Friday, July 23, 2010

Charting the Course

We got our first directions from Dr. Paul McDonnell, a psychologist in a neighbouring city. He was the former head of the psychology department at our provincial university and had a special interest in autism. He now worked part time at the university and ran a private practice out of his house. Basically, if a parent suspected their child was autistic, he was the 'go to guy' for diagnosis. My husband had been a big man on campus and knew Dr. McDonnell from his days as a student there. He made a phone call and we got in to see him quickly. It was a relief -- until we got the report.

I spent a lot of time looking at the pinpoints on the graph, the summaries and explanations of the different areas of testing and the list of recommended books. Dr. McDonnell had told us to read the books, figure out how to "do" ABA, write some programs and hire some university students to do them. He explained -- gently and with empathy -- our son needed to learn at twice the rate of his typical peers if we wanted to catch him up to their level. We had a blissful ignorance about how much he lagged 27 months of age (the time of the report) he was near the norm for his gross motor skills but his other areas -- language, social skills, thinking & reasoning, fine motor and daily living were all around the 14 month mark or below. It really didn't seem like much: really, it's only 13 months... how hard could it be? I did not realize how much a child learns in their second year of life. There are huge differences between a 12 month old baby and a two year old toddler. I did not have an accurate frame of reference. We had had our second child when our son was 18 months old. She was still less than a year old so her abilities were below our son's development. Our children didn't go to daycare or play groups. I wasn't involved in any mommy groups. My only nephew was six months older than our son and lived three hours away. Only one of our friends had children, a girl a few years older and a boy our son's age. We didn't visit often. Long car rides resulted in long bouts of screaming. I had not had the opportunity to see how wide the chasm really was. Then I started reading those books.

Social skills are best practised in group settings with typical peers the expert advised. I had reservations about trying daycare again. Before his sister was born we had thought a part time play group would be good for him -- and even better for me. He required constant attention and I wanted some solitary time to bond with our new baby without chasing him around. He wasn't sleeping through the night and barely napped during the day so I hoped that mornings at a playgroup would give me time to sleep and enjoy our new baby. Few facilities took young toddlers so we hadn't been able to find a place before our daughter was born. Shortly after her birth, I happened to drive by a church that advertised openings at their daycare for children as young as 18 months. Our son was just past this age so we hastily arranged a visit. We instantly liked the director, Tara Diamond. She was a big woman with an even bigger heart. We were introduced to our son's daycare teacher, still in her teens but certainly well experienced with two year olds. She asked some rapid fire questions: Was he toilet trained? Nope, not even a little bit. What did he like to eat? Nothing besides shredded marble cheese. Did he talk? Nope, not at all but he did like to scream. Did he use a cup? Nope, just a baby bottle. Did he nap? Not very often and not very long. She gave me a sidelong glance and said no more. I didn't want to know what she was thinking. When I filled out their questionnaire I was asked what were the things my son enjoyed. I wrote Teletubbies, Blue's Clues, cheese and fans (especially if they were spinning). Under things he didn't like I wrote getting his hands dirty, food, sitting, sleeping, loud noises, being touched. There were more but there wasn't room to write them all in. We disclosed his delays to the director but stopped short of telling her we thought he was autistic (we hadn't been able to get our doctor to even discuss the possibility at this point so why raise that flag?). She reiterated what our doctor had said: he was a boy and the first born. He had been several weeks premature so initial delays were expected. He hadn't had time to socialize with other children and I probably babied him. She suggested we leave him for an hour so we could see how he coped. We hid in the parking lot for 15 minutes, then peeked into the backyard to see his class playing. While other children ran around climbing the play structures and going down the slide our son stood stock still, staring at the line of car bumpers he could see just past the chain link fence. Occasionally he would pick up a handful of pea gravel and pitch it over the fence, then quickly wipe the dust on his shorts. Not once did he look at the other children or try to play with them. When it was time to go back inside the teacher called his name but he didn't respond. She walked over to him and put her hand on his back to guide him to line up with the other children. He immediately ran to the other end of the playground and caught sight of me. He started screaming. I started crying.

I took him home and placed an ad for a 'mother's helper' in the local newspaper. In the end we hired the younger sister of my hairdresser. She came every weekday afternoon. She pushed him around the house in the laundry basket. He would laugh hysterically. He ran around the backyard, throwing rocks and toys over the fence for her to retrieve. She learned how to make his special mixture to drink when he was hungry. She learned how to interpret his grunts and screams so as to make his days more enjoyable. She stayed for two months until school beckoned. She was our son's only playmate but he didn't seem to notice when she was gone.

