The struggles we face while raising a profoundly cognitively impaired adult son - Page 3 of 3 -

The struggles we face while raising a profoundly cognitively impaired adult son

It took a bit of digging deep into my reserve of patience, in order to talk him down. If I was tired before, and I was, I’m almost lifeless at this point.

Ideally, I’d do better as a parent and stay in top of all these things. Much like Gavin, I’m far from perfect and on a good day, I’m in the deep end of the pool, barely treading water. I’m going through some very serious shit of my own right now and it’s consuming me. It’s not an excuse but it is the reality and even if I wasn’t so distracted, it’s very difficult to stay even a few steps ahead of Gavin on a constant basis.

He’s not the only one I have to worry about. Both the boys and Lizze are facing their own set of challenges that often requires more of me than I have left to offer. Gavin just happens to require more than anyone else and doesn’t handle things not going his way very well at all.

We’ll call the specialty pharmacy where Gavin received his IVIG Infusion supplies from and request a refill of his Ensures this afternoon. It will be at least a few days before they arrive and maybe more because of the timing. Unfortunately, for reasons I have yet to understand, they can’t set this up for auto refill. When his new shipment arrives, I’m going to have to create reminders a few days before he’s set to be out, in order to request refills a bit a head of time.

My hope was that Gavin would be able to manage his Ensures on his own because he’s so food motivated, he wouldn’t want to ever be without. We will either need to find more creative ways of helping him manage this or just say fuck it, and do it ourselves.

I can’t really explain how frustrating this is but it’s really, really, really, really, really, very frustrating.

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I’m confused, are the Ensure drinks that Gavin drinks different from the ones you can get in the grocery store? Is there a reason why you can’t pick a few up to bridge the gap between now and when the pharmacy delivers his new cases?


That’s too bad. I don’t understand why it’s so complicated to get the drink. If it’s a prescription couldn’t it be sent to a nearby pharmacy and you pick it up? Also, that’s weird that Gavin remembered it so specifically and wrong. If he did have a surplus, wouldn’t a new prescription just be held until he used up the old?

We have lots of prescriptions so we are always going to the Walmart Pharmacy drive-through. But we don’t have the complexity of what Gavin apparently needs. Anyway he should be okay but it’s got to be a frustration.


Thanks for your blog. My daughter (24) works with autistic clients in LA public schools. I often sh…

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