No news and spondylosis

I sent a note to Rachel’s teacher about her IEP but I haven’t heard anything back yet.      I hate no news.  She did bring home a sweet story about a monster that I’m going to put in her keepsake box.  She’ll get a kick out of that when she is older.  Oh, and she wrote a letter to my mom and mailed it to her.  I forgot to call my mom and let her know it was coming so it was a total surprise.  She told me that after she read it she was bawling like a baby.      She is going to write her a letter back. 

I got a news article from Matthew’s p.e. teacher about autism.  The school is insistent he has autism.  But he doesn’t.  I think that I saw a breakdown a long time ago about FXS kids and it stated that 1/3 have autism, 1/3 have autism like tendencies, and 1/3 show no signs of autism.  I put Matt in the 1/3 that have the tendencies.  He is such a sweetheart and likes snuggle and cuddle from time to time.  He does bite his hand and stem a lot.   I found this article today about the differences between FXS and autism: http://www.nature.com/neuro/journal/v9/n10/pdf/nn1765.pdf.  It’s got a lot of scientific language but it’s really good.  I think I’m going to share it with the teacher and paraprofessionals that work with Matt.   

Kevin and I got his birthday presents today.  We got him 3 new summer outfits and a pair of pj pants.  All but one outfit is spiderman.  We also got him a spiderman tv tray about a month back.  Tomorrow we are getting him Charlottes Web with Dakota Fanning to finish him up.  We watched it last night and he was pretty into it.  When Templeton busted the rotten egg he held his nose and starting saying, “Puke, puke.”  Puke is one of his favorite words.  I don’t know why.  

Well, yesterday my husband and I went to see a doctor for some problems that he is having and got told that he has spondylosis.  I found a site on it here:  http://www.spineuniverse.com/displayarticle.php/article1440.html.  It doesn’t sound much fun but manageable.  He also has restless leg syndrome.  He is taking Requip for that.  And he is taking Lyrica for pain.  I’m sure no one thinks at 34 that this kind of stuff can happen to them.  It’s so unfair. 

One of my school friends is moving back to town in about a month.  Isn’t it funny how everyone leaves their hometowns in their 20′s just to move back in their 30′s?    I have another school friend moving back at the end of summer too.  Anyhow, she has a daughter who will be in kindergarten in the fall and she was talking about getting her tested for the gifted program.  I gotta say that after dealing with FXS for 10 years you’d think that I’ve dealt with all the grief of not getting the child I had anticipated.  But I still get a little sad to hear of the things that Matt and Rachel don’t get a chance to have.  Thank God, I have a fantastic husband who helps me to see a brighter light.  We started talking about how blessed Matt really is because he just doesn’t know.  When 9/11 happened the world around all Americans changed.  But not for Matt.  I really envy him for that at times.       X

Yard sale raises money for good cause

This is a sweet story about a boy with fragile X doing his part to help others like him.  I chuckled a couple of times because I could see my children doing some of the behaviors that he was.  Good read. 

Photo by David Gordon

Billy Mitchell, 9, of Cambridge sells lemonade during his family’s yard sale on Saturday morning. Mitchell has Fragile X syndrome, and was one of many people across the state participating in a yard sale to raise money for the Federation for Children with Special Needs.

By Lydia Mulvany/Correspondent

Cambridge Chronicle

Mon Apr 30, 2007, 01:53 PM EDT

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In the sunny driveway of a quiet residence on Bates Street, Billy Mitchell’s lemonade stand is open whenever he wants it to be. The 9-year-old boy sells bright red cups of lemonade for a dollar at a little white table.

It isn’t an easy business to run for Billy. Unfamiliar faces and new situations in his familiar, everyday surroundings can agitate him. Sometimes he forgets to say his closing “Thank you,” and his mom, Jane Wolfson, has to remind him. At one point, he tells a customer to go away, saying he’s closed. Wearing a loose-fitting red shirt, white slacks, and just his socks, he runs into the house.

The stand is Billy’s contribution to the “Very Special Yard Sale” in his driveway, one of many charity yard sales organized throughout the state this past weekend by Wolfson to benefit the Federation for Children with Special Needs, a non-profit organization where she is the director.

Billy is also a child with special needs. He has a mild form of Fragile X syndrome, the most commonly inherited form of mental impairment. According to the National Fragile X Foundation, the syndrome affects 1 in 3,600 boys and 1 in 4,000 to 6,000 girls, and results from damage to the X chromosome.

But Billy wants to do his part. Even though he printed out a sign explaining that his lemonade stand was closed until the second half of the yard sale, he comes out to the sidewalk. “Hello, we’re having a yard sale,” he says to a couple strolling by. “Do you wanna buy my wheelbarrow?”

Wolfson is surprised by his initiative, and very proud. “The fact that he was out here selling lemonade and talking to people he doesn’t know is astounding.”

Billy is doing a lot better than his diagnosis says he should be, and that’s partly because there are a lot of services for kids like him. There is no cure for Fragile X, but speech therapy, occupational therapy, and what Wolfson calls “social boot camp,” a once-a-week group that promotes interaction through sports and snacks, helps Billy significantly.

Finding these services and planning Billy’s education wasn’t always easy, not to mention finding out about Fragile X. Today, there’s a lot more awareness, and Children’s Hospital Boston even opened a Fragile X Program a year ago. But eight years ago when Billy was diagnosed, Wolfson and her husband, Bill Mitchell, had never heard of Fragile X. Still, the early diagnosis gave them a head start on getting informed about the condition and what they could do for their son.

Raising Billy quickly became a second full-time job. “We work enormously hard, and we do all different kinds of things. He’s enormously rewarding and fun to work with,” says Mitchell.

The real crisis came when Billy reached school age, and the family had to determine an education plan with his school. They didn’t know their rights, they didn’t know what they could ask for, and Wolfson thought she would need to hire an advocate. That’s when she stumbled on the Federation for Children with Special Needs online. She also stumbled on a new career.

The Federation reaches 40,000 families each year, though there are around 300,000 children either on education plans or with significant health issues. Wolfson was so impressed and thankful for the help and information they were able to offer her that she got increasingly involved in the Federation.

About two years ago, Wolfson prepared to make an even bigger commitment. She left her job at Putnam Investments to pursue a master’s degree in education at Harvard. After graduating, she was named the first full-time director of the Federation, a job she has had for almost a year.

Wolfson hopes the yard sale will pick up enough momentum to become an annual event, because it’s so appropriate to the spirit of the Federation. “At its heart it’s really a grassroots organization. It was started by a group of moms around a kitchen table after law chapter 766 passed, which entitled all kids to be able to go to public schools.”

Despite all the special services and education, though, Billy benefits most from loving family and friends.

“We usually get together on weekends, and my 8-year-old son and Billy play together,” says Deb Squires of West Roxbury, Billy’s aunt. “It’s just been a great experience. I have a typical son, and over the years he has had to understand that not every child is like him. He loves Billy and he has grown to accept Billy for who he is, and they love each other.”

article can be found at: http://www.townonline.com/cambridge/homepage/x628669005