Does Alex know us anymore?

As we were camping over the weekend, we visited Alex on Monday this week, and it was a pretty awful visit. Within about two hours we had to leave due to how much Alex was hurting himself. Though sad, this wasn’t terribly surprising given how Alex has been lately… until we read the report the next day and realized Alex was only unhappy around us.

The official report, regarding Alex’s self-injury, states, “but this behavior stooped as soon as his parents walked out the door and Alex continued in a good mood like when i arrived on shift”. Alex apparently had a wonderful day if you take away our visit. Before we arrived, he was happy. After we left, he was happy. Only while we were there did Alex exhibit any serious self-injurious behaviors.

I have wondered in the past if he is angry at us for leaving him in the care of strangers, or if he’s simply forgetting who we are. This report takes all my fears and turns them from a simple guilty complex into reality. It’s happened more than once: we’re told Alex is doing well, but when we arrive he seems very unhappy. I tortured myself thinking the worst, but in the back of my mind I always hoped I was just being paranoid. After this latest report, though, it seems like Alex really does have a problem with us.

This is just about the worst thing I could have imagined happening when we asked the state to care for him.

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4 Responses to Does Alex know us anymore?

  1. Jane (Spencer's mom) says:

    Do you think it could just be the “disruption” in his routine that upsets him? Not resentment at you or forgetting you but simply the fact that his daily routine is not routine on the days you all visit?

    I can only imagine how heartbreaking it is for you and Karen. I often think of your Alex and your family and send nothing but good wishes and prayers.

  2. Dad says:

    It’s very possible I’m overreacting, but it’s hard not to wonder how Alex feels towards us. We only see him a few hours a week now, and his behaviors at our last visit certainly seemed awful considering he was fine before and after.

    The disruption could indeed be a problem, and I hope that’s all it is, but even then we’re assured of more sad than happy visits. Still, your perspective does give me a bit more hope.

  3. lani says:

    God bless you for advocating for your autistic son. Medical cannabis/marijuana for autism is definately a promising treatment and is becoming more and more plausible for those of us who are living with severe autism and challenging behaviors that do not and have not responsed to orthodox treatments. Plus, the science behind medical cannabis is most interesting. It appears to be safer, less toxic and more thearepeutic than most of the drugs on the market to help autism. No, it’s not the magic cure, but for goodness sakes, if you know anything about autism and self injury you will have compassion and love to help these poor children and adults who suffer from such a devastating behavioral disorder comorbid with their autism. Research is clear there are few treatments that help autistic with aggression and self injurious behavior. Cannabis therapy , done right and done for medical purposes only, is one such promising alternative treatment. It’s too bad so many fakes and frauds who abuse the medical marijuana card are making it difficult for people who truly benefit from this life saving or life enhancing medication.

  4. lani says:

    There is a family in California with a son very much like yours. The autistic son does not have tuberous sceloris, but he’s very similiar to your son and I think you’d find their case helpful. google severe autism and youtube.