Independence is a double-edged sword around here. Of course, we want our children to grow into independence, but, especially with Ben who has intellectual disabilities, it can backfire. Bigtime.
Not long ago we had an episode that could have had a far worse ending, I was in the bathroom and heard a crash upstairs and then a super-satisfied, “Dewr id id!”. Though it sounded like everyone was fine, the crash was serious enough that an investigation was warranted, so I trucked upstairs to find the above scenario. As best as I could ascertain, Ben’s car had rolled under his dresser, and he came up with a solution to get it; tipping the dresser over. (The dresser has since been secured.)
This leaves us stuck between caring for a child who’s living skills are stuck in the toddler era, who needs us to help him with everything, and teaching a big kid with toddler-like mindset living skills for independence that can wind up backfiring.
The first time this problem arose was when our older son who also has an intellectual disability was in Early Intervention (EI) Services. His Occupational Therapist brought a cute little board of different types of locks to teach him fine motor skills. Our busy little toddler mastered the board and then used his newly acquired knowledge to let himself out of the house unsupervised. Repeatedly. We wound up putting combination locks on all of our doors to keep our children in, and still use them 14 years later.
We’ve been reluctant to teach Ben how to get his own meals, for fear of opening Pandora’s box. The same with bathing and other daily living skills.
Then we feel guilty for not teaching our son independence. It often feels like a no-win situation.
There’s no owner’s manual for kids in general, and even less so when their needs are more complex. We play each day by ear, hoping for the best. On one hand, I’m thankful my sons are ambulatory and capable of doing so many things, on the other hand, Ben’s physical size and ability to do so many things with the intellectual capacity of a toddler keeps us in a constant state of hypervigilance. And we fail, a lot.
Each parent has their own way of doing things and their own standards they emphasize. We want our children to reach their goals, dreams, and aspirations while keeping them safe. How I wish I knew how to do both at the same time for my child with complex needs. We constantly strive to serve our children to the best of our ability, balancing independent living skills and safety on a moment by moment basis. We try to avoid getting hung up on the short term frustrations and keep a long view of planning for the future of our children who deserve to be capable and equipped for adult life. The challenge, as with all kids, is keeping them safe in the meantime.
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom
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