On any given day I am like most moms. I help with homework, do laundry, and tuck my sweet boys into their beds. To look at my family, you’d think we are just like everyone else. Two kids, two cars, a decent house, clean clothes, etc. The difference is what you DON’T see behind closed doors. My two boys have high functioning autism. They both look like every other kid in the neighborhood. They love to have fun and are loving children. However, every little step that they take is not at all without effort. They both have had extensive hours of speech, occupational, and physical therapy. I have put voluminous miles on my car going to and from meetings and therapies. In addition we participate in what’s called “ABA,” which means applied behavior analysis -the use of techniques to bring about meaningful and positive change in behavior. What this actually means is that we have a team of therapists whose job it is to work with my boys to teach them skills that most children without special needs learn automatically. This may include conversational skills, social skills, or gaining independence with daily living tasks.
We have had ABA for over NINE years. I have to say that it’s not at all NORMAL to have people following you/your child at home for several hours a week. I’m not saying that I am opposed to any part of the therapy, but that it is a huge intrusion of our personal privacy and space. In addition, the therapists come to the store, school, and on any errand that the kids and I go on. They follow us with a little notebook or clip board and I sincerely feel as though I’m on a reality TV show. Sometimes, the looks we get from others in public are also very uncomfortable. Throughout the years I have become used to traveling with an entourage of therapists for the kids. BUT it never feels comfortable or what I envision “normal” would be.
Being the parent of a child with a disability or special need means that you are automatically traveling on a different path than you had expected. My husband and I never planned on having this life BUT we would do it all over again if we were asked to. We have a unique story and experience that has built our character and has enriched both of us. We have learned that every little thing our boys do has come with great work and teaching. Every baby step is taken with colossal effort for all those involved.
Our hope is that our boys will be functional and productive members of society. Most importantly, that they will be happy and feel that they are making a difference in the world. My husband and I get tired, yet feel re-energized when our boys do something that we were told they would NEVER do. We feel blessed beyond measure to have this life. To those of you at the beginning of the journey….keep a journal and document where you started. It is by journaling that you will have a real record of those little miracles. Sometimes we forget where we came from and it’s a beautiful thing to look back at your original goals and put the word “MET” next to them. Get support from other caregivers who are going through similar therapy. You will truly be able to empathize with each other.
The moral of this post….DO NOT MAKE ASSUMPTIONS based on appearances. Our NORMAL looks quite different than your NORMAL. Wait, there’s no such thing as NORMAL!!!
By- Cara Koscinski MOT, OTR/L
Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child. Order anywhere books are sold. www.pocketot.com
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