Having a Child with Down Syndrome, Part XCIII: Hard to Accept

Copyright © 2016 Stephen Hawley, all rights reserved.

This blog is difficult to write and it’s likely that it will be half baked, so take the content with a grain of salt and accept that I’m writing this and the entire blog while we’re at it to help codify my thoughts, understand my emotions, and provide a reference for other parents in the same boat, although the last is a distant third.

One of the things that happened with us early on in Alice’s life was that we spent a lot of time trying to kindle hope in the face of the trauma of having a baby with multiple disabilities. This process was necessary. Hope is what provided us with the strength to face an unknown and manage to get through the early intervention, the therapies, the oxygen tank, the medications, all on top of being first-time parents.

Now, nearly 13 years later, I’m looking at Alice with an eye towards what was her long-term future when she was a baby, but is rapidly becoming her near-term future. I look at her behaviors and her abilities and I’m starting to lose hope. Alice has a number of problems that stem from the stroke she had as a newborn. One of the problems is her executive functioning, which is hampered by damage to her frontal lobe. Alice has very poor impulse control and no amount of positive or negative feedback has changed that. Alice will still touch people inappropriately, play with things that are not hers, fixate on things, ask the same questions dozens of times, and so on.

Looking at that and the trajectory of her maturity, it is getting harder and harder to imagine her living an independent life. It’s hard to imagine her holding any kind of job without a job coach. It’s hard to imagine her having a meaningful relationship.

It sounds like I’ve given up. I haven’t. It’s just that I’m trying to figure out what the realistic options are and how to frame a future for her that will be fulfilling for everyone.

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