Down Syndrome Awareness

Yesterday was World Down Syndrome Day.  A day to promote awareness.  I don't even remember where I learned that.  Probably on facebook.

I was definitely aware of Down syndrome yesterday as I raced to and fro throughout the day, but not because of the label the day has been given.  I was struggling.  Struggling, again, not to be overwhelmed by the challenges Isaac's Down syndrome bring into his life and mine.  I usually try to stay upbeat.  I usually don't even have to try very hard, because, as you can see from the picture, Isaac is absolutely adorable and brings joy beyond expression into my life.  But yesterday things I had been experiencing lately started adding up to feel like a pretty big weight.

Last week,  I went to Omaha and, for various reasons, it ended up being a trip for just Kimball, Josie, and I.  Kimball spent much of his time at the National VEX Robotics Competition (which is good because that was the reason for the trip).  His team came in 14th out of 40, for those of you who were wondering.  Josie and I watched whenever Conrad Ball's robot was in play, but we were left with a lot of down time, so I took Josie and two other little girls to explore Omaha.  We went to the zoo and the children's museum.  We ate at the Pizza Machine (think Chuck E Cheese, but bigger) and we toured the Mormon Trail Center that is next to the Winter Quarters Temple.  We had tons of fun.  I could never have done all that with Isaac in tow.  Or, I could have, but he would have been miserable much of the time.  Many of those places were loud and new, and therefore overwhelming to him.  The robotics competition's low light and loud buzzers would have been especially hard for him to bear.  Half the time, I missed Evan and Isaac as I thought of what their reactions would have been to different things, and the other half I was so grateful I hadn't brought Isaac along that I felt bad about it.

Fast-forward a few days.  I'm helping Isaac with his homework and talking to him about opposites.  He acts like he has not one clue what the word meant.  All I can thing over and over again is--He used to know this!  I suppose it has been awhile since the word "opposite" has been mentioned to him.  I try to shrug it off as we move onto the fun sticker book he gets to do after homework.  But now I see that most of the names of shapes have slipped his mind as well.  At this point, I can feel despair begin to creep around the edge of my consciousness.  I try to push it away, but panic then seems to want to take its place.  Questions dart through my mind:  How can I possible keep him current on everything?  How on earth can I find the time each day to have him count, read, review shapes, and opposites and the hundred other things that I don't even know that he is forgetting?  And how can I possibly add vision therapy to all of this?

The last question is added by some part of my mind that must not be aware of the current fragile state of my emotional health, but is fully aware of the recent recommendation that we add a new therapy to Isaac's schedule.  My mind does that sometimes.  It tries to cram all things dreaded into my thoughts at once, just to see if it can break me.  But, the jokes on it because I don't break and run crying into my room.  I simply feel like giving up.

The morning after that marvelous evening spent trying to refuse to become overwhelmed, I took Isaac to the eye doctor.  The doctor recommended bifocals to try to aid Isaac in his focusing efforts.  His eyes have had such a hard time lately.  I know I should be grateful that we live in this modern time that can provide so many solutions, but I'm not feeling excited that he can be helped.  All I can think is that I hope Isaac doesn't break something as he tries to get used to his new glasses.  I am very worried that he will fall down.  A lot.

Isaac's eye doctor also shared with me that he didn't feel Isaac was a good candidate for vision therapy.  (He really doesn't think it works at all, although I could tell he was only allowed to say that it was controversial and thus far unproven in the scientific world.)  Isaac's OT is recommending he start vision therapy right away.  Both of these people I highly respect, and I take their opinions very seriously.  I am now left to sort out what to do.

I hate vision therapy.  My experience with it while seeking for ways to help Evan with his reading was not good.  At all.  In fact, it is the worst torture I can think to inflict on someone when considering the wide ranges available in the therapy world.  But, if it could work.  If it could help Isaac focus and see better, I would do it in an instant.  His eye doctor said, "It's up to you.  I just try to keep things simple as I consider quality of life verses expense and trouble.  I'm just trying to be scientific."

I told him I agreed with him and felt that considering the quality of the gains that would be made verses the time, expense, and trouble was a smart way to go.  But, as a mother I have one other overwhelming consideration:  guilt.  I have done many things and will continue to do many things simply to keep from feeling guilty.  If vision therapy might help a little, don't I HAVE to try it?

I really don't even know right now.

Yes, I am feeling very aware of Down syndrome right now, which stinks because usually I just like to push that piece to the back burner, enjoy Isaac, and take life as it comes.