When Elyse was a newborn in the hospital she was visited by a multitude of therapists and specialists, but since that time, she's barely had any therapy, and outside the regularly scheduled well-baby check-ups at our family doctor's office, she's only had a few follow-up appointments regarding: her surgery, her heart and her vision. Apparently hearing is next, but I have yet to hear from them - ha!
Before Elyse was born, from reading several books about Down syndrome originating in the states, I had imagined she would take part in numerous therapies, multiple times a week. This has not been the case. In fact, Elyse has only met with a therapist from the Infant-Parent Program through McMaster's Children's Hospital (Chedoke) who is trained as a 'general' therapist to assist us in making informed choices in regards to her therapeutic needs and overall well-being. Carol, our therapist, also comes with toys, ideas for play and good conversation. Her sessions are scheduled in blocks, and we are currently in the tail-end of our first eight week block.
We are on the waiting list to meet with an occupational therapist, a speech therapist, and a physiotherapist. We opted to wait to be put on the list until after the summer months, simply because we knew we would be busy, though from what I hear, I doubt the process would have been much quicker anyway.
Elyse is less than a week away from turning One Year Old.
I never fought to push the process along in terms of her therapy, because, in watching her grow healthily and happily at her own pace, I never felt she was at a loss. I have several friends who have children with Down syndrome who feel very strongly about having their little ones in therapy, and others whose child never attended a day of therapy in their life, and I respect both decisions. Dan and my primary goal for our children continues to be their happiness, and we try to make family decisions accordingly.
I approached my therapist about the topic of 'therapy' the other day during our home visit, after finishing another memoir, Sun Shine Down (Marchenko) that got me thinking.
Allow me to present two case studies: the author from the book and myself, to help illustrate a point:
The author's daughter is born with Down syndrome in the Ukraine and she is devastated. The doctors tell her if she had gotten tested, this mistake would never have happened. There are no persons with disabilities around her, because the population has been decimated before birth. She returns with her family to the United States, where she finds the doctors are no better in their attitudes. When she fails to receive the comfort and support she sought out she falls into alcoholism for a long stretch of time. Eventually she begins to come around. From the time her daughter with Down syndrome is nine weeks old, she begins receiving therapy four days a week; comprised of a different therapist for several hours each day. With intensive therapy, her daughter learns to sit on her own between the age of 16 and 18 months old. I should mention her daughter never had any medical complications commonly associated with Down syndrome. She never had surgery, or trouble eating, or any other physical issues that would hinder her development.
In stark contrast, my daughter is born with Down syndrome in Canada, and I feel relieved and grateful my daughter is alive and well and lived through her surgery. The doctors inform me about her medical condition, and encourage me with their smiles as I hold and bond with my baby during her extended hospital stay, following her intestinal surgery. With the love and support of my family and friends, and the attitudes surrounding me growing up, instead of despair I turn to activism, and get involved with my local Down syndrome association. Elyse comes home from the hospital, and we continue to bond over breastfeeding and become a complete family. We go to free play groups in the community, visit the library and the park, play with friends and meet up with others who have children with Down syndrome. We attend sign language classes for fun. The only therapy Elyse receives is in the past two months of her year of life, for one hour every two weeks. Without any therapy, Elyse learns to sit at 11 months old independently (with a safety net!). I want to emphasize that Elyse DID have medical complications, and spent the first four and a half weeks of her life in the hospital with me (and her dad) by her side.
Whereas I was able to bond instantly with Elyse, and always accepted her for who she was, the author struggled to view her baby as her own. Whereas Elyse and I built a strong emotional attachment to one another right away, the author took time - she gets there - but she had to work for it.
So, I presented my case to the therapist, and said, what do you think about all this early intervention they do in the states? What's the deal?
She believed the kind of intensive therapy described in the book would interfere with the infant-parent bond that should be the focus in the early stages of life. I asked why there is so much less therapy here, and she responded by emphasizing the approach the hospital takes is the most important thing in the early stages of a child's life is the development of a strong emotional attachment to their caregiver.
It doesn't take a therapist to tell you what a mother knows to be intuitively true: a mother and father's love is the most important thing you could ever give an infant. See the child first, and their disability second. Our love, and consequently attention, helped Elyse develop at her own pace, to the best of her ability. Maybe with therapy she could have sat a month or so earlier, but in the grand scheme of things - does that really matter?
I am not trying to completely throw therapy under the bus. By all means, if your child has significant delays, or set-backs or regressions...seek out help from a professional. I always told myself I would if I became worried about Elyse, and I have stuck to that: I am not worried.
I suspect Elyse will greatly benefit from more specific therapies as she grows and needs them, and I look forward to her assessments and hearing what the experts have to say...but there's time for that. I know she will continue to have a few extra doctor's appointments here and there...and there's time for that too. I know our family will continue to grow together, laugh together, and love each other fiercely...and on a daily basis, we always make time for that.
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