I listen and then I execute. I do think that having a better understanding of why a treatment plan is being recommended helps to increase compliance. Education is huge. As a physiotherapist, education is a big part of my practice because I do notice that it increases that chances of a client complying with my recommendations. This is why I ask Oscar’s team a lot of questions, I want to learn and I need to understand “why”. I have never felt ashamed to ask questions.
Since receiving the “Good News” I have been thinking about why?? Why didn’t the neurologist and geneticist predict that this could be a possibility for Oscar? I don’t know why and I don’t think that they know why either. Oscar still has a lot of challenges, but he is currently far better off than what was expected of him. I don’t think that what we are doing with Oscar is so exceptional, but I do think we have done something right over the last little while and I want to break it down. Maybe it could be helpful to someone?
I used to look ahead to Oscar’s future a lot more frequently than I do now. I don’t know what changed? Is it is because I keep myself busy and don’t allow myself the time to think or maybe I have evolved and have become this person who lives in the present? Either way, I just focus on what I have to do, what exercises I need to accomplish during structured therapy and how I can maximize his exposure during any given experience. I keep it simple, it is easier for me to stay focused that way. For example, when Oscar is eating I make sure that he has an appropriate food item to practice self feeding and that his meal has good nutrition (which he may need help with). He has 2 water containers on his highchair; the Dr. Brown’s sippy cup for independent drinking and the honey-bear sippy cup for assisted straw drinking. He is offered these things at every meal providing him with a lot of opportunities for practice.
We do therapy. EVERYDAY. EVERYDAY without exception. I do what I am told to do. I think about therapy and his exposure to different stimulation constantly. For example, when we are at the beach, Oscar is “walking” the beach, he is playing in the sand, I am putting him in the water, I am pointing and labelling whatever I see or hear, he is wearing his hearing aids as long as he isn’t in the water. At the zoo, I could keep Oscar in the stroller the whole time…that would be easier, but he can’t see as well, and he already sat for awhile in the car. I do do structured therapy everyday at home, but I also make sure that he is experiencing the world around him as much as possible. This is what we have been doing for the last 17months.
Unfortunately, I can’t change Oscar’s diagnosis. All I can do is my best to provide him with every opportunity to become the best version of himself. I take this job very seriously. I know that life is busy and complicated and it is easy to become overwhelmed. I have been there!! There was a period of time when more and more things kept getting added to Oscar’s treatment plan. It just kept piling on and there wasn’t enough time in the day for me to accomplish everything that everyone wanted me to do. Me saying “I can’t” and giving up wasn’t an option so I asked each therapist to give me there top 3 exercises. I knew I could do that and it helped me focus on what was important.
Your child’s treatment plan obviously needs to work for your child, but also for you and your family. Raising a special needs child is a marathon not a sprint. I don’t want to portray myself as an expert, I am not. I am a mom raising a child with special needs and a typical child. I think that I am becoming an expert in Oscar and what I have been doing seems to be working for him. I want to continue to share what I am doing in the hopes that maybe I can help someone else.
A Real Mom Story on Raising a "Special" Family 