Learning your child has a disability
By ELIZABETH MacDONALD
Published: Monday, December 4, 2006
It was an emotional roller coaster that took us from grieving for a lost loved one to the elated joy when a successful intervention made progress.
How isolating life can be, when ‘finding out’, or ‘suddenly realizing’, or ‘coming to terms with the fact’ that your perfect little boy is - actually - not so perfect after all. It’s hard to bear, and even harder to share.
The term “admitting something’s wrong” comes to mind. Our son, John, was 18 months old when my husband, Mac, and I noticed that he had begun to ‘lose’ the few words ¨he had.
I was seven months pregnant with Daisy at the time. I didn’t know why John was like this or how to help him. He seemed to speak less and less, and he would spend hours by himself, spinning toys and watching wheels rotate close-up. He would always turn a toy vehicle upside down and spin the wheels.
We had limited knowledge at the time, but we felt that John did not have the classic attributes of “typical child with autism.” We were concerned; we could see that John was troubled as his level of frustration grew and he was angered by his state.
We were not educated about any spectrum, and did not have a clue where to go with our concerns.
My mother lives in Ireland. I spoke with her on the phone and she tried to console me with “don’t worry, he’ll come around. Just wait and see.”
Mac spoke to his mom. She lives 3,000 miles away. She said nothing.
My best friend told me that her father - who grew up to be a pilot for American Airlines - never spoke until he was four. Children do things at their own pace.
At Daisy’s one-month check-up, I asked my family doctor what I could do about John. He said, “wait.”
John turned two. He continued not to talk and his tantrums became increasingly more difficult to manage. We asked the doctor for a referral - not knowing that we didn’t need one to get help.
Following a “paper-work” meeting with our area agencies, John was finally ‘seen’ in late spring at RISE...for baby and family in Keene. We asked the evaluators about autism. Without confirming or denying, they helped us start an early intervention plan that combined child-led scheduled activities, occupational therapy and speech language therapy.
Though the initial progress was slow, we felt relieved knowing that we were finally doing something to help John, and our whole family.
It was an emotional roller coaster that took us from grieving for a lost loved-one to the elated joy when a successful intervention made progress.
In December of that year, John received the diagnosis: Pervasive Development Disorder otherwise non-specified, with Apraxia and Dyspraxia. This came following a visit to Dr. Carl Cooley at Crotched Mountain Rehabilitation Center in Greenfield.
By that time, we were truly on the path to recovery. We benefited from the Jumpstart Program led by Ann Donoghue Dillon from the Institute on Disability at the University of New Hampshire. Although there were still tantrums, we now had a plan. The team at RISE, the meetings with John’s caregivers at Great Beginnings Child Care in Swanzey and the Jumpstart team allowed us to make huge inroads into the regression that John experienced in his early years.
We also benefited from the Person Centered Planning, and Vision Planning delivered by Ann Donoghue Dillon. We began to understand John’s strengths, and continue to use that knowledge to help us with his challenges. Like many parents of children with specific challenges, we have become educated about the disability and look for ways to improve his chances for an independent life and plan for a future where he can reach his full potential. But most of all we enjoy John for who he is.
I look back now on how much we have learned. The coping strategies adopted for John help with Daisy as well. Although Neuro-typical, Daisy is like John in many ways. She has huge sensory needs and enjoys high impact activities. We promote self-regulation for the both of them.
We hone into every detail of John and his education. We meet regularly with his preschool teachers. They know how bright he is and share our conviction that John will realize his full potential by mainstreaming school with total inclusion by age eight or sooner. Ambitious? Maybe so.
John is currently transitioning from preschool to kindergarten. He already knows his new one-on-one aide and many of the children he will have as his classmates. One of the goals on his four-year-old IEP was to read a story to a friend. Now we want him to learn to tell time. This is a 1st/2nd grade level skill, and hard for him to learn. But for John the sense of control that comes from knowing time will help him prepare for transitions.
Like so many others, Mac and I continue to search for information to educate ourselves to better represent our children, and lead them to a full and happy life. I recently graduated from the New Hampshire Leadership Series, and completed orientation for the Autism Spectrum Disorder Certificate Program at Antioch New England Graduate School in Keene. This would not have been possible if not for John - and Autism - and I am grateful for the experience. I know that without him to inspire me I would not have achieved all that I have.
There are still moments when I wish I could turn back time…
We have a DVD with videos of John at nine months and then again at 12-months-old. With hindsight I can see the onset of regression in those three months. Looking back makes me feel inadequate for not recognizing “something’s-up with John.” I had left a full-time job to be a stay-at-home mom. John had left childcare and I was isolated.
If only he had stayed in child care, maybe we would have recognized it sooner…if only we had put him on a GFCF (Gluten Free Casein Free) diet sooner…if only we had questioned the MMR’s and opted for splitting the vaccinations, if only…my downward spiral to nowhere is interrupted by a small boy that announces “I love you Mummy”
And I love you too, John.