Five Year Anniversary of D (diagnosis) Day

It's been five years since I sat with Turbo in the neurologists office and got what I knew was coming: an autism diagnosis.


I remember the doctor looking at me expecting me to fall in the floor sobbing uncontrollably.  I didn't cry, I knew it was autism.  I was numb, though, as he rattled off the speech I am sure he had given to so many parents before me.  Two words snapped me out of my stupor: dog training.  He said we should seek out dog training (which is how referred to Applied Behavioral Analysis ABA), find a marriage counselor (because more then 80% of couples whose child is diagnosed with autism divorce), and we should consider residential for Turbo so we could have a "normal" life (really, I thought, he's only 26 months old).



The next months pass in a blur of learning special needs buzz words like: special diets, biomed, ABA, floor time, IFSP, FAPE, etc, etc, etc.  It was totally overwhelming and emotionally exhausting. We didn't go out and we had no one over.  I had no time to socialize my baby needed me.  He was depending on me to find therapists, an advocate, a school, specialists. There was no time to waste.  He needed early intervention and I had so much to learn.



Even now writing this the emotions are so raw.  I was such a mess a wild eyed "crazy lady."  I wasn't sleeping.  I was eight months pregnant with my daughter and would wake up with cold sweats in the middle of the night wondering what will happen to him if something happens to me.  No one will want him they'll just stick him in a home somewhere.  What am I going to do?  Will this new baby be autistic too?  How can we afford to pay for all of this?  I just lost it I couldn't breathe anymore.



Friends we had known for years started melting away.  I don't think they could handle the reality of it all.  It was hard to watch Turbo setting for hours banging his little head against the wall and screaming when I tried to hold him.  I had lost him.  The toddler who a few months earlier was laughing, babbling, and playing with his brothers was gone.  It was like he died and I didn't know how to process it.   He was right in front of me, yet he wasn't there at all.




We bought a house and moved shortly after Princess Flowers was born.  I had such high expectations for our new neighborhood.  Tons of kids on the block, most of them my boys' age.  We invited everyone on the block for Sabbath meals one family at a time.  We wanted them to know that we were excited to be there.  We gave them open invitations to our home because at that time Turbo could not go out to someone else's home.  He needed his own space, his toys, or he would lose it. A non profit in town actually bought and assembled a beautiful swing set in our backyard in hopes it would be a nice place the kids on the block could play.



No one ever came over.  When we called for Sabbath meals people were busy, they would get back to us, they never did.



One Friday night just after candelighting I heard a knock on my door.  Sabbath had just begun and I
had the boys in the living room dancing and singing Leha Dodi ( come my beloved ), a poem set to many melodies welcoming the Sabbath.  When I went to the door there stood my neighbor from across the street. She had not spoken to me in months.  I would see her everyone morning as I was leaving for carpool and would say, "good morning" to which I received no reply.  I was very surprised to see her there.


She got right down to business.  The alarm on their van was going off could he, as she points to Turbo, come and turn it off for us.  For those of you that are not Jewish or not observant she was asking for my son to break the Sabbath. She was asking  me to allow him to perform a forbidden activity because he was cognitively impaired -- so what difference did it make. She was, in affect, saying, "he doesn't matter."


I stood frozen for a moment.  I mean this is the daughter of a well respected rebbe at a local Jewish School, her freakin' husband is a rabbi/teacher/tutor for goodness sake.  She didn't understand why I was so upset. Turbo is not obligated to keep Shabbos -- he's handicapped.  So, stick to the letter of the law but you have no compassion for the fact you just flattened me emotionally.


I slammed the door in her face, pushed myself to continue singing with the boys, and cried myself to sleep that night.



Monday afternoon Turbo came home from school and started playing in the front yard running off
some energy after his long bus ride.  He had not spoke since his diagnosis, not a word, no hugs , no nothing.  I was setting on the front porch lost in my thoughts when I hear a familiar voice, a voice I hadn't heard in a long while, say "Hi! I said Hi!"


I look up to see Turbo standing at the edge of our front lawn waiving furiously at the horrible neighbor who had literally devastated my world just a couple days before. She stared back at him looking totally like a deer in headlights and forced a wave back to him. I laughed so hard I fell off my chair!!!!!!  Turbo ran over to me grabbed me around the neck and said, "love you!"

He was letting her and me know he was aware and paying attention and that he mattered!



Years gave gone by since that day.  Turbo is now in an awesome school.  He has amazing, caring therapists, teachers, and advocate.  He has an amazing little boy who has worked so hard and has overcome so much and has much left to overcome.  He defies specialists everyday who said he would never speak or use the bathroom on his own.

In your face.


He is loving and wants to be loved.  Slowly, day by day coming back to us.

To parents reading this who have just received a diagnosis.


There is hope!

Please remember this autism thing is a marathon not a sprint.  Don't beat yourself up for what you didn't know.  Surround yourself with good people.  Find a support group -- in person and not just one online.  A real honest to goodness face to face with people who understand and know what it is to have a special needs child.  People who will celebrate the victories with you and give you a hug and a tissue when you've had a crappy day. To all my fellow autism and special needs parents -- Chazak!  Chazak Ve'ematz!  Be strong! Be strong and have courage!