To my son...

My son is 18 years old today. That in itself will take some getting used to. I know I'm not the first, or the last, parent to experience the "coming of age" of a special needs child, but when I think about it, it's such a miracle not only that he's doing so well, but that he's even here.

I was completely stunned to learn I was pregnant. I had a 2 1/2 year old daughter and honestly wasn't ready for another baby yet, but one was on its way. In spite of the surprise, I was happy. I was 27 years old, married over 3 years. The timing wasn't bad.

Then it started. A mere week after holding the blue stick in my hand, I had a grand mal seizure. It stunned me completely. It had been 6 1/2 years!! I had taken care of myself! Why did this happen??!!

The paramedics got me to the hospital, and the first thing I remember hearing was, "We have to check to see if you're still pregnant."

I was, but it was only the beginning. About 3 weeks later, my mother left my father after nearly 28 years of marriage to be with his best friend. I knew nothing about her plan to do this until after it was done. Then came all the stress of being expected to "take sides," which skyrocketed my already severe stress and shot my health down completely. I lost 20 lbs. in a month because I couldn't eat. I had bronchial pneumonia so severe that I could hardly breathe for half my pregnancy. We were moving several hundred miles north, where I knew no one.

Amazingly, through all of that, I steadily began to gain back and basically broke even by the time I went into labor. We were all shocked that my breathtakingly beautiful son was a whopping 8 lbs, 3 oz!

A mere month or so after he was born, I began to notice some peculiar behaviors in Drew. He screamed, cried, and violently squirmed when I tried to hold him. He fed well, as long as he was in his infant seat. He never cried unless I held him.

As time went on, I noticed he never babbled. I was told by our pediatrician not to compare my son to his precocious sister, who was practically born talking! Still, something wasn't right. When he did finally start making sounds, they were odd and repetitive, not as if he were attempting to form words. Ultimately, we got a small smattering of words, but in the midst of countless ear infections, he lost them all.

I had to stop breastfeeding him due to my own problems, mostly notably plunging blood sugar, and I continued to notice growing distance and inability to "connect" with Drew. I would call his name, and he would run off toward our busy street, never acknowledging me. He lined everything up. He screeched constantly and would grab my wrist, throwing it toward whatever he wanted me to give him. We had his hearing tested, but there was no indication of a problem.

Most alarmingly, from about the age of four months, his head began to grow rapidly. I could almost see it daily. It assumed an eerily familiar shape--like mine--bulging in the forehead and in the back. My heart stopped. Did he have hydrocephalus, as I did? I watched him like a hawk for any other signs--lack of coordination, falling, regression of physical ability, but there was nothing unusual except that scary explosive head growth. Despite my constant and terrified pleas to his doctor, whom I had told about my medical history, I don't recall my son's head ever being measured.

We moved to RI from CT in the fall of 1996. I was eager to have a fresh set of eyes and ears look at my precious son and determine what, exactly, was going on. I hated myself for it, but I was starting to see him as a "demonic problem child" who always found trouble as I had the audacity to sneeze, use the bathroom, or take a shower. Someone even suggested that he go with me into the bathroom during all of my "personal moments."

Grocery trips were my worst nightmare. Drew would grab frozen food right out of the cart and start eating it. When I scolded him and threw the box of chicken fingers back into the cart, people stared, pointed, and even shouted at me that I was a rotten mother who refused to control my kid. Then an angel--a former special education teacher--tried to engage him as I attempted to compose myself. She asked me if I had ever had him evaluated for autism. Finally, something to go on!!

After we moved to RI, when Drew was 2 years old, I had no luck getting hold of a pediatrician and finally ranted to my grandmother, who was nearby. She suggested I call the RI Hospital Child Development Center and insist on an evaluation for Drew. That was September, 1996. We got in for January 17 and 20th--a Friday and Monday.

By then, I already knew, but we had to have a diagnosis on record. Once we got it, my fear gave way to terror. What could be done? How would I ever manage my health needs with his--and not leave my daughter's completely in the dust?

What I didn't know was that there was help. He started Early Intervention and preschool. I frantically ran the errands while he was in school, often sacrificing the nap I needed so badly. The kindness of some neighbors who got my daughter from the bus stop after school if I ran late saved my sanity and my life.

Of course, my own health situation became complicated with all the stress. I had six grand mal seizures in two years--a lot, since at that point, I'd had only about a dozen since infancy! The most terrifying one was when I came to on the bed to the terror of thinking Drew may have left the house and possibly gone into the nearby busy street!

After EI, he was--we were all--given the best possible gift: in-home therapy to teach him all the things I had been unable to. Of course, we would have to follow up when his therapists weren't working with him. They started with simple goals, such as self-dressing, feeding, and speech. In less than six months, he was talking!!!! They were short phrases (e.g. "Drew wants milk"), and he used third person for a long time, but over time, his language improved, as did his other behaviors, including his outrageous tantrums.

Three years after his autism was diagnosed, we finally convinced our pediatrician to get an MRI of Drew's head. He had "grown into it" by then and was 5 1/2, but I specifically asked to know about any abnormal ventricle size. No hydrocephalus, we learned, but he had Chiari Malformation. I was terrified, because I knew exactly what it was. Several opinions later, he still hasn't had surgery for it and seems to have only minor and intermittent symptoms.

I won't lie; we have struggled--a lot--and he still has significant expressive language issues. He's also socially behind but learning every day. He has one more year of high school, and we hope to have him enter the "Transitions Academy" next fall. He wants to drive--we'll see!--and is more independent every day. He's learning to manage money, he volunteers at the local library, and he's learning the public transportation schedule and routes.  I think he'll always need for us to watch over him, but he's always growing--literally; he's six feet tall!--learning, and changing. I have no idea what he'll ultimately be able to accomplish, but I support him all the way. He has taught me more than I can ever say--patience, unconditional love, and complete acceptance, among other things, and so unlike I was at his age, he is self-confident and self-loving. He is also very affectionate and hugs and kisses me every day. How many 18 year olds do that to their parents??!!

Andrew, I love you so very much! Thank you for being my son and showing me how to appreciate what is important in life.

Love always and forever,

Mom