t talk?”  I had never encountered such a person, and seriously had no idea such people existed.

She said, very gently, “Yes.”

I said, disbelievingly, “Why haven’t I ever met any?”

She said I probably hadn’t noticed them because they are usually with their parents.  That statement should have been quite foreboding, but again, that is something that certainly would not happen to me.

The pain in finding out that my child was not normal was quickly surpassed by the difficulties we experienced in raising a severely autistic child.  It is a 24/7 job that requires a team of people – in my experience, no one person can successfully do it alone.  There were plenty of times that I regretted having Billy.  I clearly remember thinking:  “If there was a button I could push that could make him go away, with no ramifications or guilt, as if he had never existed, I would push that button.”  For us the problem was not that he was developmentally delayed, the problem was that he was always in motion and always into trouble – particularly with water, he always wanted to pour water on the floor or wherever, making a flood.  To this day, my husband and I are physically incapable of letting the water run in our kitchen sink – after all these years of trying to get Billy to stop turning the faucet on, the noise drives us absolutely crazy.

For years of our lives, our main goal was to make it through the day.  We had two other children following Billy, who were easy to raise, relatively speaking, but still added to the load.  Billy did not always sleep well, and we all know that caring for little children with no sleep is no fun.  I remember talking to my sister on the phone at 9:30 a.m. one Sunday, and saying, “I have been up since 6 a.m. and I am completely exhausted.  I am done for the day.  I can’t believe I have another 11 hours to go, just today.”  And that was how I felt every day for awhile.  (I  HATED weekends; loved going to work when Billy was at school.)

Billy is now in his 20s.  He has grown into a fine young man – we never thought he would be able to settle down and participate in ordinary life like he can now.   We thank the Wellesley school system, the LABBB collaborative program in Lexington, the Department of Developmental Services, the Charles River Center, Camp Starfish, Camp Horizons, and most of all our family and friends for their love and support through this process.  It certainly takes a village.

Now if you were to ask me if I regret having Billy, or would like to give him back, I would have to answer:

Not even close.

Margolis & Bloom, LLP, practices estate, long-term care and special needs planning in Boston, Dedham, Framingham and Woburn with a strong commitment to client service.  If you have questions about these or other legal matters, do not hesitate to contact us by e-mail by clicking here or by calling us at 617.267.9700.

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