One mother’s story – giving hope to each other

The year – 1997. Imagine, the excitement of finally having your first born child in your arms after 9 very frustrating and stressful years of infertility issues (high dose medications, IVF, miscarriages). I knew his name years before he was born – Ryan meaning ‘little prince’. Ryan was a beautiful 8lb.6 oz. little boy with the most infectious smile. Most things appeared pretty normal to us ‘at the time’ over the first 2 years. We lived in the Middle East, where he was born, for the first 6 years of his life. His Pediatrician was concerned over his head circumference, which was well over the 100% percentile in his first year. He had an ultrasound at 3 months and a CT scan at 6 months; both were normal. As he grew 5 cm in length, his head grew 5 cm in circumference (large head circumference in toddlers with autism has been documented). Poor little guy, when he started to walk at 1 year, he fell often as any young toddler, but his head always hit the ground first. He always had bruises on his forehead until he managed to get his arms in time.

Changes in Ryan came slowly after the age of 2, at least that is what my husband and I recall. He had lost the words he knew such as plane, car. Over the next year, we worked with a SLP but little progress was made in his speech development. Ryan did make words, though they were limited. Ryan began to sit by himself for long periods quite comfortable in his own space; play repeatedly with his toy cars at eye level on a table turning the wheels repeatedly and becoming very distressed if the wheels got stuck; he occasionally rocked back and forth; began refusing hugs and kisses; never responded when his name was called; could no longer make eye contact with us; didn’t blink when he watched TV almost in a comatose state; temper tantrums became wild and frequent; and he became a runner with no street sense or fear of danger. Ryan would refuse almost all foods except cheerios, bread, yogurt, cheese, milk and pasta. He didn’t socialize or seek out other children to play with. It was like nothing existed for him. He was happy in his own world, but we were sad he wasn’t in ours. It was heartbreaking not to hug and cuddle my son, not to hear ‘mommy’ or ‘I love you’.

At 3 ½ years old, we had Ryan tested by a Psychologist, SLP and Developmental Pediatrician in Toronto during a summer trip to Ontario. Ryan was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).

What next?  First we cried, I cried a lot, not understanding how this happened, not understanding what this meant for Ryan and how it would impact our lives forever. I was angry, we tried so hard to have a child, a healthy child, how could this happen. There was no denial though, we knew we had to continue and we would do what we had to, to help Ryan come out of his world and into ours.  I decided to leave the work force. I had worked full time for 16 years as a RN in various hospitals.

The Psychologist advised me to go to Parentbooks, a store in Toronto and buy some books and start reading. Days later we flew back to the Middle East and started a new chapter in our lives. Our life long journey had begun seeking knowledge and acquiring increased patience. It was not good or bad, it was just different. The first book I read was ‘Unraveling the Mystery- A Mother’s Story’ by Karyn Seroussi (published in 2000, the year Ryan was diagnosed). I read all night, highlighting passages and making notes. This book changed our lives. Ryan was like she described the “the incredible exploding baby”. That day I started Ryan on a gluten free/casein free diet (he tested for leaky gut syndrome). He finally had a formed stool after being on the GF/CF diet. I followed many of the interventions Ms. Seroussi did with her child. A few months later, I set up an ABA/IBI program in my home (I attended a course on this at the Geneva Centre). I hired a Sudanese teacher living in our area who had some experience with children with disabilities to help me. Our main goal at first was to make eye contact, to have Ryan become more comfortable with quick eye glances, to help him understand simple commands. He screamed in pain to look at us even so briefly. Those were difficult years. Ryan said ‘mommy’ for the first time shortly before his 4th birthday and his temper tantrums became less frequent over time, which I personally credit to his diet. While overseas we had little support. Friends didn’t understand.

Over the years Ryan has done IBI (with me at home); sent urine, stool, blood and hair samples to labs; tried high dose B12; nystatin challenge for his bowel yeast overgrowth along with probiotics; ion foot baths; sacral cranial massage; a variety of naturopathic treatments; PACE (processing and cognitive enhancement) and we continue to use ABA strategies in everyday life.

We moved back to Canada in 2003 as recommended by a Canadian teacher Ryan had in KG overseas. She felt strongly that we return before Ryan started full time school (grade 1). We haven’t looked back. The years have been frustrating and challenging and successful.

Ryan is now 16 years old, in grade 11; he manages well in school with EA support in the applied stream. He is very verbal though he scores very low in verbal reasoning in testing. He attended beavers, cubs and one year of scouts with a support worker, attended day camp and three 1-week overnight camps with the help of Reach for the Rainbow. This will be his 5th year at Camp Kodiak attending the 3-week camp on his own. He has his Bronze Star in swimming, loves Cooking Club in highschool and has been on the Reach for the Top team for several years. He bowls weekly in a regular league, takes drum lessons and is presently doing a co-op work placement with EA support in highschool and loving it. He attends church every week with me or on his own and makes sure everyone gets a loving hug to last them the week, it is his second home. He has few friends but is a happy teen and content. His once obsession with Thomas the train, transformers and Yu-gi-oh cards is now reading about alternate history and parallel universes. For a child I thought would never read, he is a prolific reader. Ryan is loving and affectionate and I have a never-ending supply of “I love you” and hugs. How things have changed over the years.

What are his dreams?  He says he wants a girlfriend, a job, eventually get married and have a family. Our (parents and sister) wish for him is that his dreams do come true. Our journey is long and challenging, but so rewarding.

Since returning to Ontario in 2003, I became involved with our local Autism Ontario Chapter. After having little support for the first 6 years of Ryan’s life, this was a welcome group, meeting others that understand the challenges of raising a child with ASD. I quickly joined the CLC (Chapter Leadership Council) and took an active role in opening the door for others in our community experiencing the same challenges and at the same time making new friends. The vision of “acceptance and opportunities for all individuals with ASD” and the mission “to ensure that each individual with ASD is provided the means to achieve quality of life as a respected member of society” spoke to me. This is my wish for Ryan.

Autism Ontario is our advocate in the community and plays a very active role as a participant in government related business re ASD which in turn supports our children with ASD and families. Funding for the March Break and Summer Camp are a direct result of this advocacy and ongoing communication. I have been privileged to sit on the Board of Directors for the past 3 years, appreciate seeing the larger picture and making a contribution to the organization at the provincial level. We are Autism Ontario together, the Chapters and Provincial Office. We can not work in isolation. I look forward to continuing my involvement with my local CLC, helping our children meet the demands of everyday life, growing with opportunities, opening doors to new possibilities, planning and participating in activities in our community and creating friendships as we travel the same but varied road together.

Every situation, every circumstance, every family, is different….single parent, two parent families, financially stable, low-income earners, on government support, supportive relatives and friends, others with little support. As our children with ASD are unique …non-verbal or aggressive, low or high functioning, high IQ and more in control. We all feel alone and depressed at some point in this journey.

My son will find his place in the world assisted by those around him that love him and care for his well being. I will continue to help him find his way whatever road he chooses; stay actively involved with Autism Ontario; advocate for those with ASD; continue public speaking; and making our community more aware of ASD and its challenges and successes.

We all have a story to share….. Giving hope to each other is important.

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