“Bye, Noah,” said Isaac. He smiled and stretched his arm up high in the air and waved, then zoomed into his room to put on a pair of pants.
“He wasn’t doing that five years ago,” Noah said. “He couldn’t talk.”
“Well, think back five years ago,” I told him.
“Yep, I was in second grade back then,” Noah replied.
“You needed a lot of help,” I said.
Suddenly the bus arrived, and Noah sprinted out the door, clutching his lunch and carrying his backpack. Isaac flung open the front door and yelled, “Bye, Noah.” He waved to Noah and everyone else on the bus. I was glad Isaac was wearing pants. The first time he opened the door -- only wearing underwear -- was the last time he ever did it. (Oh my stars, what an embarrassment.) Why? I told him he needed to wear pants if he wanted to stand by our front door and see his brother get on bus #2.
Today is the 11th anniversary of the date our twins were diagnosed with autism. Eleven years. I will never forget sitting around a little table at Castle Hill Preschool while we heard various reports from our team members. We looked at paperwork and assessments from many professionals: the social worker, speech-language pathologist, early childhood special education teacher, physical therapist, and the psychologist. They had been assessing our boys in our home for several weeks. They had become our friends – and still are. When I initially called the Area Education Agency (AEA) and voiced my concerns about Isaac, the psychologist visited within a week or two. I was relieved she didn’t tell me to “pray about it” like our pediatrician did.
We were told they both had autism. If that weren’t enough, their IQ testing indicated they both were diagnosed with mental retardation. Wow. I wanted to hear those words so we could get the ball rolling. With a diagnosis, we could help them get services and early intervention. I needed that validation. I wasn’t crazy – there was something different about my boys. These people saw it, too. Yet it still stung.
Isaac and Noah were almost two years old but had scattered skills. In some areas they were slightly delayed. In others, they were functioning like a six month old or younger.
I recall at the end of the meeting saying, “Thank you for all of your good work.” Then my voice got really high pitched as I continued. I got my point across, even with tears streaming down my face. I was grateful for their many hours in our home, their candid discussions, various assessments, and their listening ears.
Barbara, the school psychologist said, “Well, we’ve never been thanked before during one of these meetings. This isn’t the kind of news most families want to hear.” But to me, it was the beginning of helping my sons, and I knew the diagnosis was the first step in getting what they needed. Now we could move forward.
In the last eleven years, we’ve done intensive home intervention, special education preschool, elementary school, a special school, and junior high school. We have had paraeducators work 1:1 with our boys. We’ve had respite providers in our home and in the community. We’ve had appointments with speech-language pathologists, physical therapists, occupational therapists, and chiropractors. We’ve done feeding therapy, craniosacral therapy, and therapeutic horseback riding. We’ve done Spectrum Music, Spectrum Theatre, and swimming lessons just for kids on the autism spectrum.
For years we were gluten-free, egg-free, casein-free, corn-free, and soy-free. (Eat like a cave man. Chicken. Potato. Green beans. Strawberries.) We’ve used homeopathic remedies and have taken thousands of supplements. We were led to an amazing holistic medical doctor and his staff, who helped our boys in more ways than I can count – with anxiety, sleep, focus, transition, mood, digestion --all without drugs.
Eleven years later . . . what’s life like?
Noah was discharged from special education last year, so he’s sailing solo at the junior high in seventh grade. He has a 504 Plan and has been provided with a few accommodations. He’s earning fabulous grades and is involved in choir, men’s choir, band, and jazz band. He stayed after school Monday for Cooking Club, where he said he was the only boy, but that didn’t bother him. He helped prepare tacos and do the dishes. (Yet he doesn’t do dishes at home. What gives?) Yesterday we received an 8x10 picture of his jazz band in the mail, at their most recent contest. I put it in a frame, and he placed it front and center on the desk in his room. His transition to junior high was a little rough, but he loves school. I know his case is atypical. I'm very proud and thankful.
Isaac is doing well at his special school, which seems to be the best place for him to learn and to be comfortable. He is in a classroom with six students and two or three adults. He has a lot of autonomy and would love to teach the class. He is counting money, reading, working on spelling, and enjoying his vocational duties. On swim days, he has designated himself as the one to gather up his friends’ trunks, and he hangs them up to dry. (While this might be helpful, it’s also his way to control the situation.) His speech therapist called me yesterday to say he’s mastered his goal of creating sentences with his speech device, and she was wondering if we could up the ante a bit. Of course. He’s involved in Special Olympics and loves going with his school friends and teachers overnight to competitions. This morning he cleared off the table, put all of the dishes away, and as usual packed his own lunch and got himself ready. He does well with the morning routine and doesn’t need any prompts, except for the occasional, “Did you put on your deodorant?” He can do that independently now, which is nice because I was tired of looking at his armpits every morning. Often he will refuse washing his hands or eating his green beans. He is stubborn. He loves using the vending machine at the Rec Center and squeals in delight when an item is released. He knows how much money to put in the machine, and he does it all by himself, just like any other kid.
Do they still have autism? Yes, they do, but we have all changed a great deal.
During the last eleven years, my husband and I have spoken to various women’s groups, medical residents, teachers, other parents, high school students, and college students. We’ve been interviewed on TV and have appeared in the newspaper. Our goal has always been to educate people. Autism isn’t the end of the world; it’s just a very different one.
When we met our holistic doctor for the first time when our boys were three years old, he said, “Don’t ever give up on these guys. They will surprise you.” During that appointment, Isaac acted like a wild animal, and Noah was out in orbit. It was rare that Isaac slept through the night. Nobody was potty trained. Peace seemed a world away. I remember looking into his kind eyes and nodding. He was right.
I put today – March 26 – on the calendar every year, not so we can remember that emotional day so long ago when we got the official autism diagnoses. I put it on the calendar so we can remember how far we’ve come.