Hope and Expectations of a Mom

Ewan_1.jpgHope is something I will always have. Hope for a better day tomorrow. Hope for applying what I have learned today to tomorrow’s challenges. Being a mother of a child with childhood apraxia of speech (CAS) has ensured that I will always have hope.

My son Ewan is a beacon of hope. I won’t lie. It’s not easy to see his peers moving through developmental stages at a totally different pace than him. What is encouraging is that he makes progress each and every day. His progress has taught me to not rule anything out. It’s not been a matter of IF Ewan will learn something/how to do something, but WHEN. He has his own schedule that keeps advancing, just at a slower pace.

Ewan is a happy 12-year-old boy. While he doesn’t have the many close friends I had at his age, that’s okay. He is a different person than me. Perhaps he doesn’t need or want what I had. I try not to put my expectations on his life experiences. I try to guide my actions with my response to the question, “Is he happy?” If not, what can I do to help him achieve that happiness?

Ewan_2.jpgIn spite of his challenges with childhood apraxia of speech, such as communicating complex thoughts and participating in detailed conversations, he is such an inspiration. He continually puts himself out there. He wants to be involved with his peers and try new things. The key is exposure. Since he was a young child, my husband and I have sought out activities for him to try. Without a doubt, I do my research to ensure the softest landing possible at these activities. Meaning, he will feel supported while trying these new feats. We concentrate on one extra-curricular activity at a time. He attends private speech and language therapy once a week and feel that one activity at a time is best. So far, he has played soccer, hockey, ultimate Frisbee, baseball, tried ukulele, guitar, choir singing, hip hop dancing, swimming, mountain biking, BMX biking, golf, cross country skiing, snowshoeing, hunting, fishing, quad riding and snowmobiling. Some of those activities have proven to be favourites while others he tried and then didn’t want to sign up again which is A-Okay. I love how brave he is to try new things and how much effort he puts into each new activity.

School has been a struggle. We have tried segregated (special needs) classes and integrated (mainstream) classes. Neither seems to be the perfect fit, as a combo of the two would be the ideal but is not offered. That doesn’t mean we lose hope! Working part time from a home office has allowed me to home school him one day a week. This year, for his home school day, he attends a Forest School which has been amazing for our child who loves being outside. All year long, even in winter’s coldest days, Ewan and 11 other students are outside in the forest all day learning math, language and survival skills in the woods. Grade 6 has been his best year yet. I have high hopes for grade 7 to be even better with what we have learned.

Meaningful integration and inclusion is vital. Ewan was fortunate to benefit from the services of Children’s Inclusion Support Services (CISS) from Andrew Fleck Children’s Services when he attended licensed child care centres here in Ottawa. Right from the start, we sought out support so he could be included and we feel that has helped him build the confidence he has today for trying new things.

I want other parents to know there is always hope. Hope for tomorrow. Don’t apply expectations from your experiences on your child’s life. It’s not realistic or fair to the journey you are on with your child now. Be open to new experiences and seek out new learning opportunities for both of you. Take challenges on one at a time. Each experience will teach you something to lead you to future success. Let your child lead when they can. Sit back, watch and learn. Like me, you will likely be surprised at what you can learn from your child when they are flying ahead of you.

By Robin McMillan

Robin and her husband Derl are the proud parents of Ewan McMillan age 12. They started a parent support group called Ottawa Parents of Children with Apraxia (OPCA) in 2008 after learning about Ewan’s diagnosis. Robin also facilitates/moderates three Facebook groups- one for OPCA, Apraxia Kids Canada and Apraxia Kids Canada Advocates. In July 2010, Robin accepted the Consumer Advocate of the Year Award from the Childhood Apraxia of Speech Association (CASANA- Apraxia Kids) and has presented at their national conference.