Entry Thirty Nine- Start Where You Are

“Start where you are. Use what you have. Do what you can.” – Arthur Ashe

Nobody starts off in the same place. And nobody finishes at the same destination.

My son has a genetic deletion meaning that he is missing genetic information. He didn’t get to start his little life at the same place as my neuro-typical daughter. He started behind. We were fortunate to learn of my son’s diagnosis when he was only 4 months old because it allowed us access to the early intervention program at a young age.

The spectrum of potential abilities possible amongst children with my son’s genetic diagnosis is amazing. To me, the logical explanation for this spectrum would be the varied amount of missing genetic material. Doesn’t is seem logical that children with a greater amount of missing material would be more affected? One article (1 of 2 articles that the genetic doctor provided us) stated that the size of the genetic deletion (the amount of missing material) doesn’t necessarily correlate with the child’s abilities.

WHY????? Is what I want to know. If your child’s prognosis can’t be predicted by the amount of missing genetic material then what is the predictor? What is making the difference? That is what I want to know… because that is how I can help my son.

My son started physiotherapy and occupational therapy at about 9 weeks old. He received his hearing aids at 4 months old and started speech therapy shortly after. He had access to a dietician and a naturopath around 4-6months old as well. We also took advantage of bi-weekly private sessions with a deaf and hard of hearing teacher starting at 5months old…My point is that we started where we were, we are using what we have, and we are doing what we can.

To say that we were overwhelmed with the number of services made available to us is an understatement. But I couldn’t say “no”. How could I say “no”? I needed to “use what we have”, to take advantage of any opportunity made available to my son.

I am aware that not everyone has the luxury of doing this. In Canada we receive a paid maternity leave for up to 18months. I took advantage of that opportunity. I know that there are many mothers/parents who return to full-time work after only 12weeks of leave. This would make it extremely challenging if not impossible to take advantage of all possible opportunities. Do what you can.

There are so many factors that may limit your ability to say “yes” to all available opportunities for your child. If you are a single mother. If you have more than one child. If you have a limited support network. If you live far away from extended family. There may be financial limitations as well. All of those things can really alter your ability to take advantage of opportunities.

“Use what you have. Do what you can.”

In many ways I feel very fortunate. I have the luxury of time. I have the luxury of an amazing support network. I have the luxury of living close to one of the world’s leading pediatric hospitals. I have the luxury of a provincial healthcare plan that covers the majority of our medical expenses, therapies and other expenses associated with my son.

I think that is why I have felt compelled to share. I want to share therapy ideas. I want to share products and toys that are helping my son. I want to share my mental health journey and conversations that I have with my social worker because maybe they will help you too.

I am definitely NOT an expert at raising a child with special needs. I am new to this, maybe like most of you? I have NO idea what I am doing or if I am doing the right thing. I am simply collecting information from all of these experts around me, using my critical thinking skills and applying those things to my son. I am sharing because I hope to help someone who may not have the same access to services as we have.

“Start where you are. Use what you have. Do what you can.” – Arthur Ashe

Photo Taken: January 2021

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