Brooklyn Special Needs Parent Network  
   the website for Parents of children with Asperger's Syndrome (ASD Level1)    and related Neurobiological Learning Disorders

 ONCE UPON A TIME....   A Mother's Story

 

       CHAPTER 1     

 

There I was, breathless as the doctor gave us the news. "Your amniocentesis results are in. They are all negative - your baby's fine". My heart began beating again, as a wave of relief came over me. Not only was I over 35, but a Special Ed teacher who was no stranger to working with children with assorted syndromes and viruses. Now all the plans and dreams of a new mother would be spun.

     Five months later, after a l-o-n-g and difficult delivery (so much for the total Lamaze experience), our miraculous little tummy tumbler was here! Little did we know that cuddling, bonding, nursing and cooing would be replaced by colic, reflux, refused feedings, medication, sensory integration dysfunction, torticollis, therapy and sleepless nights. Our plans and dreams were turned upside down! (sounding familiar yet?) I was soon to find out, when you learn that this perfect little cherub you've held in your heart since conception [if not before] has special needs, you enter an emotional rollercoaster similar to the "stages of death". Those stages being: denial, bargaining, guilt, anger depression and acceptance. For any two parents, the stages experienced and the degree to which they are experienced varies. But, the stages of death were no stranger to me. The year before Christopher was born, I was faced with saying goodbye to my mother, as she lost her courageous battle with cancer. We buried her in her "mother of the bride" gown, just four days before what was supposed to be the day I would walk down the Church aisle, in the her wedding gown, standing where she had forty one years earlier .  

       It was hard enough having a new baby and no mom to "show me how it works". (wouldn't it be great if babies came with users manuals!) Now faced with caring for a special needs child and no family members nearby, I was feeling isolated. I felt like God had given me more than I could handle.(a topic I still struggle with when in counsel with our parish priest). Then one day a letter arrived in the mail. There was no return address on it and the postmark was smudged. It was hand written on a feminine, delicately designed stationary. I began to read. I didn't recognize the writing, but the author was talking to me about exactly what I was going through and how I was feeling. I broke out in a cold sweat and began to tremble. It was a celestial letter of consolation and encouragement from my mother! My first thought was "Is this someone's idea of a sick joke?" or "does someone not realize that she's dead and not just living on another part of the planet!" I was determined to solve this very unsettling mystery.

       That night I told my husband about the letter and how "freaked out" I was by it. "You weren't supposed to be "freaked out" by it", he said.

"I beg your pardon?" I replied. Now I was really confused. He confessed. Knowing our situation and what I must have been going through without my mother around, he wrote a letter to me, in the person of my mother. Writing those things he thought she would say if she could visit me from heaven.

                                                                                             

  CHAPTER 2

 

He eventually attended regular day care and preschool (with related services and SEIT), but our "cartoon character" learned and interacted differently. Then in second grade, as he was aging out of Montessori, we got the diagnosis that would change things forever. He had Asperger's Syndrome. "Okay" I thought, "I can handle this. It's not Autism". But the reality didn't hit until we saw it in writing at his IEP meeting- AUTISM. I felt his father's heart sink. I had to admit to myself, what I had already known. Asperger's was just defining where on the Autistic Spectrum he fell. 

      Where did he fit in terms of schooling? We had been struggling with this as an unanswered question since kindergarten. A social child who needs the benefits of inclusion, but a small class due to sensory issues not academics, yet needs a nurturing environment sensitive to and knowledgeable about his learning and social language differences. He had been bounced around by the public schools. Inclusion kindergarten was too big and noisy and he wasn't the "cookie cutter" they wanted. I took him out after 2 1/2 months and educated him at home for another 2 months, while I visited all the wrong placements they recommended. Finally the district, having no clue about sensory integration, mislabeled him ED (Emotionally Disturbed) and placed him in a class for children with emotional handicaps. This was the class we used to call SIE 7. Having taught SIE 7, the school and I knew this was not right for him. He was not a "Dist. 75" kid. It was already January and not wanting to bounce him again, his angel of a teacher assured us she would make it "gel" for him until June. We hired a lawyer and got him into a special Montessori program for the next two years. What a difference! Not only was he academically on track and making friends, our budding artist was now painting pictures of people not just birds. 

Now, in 2nd grade, getting a definitive diagnosis and aging out of his program brought us back to where we started. PROGRAMS THAT DON'T EXIST! Where do we go from here? Turned down by private learning disabilities programs due to his sensory issues [having a classification on his IEP of "Autism" didn't help], he was accepted into a pilot ASD "NEST" program in the school system. Two years later, school testing showed two grade levels lower compared to his grade level [and higher] scores on outside Neuropsychological testing. 

    Armed with a wonderful learning disabilities tutor [and an unaffordable lawyer], we placed him in a local college prep academy that integrated students with learning disabilities in their regular curriculum. He was now getting A's & B's in 5th grade, joined the choral group, received certificates and was accepted. Sounds like a keeper? No. He was offered a seat at a specialized program in the city, where he was on a waiting list. With the academy facing financial controversy and being promised everything he needed by the other school, we decided to make the switch. It was the worst decision we could have ever made!  There is a piece of me that will always feel guilty for the damage done, although I know we had no way of knowing how the school would treat and abuse him and us.

 

     PLEASE STAY TUNED & CHECK BACK SOON, AS 

     CHAPTERS 3 & 4 ARE BEING PREPARED FOR PRINT.