So here we were again looking at daycares. I procrastinated. I visited a few and when I saw the two year old class, with their craft projects and circle time I knew our son was far from ready to join. He couldn't use a spoon, let alone a crayon. He couldn't stay still unless strapped into a high chair. How could he sit 'criss cross applesauce' amongst 10 other squirmy kids, reciting the days of the week and talking about Valentine's Day? There was a new daycare being built down the street. It wouldn't be ready for six months. "Perfect," I thought, "lots of time to get him ready."

One of the books I read explained that the first skills that needed to be taught were attention and imitation. I found some sample programs in another book with examples of what specific actions to teach. I searched the internet for video on how to actually 'do' therapy. I ordered a kid-sized table from the Sears catalogue.

Our first session went like this: I sat on the floor and positioned our son sitting on the floor facing me. I asked him to touch his head by saying "do this" and placing my hand on my head. He stuck his fingers in his mouth and started sucking, then looked out the window, giggled and ran away. I wasn't even sure he had seen what I did or heard what I said.

I looked in the books to figure out how to get him to pay attention and found a program where you say "look at me" and the child learns to look at you. Seemed simple enough...until I tried it. He wouldn't look, even when I took his face in my hands and turned it toward me; he still averted his eyes. In desperation I snatched the baby's rattle off the floor and shook it. He immediately looked at it. Quickly I raised it to my eye level and he made a furtive glance at my eyes. I exploded with praise: "Good looking at Mommy honey!" He snatched the rattle from me and turned it over in his hands, ignoring my words. I took the rattle back and said "look at me" and then shook the rattle beside my head. Again he looked up, first at the rattle and then in my eyes. I gave him back the rattle while exclaiming how happy I was that he looked at me. As he examined the rattle, he stayed sitting on the floor. My joy abated when his interest waned. He threw it, jumped up and scampered away again. I scavenged the house for other noise making toys and piled them beside me on the floor. I would pick one up and show it to him. If he reached for it I would pull it away and up to my eye level and command "look at me!" in an emphatic voice. When he made eye contact I gave him the toy and told him what a good job he was doing. When that toy stopped working, I picked a new one. We did this routine for half an hour and then the baby woke up crying and hungry. Therapy abruptly ended for the day.

As I sat there nursing the baby, I watched my son entertain himself by throwing the empty blue water cooler bottles around my kitchen. I thought about all the things I needed to teach him and how the baby's nap time was just not long enough to get the job done. He needed to learn to copy gross motor actions, fine motor actions, actions with objects, oral motor actions, and verbal utterances. These were just the first tier of programs in imitation skills. There were at least ten more before we could even move on to higher level skills. I realized we needed to hire people. We needed a team to spell me when the duties of motherhood called. There weren't any clinics or caregivers who specialized in autism in our city -- or even our province. We didn't know of any other families attempting this treatment. There was no master list of trained ABA personnel. Our province was indeed a barren land. I asked myself this question: "Where do you find deck hands in the middle of a desert?" Suddenly, I was very tired.


  1. Charlotte! I'm exhausted all ready!

  2. You are not alone. You're story is exactly like my family's (and so many others). We are going through the process now of deciding on therapy and where it will occur and what we will do with our 2nd child while where are working with our older (autistic) child.

    I sure wish Holland had "visitors center". :)

    By the way, have you focused on diet? Our first steps were switching our son's diet to Gluten Free and Casein free. He made IMMEDIATE advances in eye contact, language, and motor skills. I couldn't believe what I was watching happen.

    If you have the time you should investigate diet. And if you're successful as GFCF, you should also consider taking a step further into the SCD diet. Take a peek at for more.

    Good luck. God Bless. We are are right here with you.

    Tom, Sally, Enzo and Gino.

  3. Your just like me. There's never enough time. When I should be relaxing, I'm thinking about everything I need to do with my son. Everything I still need to teach him.

  4. Tom and Tammy: Thank you so much for your supportive comments. This blog is not time accurate. We started therapy in 2002 and stopped in 2007. Our kids are all neurologically typical now. It will take some time for me to post all the entries that bring our family up to current date on this blog. I am glad that you can relate to what we have gone through. Even though my kids are no longer on the spectrum I have an affinity with other parents who are struggling to do right by their children and help them become all that they can be. May God bless and strenthen you both on the road that lies ahead.