Figuring it out

I am in uncharted territory as I navigate what it means to be the parent of an adult child with autism or developmental delay.

Alan is now nearly 32. We still have to pick and choose where we take him, and when we take him someplace. This last weekend, I went to my family reunion, and chose not to take Alan. I couldn't drive, and had to ride with someone else. Turns out it would not have worked out to have him with me. Additionally, I just feel better in that kind of setting if his dad and I are both there. Sort of a tag team situation.

Right now, Alan paces and claps incessantly, talks to himself, and sings to himself. He is able to engage with others most of the time, but if he is stressed, he will pace and clap even more. We can easily do things like go out to eat, go on vacation, sightsee, because this is easy for him. He enjoys these activities. He does not always want to spend the night with us on the weekend any more, so doesn't go to church very often. However, when he does go with us, he continues to sing to himself and clap, although very quietly.

We are having family in this weekend, and want to include Alan as much as possible. Trying to give him autonomy means that he has restrictions as to when he wants to come over. Not on Friday, because he and his friends go out to eat. Not on Saturday morning, because he wants to go to the public library with his staff person. Usually on Sunday, though he knows that he must be clean, with clean clothes, and this does not always happen.

Most parents of 30 somethings do not take their children everywhere. Why do I feel so much guilt? I guess because our child is perpetually a child.

Will post after this weekend as to how it all worked out.

Comments

  1. Deb, I love you...and I love Alan. Missed seeing him when we were there for the reunion. You are a wonderful mom. God gave you Alan because you are exactly what he needs.

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  2. I haven't ever been close to someone w/ autism, but I know a lot of people who have. A friend of mine started a support group for moms, and another has a book coming out in the next few months about autism. My heart goes out to you.

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