You know, one of my favorite parts about doing this blogging thing is all the amazing people I get to "meet".
I try and peek at people who comment on my blog...and I ALWAYS read their blogs when I find that they have one. This is how I found Tara. Her blog "Madness Ensues" is brilliant combination of life and the twists and turns life takes...Her son, referred to as "The Boy" (and described as being "chock full of chromosomes and surfs the spectrum"), is as delightful as his mama! I hope you'll check them out!!
Tara has agreed to a 2 Part Guest Spot. I am thrilled to have her, as I am always hunting people who are 10 steps ahead of me on this crazy path of life!!
"How Did I Know?
I didn’t. Alex was born with Down syndrome in 1995, and that was a pretty big diagnosis as far as I was concerned. My first child (my only child); I had no experience as a parent, no experience with a person with special needs, no frame of reference.
Alex hit his developmental milestones about when I expected -- a little late but not alarmingly so, except for his speech which was significantly delayed. He had a bunch of gastrointestinal issues that were addressed surgically in his first three years. He had a seizure disorder that kept me on my toes. My point is that I was a little busy. I was learning about this little person, about Down syndrome, about parenting, moving from California to Colorado and back to California, and I can’t honestly say if I had any inkling along the way of what was to come.
By the time Alex was three we hit our stride. The feeding tube was long gone. We had the PT, OT and S/L schedules down. We had moved into the school district and had our first IEP behind us. He was a quirky little kid. He had some sensory issues; he would only eat certain foods; he didn’t like to be touched unless he initiated the touch, he was particular about the clothing he would wear (and when) and shoes were the bane of my existence. He was a busy toddler, swinging and swimming were his favorite past times. He loved riding and taking care of the horses. He liked things orderly and was a champion with a duster around the house. He had a stubborn streak, but could usually be re-routed.
We missed the ‘terrible twos’ and went right into what I remember, not so fondly as the ‘tempestuous threes’, the ‘fearsome fours’ and the ‘frightening fives’. He gained quite a temper and became very aggressive to others and exhibited some self injurious behaviors like banging his head and picking at his fingers and cuticles until they bled. His stubborn streak was well defined. It was suggested to us by three separate daycare centers that we find a more suitable placement for Alex. We worked with behaviorists, therapists and doctors. Alex didn’t like loud noises, and was very meticulous about the way he played with toys. He would spend hours lining up all his cars or dinosaurs. There was a ‘right’ way to do this that was only apparent to him and a tantrum resulted if the ‘right’ way was interrupted. I was told this was all part of the Down syndrome package, atypical, but not unheard of. From everything I read, and I read everything I could get my hands on, this didn’t feel like the atypical Down syndrome behaviors. I kept pushing.
We went to specialist after specialist. Alex was diagnosed with Oppositional Defiance Disorder, Attention Deficit Disorder and Obsessive Compulsive Disorder over the next couple of years. Each of these diagnoses held some ring of truth, but never really felt right to me. For this reason I chose not to put Alex on any of the medications used to treat those particular disorders. We continued to work with the behaviorist, and once Alex hit four he started really talking and that seemed to help with some of the behavioral issues we were experiencing. But he was still very aggressive, having multiple tantrums daily and not sleeping through the night. His education suffered because so much time was spent on behavior that academics were almost secondary. Our life was very limited since we were dependent on where his mood fell at any given moment.
We eventually found our way to the Developmental Disabilities Clinic at UCLA - - Alex was 7 years old. They ran test after test after test, taking extensive background from me, his teachers, his therapists, etc. At the end of this process, I gathered in a room with the team who performed the screening (a physician, several therapists, a social worker, a teacher, and a psychologist). They told me of their findings and asked me if I was familiar with Autism. I knew the word, of course. There were children in Alex’s classes who we diagnosed with Autism, but I didn’t really know what it meant. I remember thinking, “Here we go again, another diagnosis”. I went home and read and read and read. I poured over the test results and compared and analyzed (It’s my coping mechanism; it’s what I do when I don’t know what to do). There he was, on the pages of books laid out before me. My son had Autism; there was no doubt in my mind. It fit. He fit. I think I’m one of the few people who cried tears of joy when hearing the word Autism. His official diagnosis is Down Syndrome-Autistic Spectrum Disorder (DS-ASD)."