Spring Break

Spring break was here and gone before I knew it! We had no plans, except for one day, which I will tell you about. The rest just kinda . . . . . happened. This triggers the planner in me every year – it makes me wonder about summer and what will fill my son’s days for those three months. If one week is a bit too much unstructured time for him, what about the entire summer? Yikes.

Our one planned day involved having some friends come visit from out of town. We all lived in the same city years ago and we met because of . . . you guessed it, Down syndrome. Our two boys have enjoyed each other’s company a lot lately, and we have even met halfway between our towns to eat together as families. It is nice to have another mom of a teenage son to discuss similar issues with. She is a thoughtful and conscientious mom with lots of good ideas. Because of her other two teens’ activities, she stays super busy but is so devoted to her middle guy, my son’s friend. I love her. Move back, please, J!!

When they arrived, we went straight to our nearby indoor pool for the boys to enjoy some swimming. This was mutually beneficial, as we moms got to get in lots (not all) of our confidential chatter without being overheard! When they were waterlogged, they got changed and we walked to a restaurant for sustenance (and a milkshake). The boys seemed somewhat more shy while we were at the table with them. Maybe we should have set them at their own table? At any rate, it was a great day with very special friends. That was a highlight of our spring break.

Now the boys are texting each other. We are loving this typical teen behavior and glad they can keep their connection going. Now it’s their turn for confidential chatter!

Lookin' Good

What is it about the stigma of kids with disabilities that makes me try a little harder to make my son look his best? I do not want him treated poorly because of the way he looks, so the pressure is on to help him look the best he can. (I have always tried to keep his mouth and nose clean as he has fought against me!) Why is this more important with him than it was with his brother? It definitely is, though.

Now that he is older, we go ‘round and ‘round about the hair. The fact that he is a teenager and does not want me to style his hair, but wants to do it himself is a sticky situation (almost daily). He likes to comb it straight down into a line across his forehead. I can’t stand it and think it looks awful. I try to playfully get in one little brush swipe to the side, but he goes nuts! The way he styles it reminds me of those bowl cuts that people often give kids with Down syndrome. (Why does this happen???)

It is true that the way we are treated is often influenced by how we look. I think that many parents of children with special needs go above and beyond to help their kids look good because the cards are stacked against the initial perception of our children. Some would say that it is other people’s problem if they don’t like my son’s hair or the leftover lunch on his face. But the reality is, it is not. It becomes my son’s problem.

Day 26 -- Teen Scene

Because my son has Down syndrome, does it mean he does not go through the same developmental phases as everyone else? No. He did not escape teething, the terrible two’s, or the anxiety of the first day of school. He now must go through adolescence and experience all that that has to offer.

I must say, he seems to have passed through much of it unscathed. He has the occasional attitude. When I press for info or am overly protective, I get the suppression of the eye roll and the sigh of exasperation. He does not, however, seem to suffer from the extreme self consciousness of many teens. Rather, he seems to enjoy some limelight and to be fairly self confident.

What does he enjoy? Playing basketball is a passion. He plays alone or shoots with whoever happens to be around at the fitness club that he walks to. He loves any sport (especially soccer, baseball, and ping pong) and enjoys winning at board games and card games. He likes tv, action movies (and any movie), and watching football. He has long enjoyed writing stories and now does it on his laptop. He is better at anything on Wii Sports than any of us and has lately grown very fond of Wii Fitness, coaching all of us on its finer points.

One of his favorite activities that he enjoys with his dad is playing Rock Band. The feeling is mutual; his dad can pretend fame right along with his son and they can learn songs together. Dad does guitar while N plays drums. They learn and master songs, go on to others, then get a new CD. Just today I heard N playing one of their favorites in his room -- “Long Time” by Boston. Loudly. It made me smile to think that this familiar rite of passage has not escaped him either.

Now, People, Get Real

For some reason, N.’s various comments about life in general have me laughing so much lately. He has so many one-liners that I can’t keep up with them. Here are a few:

*We thought we would have the pool to ourselves several nights ago, but there were a few families with children there. (No tiny ones, though, and crying is something he detests.) N’s disappointment was palpable and when I asked him about it, he said, “I think I’ll tell them it’s past their bedtime.”

*I think he has picked up on the anxiety I have about his new school and entry into high school, so he tries to keep things light. (Always so concerned for me—SWEET. Except for when he is in teenage mode.) I was expressing concern for his back, which has been hurting a lot lately. His backpack is ridiculously heavy, and I said that it was. His reply --- “That’s just the way high school rolls, Mom.”

*We were discussing his sleep patterns and the doctor’s recommendation for another sleep study. I told him that they might recommend another C-PAP machine or another surgery. He said, “I’ll stick with Plan A.” I burst out laughing. (Not sure if he meant not going for the study or getting the C-PAP machine!)

*He loves to sort through the mail in the afternoon and I heard him muttering, “Now, people, get real”. He had come across a catalog selling Christmas wreaths, and he was letting them know it is way too early!

He. cracks. me. up.