One Foot In Front of the Other

When we went to pick Alan up for a Doc appointment on Friday, his care worker told me that he has been telling his adoption story to everyone over the last week. "He just started telling everyone who would listen that he was adopted," Madeline said. She told us the story went something like this: "Did you know I am adopted? My mom and dad are not my real mom and dad. They adopted me when I was a little boy, not a baby. They are not my real mom and dad, but they have been good to me, and they taught me a lot of very good things." High praise. We cherish this small window into Alan's mind. We have wondered over the years what Alan thinks about being adopted. Now it seems he is becoming introspective, to a point, and telling that story in his own words. You can't ask for a better commentary on your parenting.

Alan is changing, not wanting to bathe or wash his hair. He has a fear of it somehow, maybe thinking that the showering makes him weak. In his kitchen are glasses of water lined up to drink "in case I get weak" - he believes that this will help him. I am the new enemy today because I told him he needed to shower. He slammed the door in my face as I left his apartment. I don't take it personally, but realized the smiling, happy young man I have known for 30 years is fading. Lots of changes.

I think when we are going though hard times, we often forget that there are people on the road with us, suffering just as we are suffering. I posted last weekend on the Huntington's Disease Facebook page, and found some folks walking this uncertain road with us, suffering with us. The pain, grief, and anger is universal when a child or family member is diagnosed with autism, Huntington's, or any other disorder that robs us of the person we love in one way or another. In many ways we do suffer alone, must suffer alone; but we can take strength from the experiences of others as we walk the uneven road together. We need the support of friends who may not be suffering as we do, but empathize with our suffering and are willing to walk with us. C.S. Lewis said "Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival." Connecting to people along the way makes the way easier.

Since Alan's diagnosis with Huntington's, we have wondered whether the behaviors/symptoms we see are autism or Huntington's. We are beginning to realize it is a very fine line. Many of the autisms he has displayed over the years are still there, but magnified. Our biggest challenges are in the areas of behavior, when Alan becomes unwilling to cooperate, or unwilling to participate in daily living tasks. Thankfully, the Huntington's Disease Society presents webinars for caregivers to highlight ways to deal with aggressive or escalating situations. Some of the techniques described in the last webinar are helpful for anyone dealing with someone who has an altered view of the world around them. Our children with autism often lash out because of a trigger in the environment. For us, it has been helpful to assess the situation by looking at what Alan is doing, what he is saying and how he is saying it, and modulate our response to try to defuse the situation. I think t...

Today I was in a meeting with other Literacy Facilitators (coaches) in my district. This school year, we begin each meeting with a quick write using a book, poem, or picture as a stimulus. Today we wrote about courage. Being a parent takes courage. I don't care who you are, how perfect your kids are, you need courage to keep parenting (especially during the teen years!) If your child is autistic, you have to have a different kind of courage. You have to be willing to push and push. To go against wanting to allow your child to just 'be himself' and instead push him to be what he cannot be alone. If your child is autistic, he will not be able to understand the world as you or I do. Your child will need you to help him interpret what he sees and hears. I once read a book titled "The Man Who Mistook His Wife for a Hat" written by Oliver Sacks. Sacks is a great doctor who probably understands neurological disorders better than most. In this book, one patient...