When I started raising special needs kids thirty years ago, I didn’t spend a lot of time thinking about what I wanted for them. I assured them they could do anything if they tried hard enough. I assumed they would graduate from high school and go on to college. I assumed they would be able to navigate the world, finding their niche, and be productive and happy members of society.
In some ways, they met my expectations. They all graduated from high school with regular diplomas, one or two years after their age mates. Two out of three went on to college, although without a lot of success. Two out of three are supporting themselves- minimally, but without government help. None of them are comfortable in the neurotypical world. None of them feel as if they are part of the mainstream.
What I want for GB and Hope, now, after watching my older kids grow up and learning many things that weren’t known in the eighties and nineties, and doing a lot of growing up myself, is different.
I still want them to do the best they can and work hard, but now I acknowledge that there are sometimes that hard work isn’t enough. I want them to do their best, but I have learned that some accomplishments come at a price I am not willing for them to pay. I still want them to productive and happy members of society, but I now know that they will need direct support to achieve that. My older children never had all the support they needed in school because I didn’t know what that support should look like. I knew they had special needs, but I looked at those needs as something that needed to be fixed, not as something that was an intrinsic part of who they are. That was how the rest of the world looked at them, but by accepting the rest of the world’s view, I deprived my older children of the feeling of unconditional acceptance.
I won’t make that mistake again.
These days, I spend as much time making memories and providing varied experiences for the girls as I spend working on skill building. That requires a lot of contingency planning, because Hope still rages regularly. It also requires thick skin as Hope could play the lead role in “The Exorcist” during most rages. Thankfully God blessed me with thicker than average skin and experience finished the job. I am usually oblivious to anything except what the child needs. The jury is still out out on Hope, but I know that GB is already more self aware then any of my older children and is happier and more successful in school than any other child I have ever raised. She has been taught coping skills and she uses them regularly.
That is a good start.