Spring Break!

These are always difficult weeks if we are just at home and not on a vacation somewhere. I always feel like I have to be an event organizer. So we started off the week with a pretty good bike ride. Steven is doing great with his riding, but I sometimes forget that it still takes a lot of focus for him. We rode around town, which was only about 3miles, but there are a lot of turns. One time as we made a hard right I heard the snow crunching behind me (yes, there is still snow here) and Steven saying “I’m o.k., I’m o.k.” I turned around to find him backing out of a snowbank convincing himself it was alright. He got right back on like a trooper and we continued on our way. By the time we got home he was drenched in sweat and exhausted. He continued to tell me how tired he was for the rest of the day and could hardly hold his head up at dinner. Wow, if I could only get him to do that everyday.
Then later in the week I got to go skiing with him with the disability program. It was the first time I ever skied with him. I am so amazed at the physical gains he has made this year. Skiing used to be quite the process for him. In the past it took two teachers and all there strength and tenacity. But now he is finally skiing independently. We spent the morning with an instructor so I could see where he was as far as his ability and then after lunch he and I were on our own. It was so fun to see his progress and I could finally see a day in the future that we could go out and do this together.
Our last outing of the week was a fun trip to the Denver to the Zoo. We go to be outside and enjoy a picnic with one of our good friends and then enjoy the zoo on a warm spring day. All in all is was a pretty good week, but I am ready to get back to our routine and stop being the activity director.

What will we do this summer?

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We picked Bekah (Steven’s sister) up from the airport this week so he is in heaven with his princess home. While we were getting ready to go to the airport we decided to fix Steven’s hair so it would look good when he saw her. So while fixing his hair I asked him if I could put some goop in it to make it spiky. He looked at me and said “Did you say poop?” I laughed so hard I thought I might bust something. Did he really think I would put poop in his hair?

Steven and I were having a lazy Sunday night at home last night when I asked him if he wanted to play a game. He responded with I want to color. He had been given a coloring activity page at church that day, just as he had dozens of times before. But he usually doesn’t do anything with them. But last night he asked to color it. I thought o.k. whatever. I got him the crayons and left him at the table thinking, right, in a few minutes or less he’ll say I’m done and there will be a few markings on the page. Steven just doesn’t do much of this kind of play independently. I am used to sitting with him and directing his every move if I want him to do something like color or practice writing. I was sitting vegging in front of the TV waiting for the “I’m done” when I realized it had been a while since I heard anything from him. I looked around the corner to find him extremely focused on his page. When I got over to him I couldn’t believe what I saw. He had colored the whole page and with purpose. He then proceeded to tell me that the person he had drawn in the middle of the page was Tinkerbelle. I felt the hot sting of tears in my eyes and just began to cry. I knelt down and gave him the biggest hug and told him how proud I was (yep, I am crying right now as I recall it). There are times I just give up on Steven ever developing some of the skills we all want our kids to have, and doing these kinds of tasks was one of those things I thought he would just never do. Just when I finally give up God surprises me again. Who ever thought that a simple coloring page could evoke such strong emotion.

Steven goes through fazes depending on the movie he is into at the moment. Most of the time they involve a prince or someone who is the hero to a damsel in distress, and in the end they fall in love and live happily ever after. Some of his favorites are Enchanted, Aladdin, Hannah Montana, The Little Mermaid and currently The Hunchback of Notre-Dame. He always considers himself the prince and his sister the princess. So he watches the movie and then acts it out, continuously. He wears hearing aids so he doesn’t always get the right pronunciation of the characters and I had to laugh when after watching The Hunchback for the 5th time this week he said he was “Crazy Photo” (Quasimodo), and the Gypsy girl was cheesy girl. We love these mispronunciations they always makes me smile. So he is currently wearing a cape and walking all hunched over, but this “Crazy Photo”, has a belt and sword. Steven must always be the prince. He considers himself the prince and his sister his princess and he fights evil dragons for her all the time. He loves to pretend he is rescuing her from and evil dragon and then he and she will live happily ever after. It’s funny, but he seems to be fine with her having a boyfriend. That may change when she finally gets married and doesn’t live here anymore. There may be a sword fight.

God amazed me again today. Here we are having a lay around and get Steven well day and God sends and angel to cheer him up. Steven absolutely idolizes his big sis’s old boyfriend Garrett. He thinks he is so cool. So today Garrett was going to walmart and called to see if Steven would like to go with him, just to get out. What a blessing, for Steven to have a peer to go do something with, and for me to have some free time. It is so encouraging to see a youth reach out to a kid like Steven. What a small but meaningful gesture.

Sick!!! Happy Valentines Day

Steven has a terrible cold. I hate it when he is sick. It is so sad. Because of some anatomy issues that are normal in people with Down syndrome it makes having any kind of sinus problem worse. He just can’t breath through his nose at all. We work on him with sinus washes and nasal spray and cold medicine, but it is just a horrible week no matter what you do. So here we go again. But it is the first time he has been sick this year and that is such a blessing. Years ago when he was under 8 we spent most winters in and out of the hospital, on constant antibiotics and having ear and sinus surgeries. Those were tough years. I praise the Lord that I was younger and had more energy because we just operated on no sleep most of the time.
But even though he has had sinus surgery to open up his sinuses, and his tonsils and adenoids removed he still struggles with any kind of sinus illness. He is such a trooper. He takes his medicine and when it works tells me how he is not sick anymore, only to have the symptoms return a few short hours later. I will pray that this one will go away on its own (and soon) without antibiotics. And maybe next time his immune system will be that much stronger.

Steven has always loved guitars and has at least 3 toy sized ones. He jams out on them and sings love songs to his sister. So we decided to try Steven in guitar lessons. We were lucky enough to find a guitar teacher that has a brother with special needs. He was more that happy to give this a try. I am happy to report that it is going well. After 4 lessons, Steven is learning to play some simple chords. I have to admit I was a bit skeptical, but once again Steven has exceeded my expectations.