Friday, June 15, 2012

One big thing that made Lucien's (my) life easier...

We all have little things that make daily life a little easier or more manageable. Some things that are merely a convenience to you or I can be a game changer for child with special needs. I started reading to Lucien right away, as soon as he came to the US at 21 months. Literally...when I traveled to Ohio to meet him I had baby books in my luggage. We read our first book together sitting on the edge of the hotel bed our first morning together. Reading became many things. It was a means of introducing an unfamiliar language, stimulation for his senses and a close, quiet time that we could share apart from the noise and chaos of three older kids. Lucien loved our reading time as much as I did. As he grew older though, reading became a source of frustration for him. He was a little bit late starting to read. For reasons I still don't really understand, Lucien was a much better speller than he was a reader. He began to catch on in first grade, but struggled frequently and was generally about a year below grade level. Reading was not something Lucien could do independently due to his CP. Visual tracking was difficult for him and his interest level was higher than the picture books that had optimal text size and spacing for him to successfully track. Even if he could track successfully he couldn't manage to turn a single page without assistance. This was frustrating for a child who strives for independence. 

Last spring, to celebrate another successful semester of college, I bought myself a Kindle. I quickly realized that I was able to adjust the font size. I increased the the text to that each page contained 20 -30 words. I presented it to Lucien and showed him how to advance the pages. I asked him to read for a few minutes. I kind of hovered at first, and as he began to read page after page I started to get really excited. I haven't really had much of an opportunity to use "my" Kindle since then. Lucien sleeps with it under his pillow and the first thing he does each morning is read for a minimum of 30 minutes. School ended for the year on Wednesday. I am proud to report that Lucien is reading at grade level completely independently! I don't know if this would have been possible without the Kindle. 

Friday, June 8, 2012

My little Sicko :(

Obviously this is an older photo, but it fairly accurately illustrates how Lucien is feeling today! I don't have friends with kids who have CP so I never know what is "normal" in any given situation. When Lucien gets sick it effects him much more than most typical kids. Even a little cold will create havoc globally. It used to be that he would have toileting accidents a day or 2 before any other symptoms appears. If he had an accident at school, I knew for sure that he was coming down with something. Even though he had attended pre-school and remained fairly healthy, kindergarten was rough. He caught everything that was going around. I was beginning to be concerned that his absences were going to set him back academically. Fortunately, the has enough control that accidents are no longer an issue for him, but it still messes him up. He's healthy most of the time, but when he gets sick now his dystonia gets really bad. He can't feed himself, he has a hard time sitting up, and gait training is a disaster. It effects his speech too. it's more difficult to understand him. It takes Lucien longer to get over an illness than most kids too. A couple of years ago he got the flu (in spite of having had his flu shot) and it took six weeks for him to fully recover.

So, Lucien came home feeling pretty lousy, but he isn't much of a complainer. I think he's glad that he'll get to lay around watching TV, playing video games and eating ice cream for a few days. Does anyone else's kiddo get more sick than most?

Thursday, June 7, 2012

The end of the school year is upon us and I feel it is important to offer my sincere thanks to all of the folks who work so hard to ensure a successful school year for Lucien. He is "stepping up" to fifth grade on Monday! Ubelieveable! Thanks so much to "team Lucien" ... Cassie, Debbie, Diane, Kathy, Sara, Jenn... And an extra special thanks to Angelina, who is always just what Lucien needs her to be. Much of Lucien's academic success has been possible because she was in his corner. We also owe a ton of thanks to Lucien's friends who are kind and intelligent enough to look beyond Lucien's disability to see the more-normal-than-not kid he is. This great group of boys and girls have been his friends and his cheerleaders. They have included him in team sports with the attitude that including him is more important than winning and he worked really had to not let his team down. Thanks so much to all of you! Some of you we will see again next year. Some of you will be moving on to other endeavors. Good luck in all that the future holds!

Saturday, June 2, 2012

How do YOU address a child with special needs?

Do you smile at them? Do you say"hello"? Do you address their caregiver instead? Do you pretend not to see them at all? 
Sometimes well-meaning people lose sight of boundaries and common sense. Today, for example, I was at the grocery store with Lucien and his 7 year old sister. We decided to use his gait trainer rather than the wheelchair on this particular excursion. Just after we arrived and entered the store we stepped off to the side so I could correct an adjustment on the gait trainer. I finished and as we prepared to re-enter the "flow of traffic" a woman headed out of the store put her hand on Lucien's shoulder and giving it a little squeeze said,"Awww, baby." I was furious! This was not a friend or even an acquaintance. This woman was a complete stranger to myself and my children. The fact that my son is disabled does not negate his right to dignity and respect. I didn't see her lay her hand on any other child's shoulder. Maybe because common sense dictates that we don't go around touching children that we don't know. This is the least of my anger. Lucien is not a baby. He'll be 10 in a few days. He does not appreciate being referred to as baby or a baby. Lucien is not pathetic. He doesn't need or want the sympathy or pity of that woman or anyone else. 
This stranger saw Lucien and in that instant concluded that he was pitiful. Why? Because he was using a walker? Because he has CP? Lucien doesn't feel sorry for himself. If you asked him, he'd probably tell you he's got it pretty good. He has a family who loves and supports him. He has wonderful friends who include him in everything they do. He has a lot more than many kids his age. In fact, by far, the worse thing that happened to Lucien today was that a stranger put their hands on him in a way that frightened him. He though this woman was trying to snatch him from the store. A single touch, by a well-meaning stranger, erased his sense of safety.

Friday, June 1, 2012

Words of Wisdom from Lucien...

In spite of the challenges that he faces on a daily basis, Lucien is one of the most positive people I know. A couple of years ago we were at my mother's home for Thanksgiving. We have a large, close extended family and traditionally spent all of the major holidays together. The dining room table was extended into the living room. Lucien let me know that he needed to use the bathroom. There was little space between the table and doorway and I am not a tiny person. I said, "I don't know Lucien! I'm not sure I can make it through there. I don't think I can!" When we finally squeezed through I told him, "Oh my gosh! We did it!" Lucien looked at me very seriously. He said, "You know what your problem is mom? You don't believe in yourself. Take me for example..." He went on to describe a specific incident in which he had faith in his ability to perform a task and was ultimately successful.
Just the other day in the car Lucien said, "You know, mom... There are 2 kinds of people in this world. Some are glass half empty people and some are glass half full people. I think I'm a glass half full kind of guy."
You sure are Lucien...
How is it that he's got this all figured out at nine and I'm still trying to figure it out?