Watching Ben in P.E.

I had a chance to sit in on Ben's P.E. class on Monday.  The physical therapist leads the Monday class and gives assistance and directed tasks for the children to follow.  She had assessed Ben in September and he qualified for the PT assistance, and she invited me to come visit to see how they do things.

I was surprised by the roller coaster of emotions that I felt while I was there.

• Joy - In seeing Ben, sitting outside the gym while waiting for the previous class to leave.  He was doing such a nice job sitting and waiting, and it makes me happy to see his little smiling face.
• Anxiety - While watching Ben twist around and try to get away, or run off from his paraeducator.
• Embarrassment - When Ben doesn't want to perform a task (or maybe doesn't understand, but I suspect a lot of it is our German stubbornness distilled to perfection in him).
• Guilt - Over the embarrassment and wondering if it's wrong to be embarrassed when your child with special needs acts up or can't manage.
• Pride - When Ben performed tasks, some of which he performed really well.  This particularly is true when it's a task that he's had to work on, like throwing and catching a ball.
• Admiration and Gratitude - For the therapists and paraeducators who work so patiently with all of the children.
• Love - All the time.  But especially when he ran up to me during class a few times because he wanted to see his mom.

I was sitting there thinking about how easy it is for some kids to just go to PE and play.  I wish everything wasn't such a challenge for Ben.  He loves to run, and jump on a trampoline, and bounce on a big ball, but the structure can be difficult for him.  I know that it's important for him to learn, but I wish that it wasn't so hard for him to learn everything.

Letting Go of Dreams, Ours and Rachel's

When we found out that Ben had significant delays in nearly every area of development, we went through a grieving process.  We had to let go of a lot of our expectations and hopes and dreams for him.  We realized that life for and with him would probably not look like what we had thought it would.  Growing up and making friends, playing with other boys at recess, having conversations and other things as basic as those are the things that I dream and hope for Ben now.

It's not impossible that Ben will progress cognitively to the point where he can have normal friendships and relationships.  But it's hard to set our hopes that high, because then if the future doesn't resemble anything like that, and if Ben is dependent on us for the rest of his life and isn't able to live independently, or go to college, or drive a car, or get married, or have children, and those are dreams that we held, it would be like having to give them all up again and go through the grieving process once more.

I still have days and moments where I grieve the loss of The Big Things, because I don't expect them to happen.  There's a part of me deep down that still holds out hope for them, but my goals are more realistic and, hopefully, attainable.  I want to be able to have conversations with Ben.  I want him to be able to express to some extent how he's feeling and to tell us what he needs.  I want him to know how very much we love him, and how much God loves him, and how special he is.  I hear stories of people whose autistic children just suddenly started to speak in sentences in a very short period of time, and they started to catch up in school and were able to be mainstreamed.  It would seem like, if that were going to happen for Ben, we would have seen that start by now.  But I don't know.  I'm not God, and I don't know what the future holds.

Yesterday, Rachel said "It's sad that I won't get to be an aunt."  And we talked about how Ben might progress enough to be a dad one day, but that he might not.  I told her that she could still be an aunt if she gets married and if her husband has siblings.  She said "Yes, but it won't be the same kind of aunt," meaning an aunt by blood vs. marriage.

Rachel has had to give up on a lot of dreams, too, and that makes me sad for her.  I know that she would love to have a sibling (especially a sister) with whom she could play, more than just running around and being silly.  She loves Ben very much, of that I have no doubt.  But I wish she didn't have to miss out on the closeness and companionship that siblings can have.  Sometimes it feels like we've failed her by not giving that to her.  But I know that she has much to gain from having Ben for a brother.  I just hope that she is able to realize that as she gets older, and that we continue to see in her the positive qualities that having a sibling with special needs can develop in a child.  Things like compassion, empathy, a desire to help others and emotional strength.