Fragile X makes it on NPR

This morning, Fragile X Syndrome made the news again. NPR did a great special with FRAXA on their upcoming treatments and the history of how FRAXA came about.

It's only 7 minutes long and can be found by clicking HERE.

News clip from Denver

I came across this video clip from my listserv today and thought it was helpful to share. A local station out of Denver did a piece on a family with a 15 year old Fragile X boy. It's always encouraging for Hubby and I to see older Fragile X kids talking and interacting with adults. The only concern we had about this piece is that we don't think scientists would agree that the "cure" is on the doorstep, as the mother stated, but we continue to pray for it.

http://www.kwgn.com/pages/video/?clipId=2912790&topVideoCatNo=undefined&c=&autoStart=true&activePane=info&LaunchPageAdTag=homepage&clipFormat=

Week 2 of School

Half way thru week 2 of school and Jimmo is going strong. As for Momma...still depends on the day. Mrs. Teacher and the aides have been wonderful. We had our first "Back to School" night this week, which was a great opportunity to chat with Mrs. Teacher and get to know her and how Little Man did his first week. He continues to be excited each morning when I get him out of the car and I have to tackle him to get my goodbye kiss in. The GFCF diet is going well. I definitely think his excema was tied to a dairy allergy. I have found the diet to be sometimes challenging for family dinners. Between the countless number of blogs out there and the library, we're slowly adjusting. It's a much healthier lifestyle so it's good for everyone. The juicing is going well. I've been trying to talk hubby into the Vita-Mix (thanks RF!). This "machine" is amazing and I think it might actually grind up a chouch if I tried. Princess has been testing out some of my concoctions and liking.....some.

When working on communication with Jimmo, we've collectively decided to follow the PECS program. We implemented it this past early spring and it's been going well for him. Essentially we've taken a picture of every toy in our house and one of all the food that he eats and we ask him to choose between 2 or 3 each time he wants something. For example, we have a picture of his toothbrush in the bathroom and he hands me the picture after he sits in his chair to let me know he's ready to brush his teeth. Or at breakfast, I show him a picture of a sliced banana and a picture of his cereal and he takes the picture from me that he wants to eat and hands it to me. Around mid-summer we worked on putting these pictures on felt boards with velcro and having him take them off the board and hand them to us. It's been a struggle over the summer with the boards and he usually pushes them away. He would rather take them from your hand. Today Mrs. Teacher was doing Discrimination trials with him and she devised a way (putting it on a slant) to use the board with success. Below is a video that Mrs. Teacher gave me this afternoon (isn't she the best) that shows him discriminating between a picture of the toy that he wants and a blank card - AND MOST IMPORTANT doing these trials ON the board. And Mrs. Teacher mentioned she started taping after doing it like 20 times and he was still successful.

Great job Little Man and thanks Mrs. Teacher for letting us share our achievements with our family and friends.

First Day of School

I guess Little Man had as much anxiety as his mamma on this day because he decided to get up at 5:40. Oh lovely...poor Mrs. Teacher. He was in a great mood all morning. He ate a huge breakfast and we had fun getting him dressed for his first day. When we were about to leave he got a little cranky so Daddy took him out back for a quick swing. That seemed to do the trick - always does. When we arrived at the school, Mrs. Teacher was there to greet us with a big smile. Jimmo charged right into the room looking for the ball popper that he fell in love with during the open house. At this point I let out a sigh of relief, ahhh, he's going to be fine. We watched for a little bit and gave him kisses and headed out. Another rookie move - forgot his lunch at home but luckily we don't live too far. I laughed when the school secretary showed me 3 other lunch boxes brought in late.


So off princess and I went on our first morning. We thought the only way to conquer our sadness of not having little man with us was to have some pancakes at the golden arches. I have to admit, it worked a little bit. Mrs. Teacher called and gave us a mid-morning update. He apparently had a rough 10 minute patch but a rice cake made it all better. We visited a health food store seeking GFCF flours and various diet items. Then princess had gymnastics. She was the only one in her class so she got lots of attention and I got to sneak a few pictures.

I think it was the longest morning of my life. The time went soooo slow. Princess and I came home and ate lunch and then eagerly sat out front of little man's school 15 minutes before the pick up time. He came running down the hall, glanced at me and then ran past me. OK so at least I got a glance and most important - he seemed very happy. Mrs. Teacher was amazed that someone could fall asleep sitting up and eat his lunch at the same time. That's classic sleep deprived Jimmo for you! His daily report came back great. He ate all his lunch like a big boy and it sounds like he actually had some fun. I think they'll work on shapes tomorrow - ;0) Just kidding.

Today is the first day of "school" for princess. We're doing Classical Conversations together. The format has the parents participate with the children and it meets once a week covering all major subjects in classical model. I felt it was a great fit for our family. Last year she was dragged to therapy after therapy appointment and could have used more 4 year old time. So this year I'm dedicating to spending time with her before she starts kindergarten. Although Classical Conversations is a home schooling class, they have welcomed us to join them for this year.


Thanks for all of your amazing prayers for our family. We will continue to pray for all of you with little one's also starting school - whether it's preschool, kindergarten, 1st grade or 8th grade - BIG STUFF.

Closing Ceremonies

If you're a summer bug like me, this is one of the saddest times of the year. For me I would rather put away Christmas decorations then say goodbye to the pool and suntan oil..oops I mean block! ;0) We actually had a stay at home weekend, which has been very rare this summer. We started Friday night with a walk to Dairy Queen, which princess use to call Fairy Queen and I still sometimes make her say it! Yum! And I packed some GFCF cookies for Jimmo which he enjoyed very much. Luckily he never really liked ice cream because of the coldness so I don't have to feel guilty for indulging! On Saturday we started out with French Toast. Then we watched the most highly anticipated game of all summer - Syracuse vs. Northwestern - first football game of the season. Well that didn't work out too good. And then we did a little grill shopping that evening.

But the big closing ceremony was on Sunday. We took the kids to a nice size water park for kids from ages of 1 to 10 or so. It's about 25 minutes away. We went with our cousins last year and had a blast. We loved it even more this time! There have only been a handful of occasions that we can tell Jimmo is having a GREAT time! This definitely was one of them. He let out more eeeeeeeh's (which in Jimmy language this means - WOW mom and dad - I love this place) then we ever heard. He had a grin from ear to ear the entire time. On the lazy river he was the captain on our boat and I think we went around about 6 times the first time we rode it! They have all kinds of slides for all ages. Princess got a little daring towards the end and rode on Little Pete, but Big Pete still awaits us for next year. We packed a fun picnic lunch and then ate dippen dots on the way home.

And then on Labor Day - we truly "labored" around the house. Hubby put the "almost" final touches on the 1/2 bath and did some yard work. And I, well I learned a valuable lesson. Never ever procrastinate on school supplies and go the day before school starts to Target, Wal-Mart and Staples. Rookie move - I'll get better. But in the end, it's 10:15 and we're ready to go.

Last week visiting Jimmo's school, my emotions continued to be full of excitement. It was a beautiful large, bright room within the preschool. His teachers and aids were amazing. He walked right in and began to play. And not to mention that this is what is best for my Fragile X little man - the constant routine, therapies throughout his day and the ABA program. There are only 3 little guys in his class and one teacher and 2 aides. Could it be any better? Although our doctor and clinic has told us this is the best for him, although we've prayed about this over and over again when making the decision and continue to pray about this.....tomorrow always felt like it was so far away. Tonight my heart is heavy that my little man has to go to school. He's going to school before his big sister - who would have ever thought. I pray tonight that this truly is the best for our boy and he will grow and prosper more then we ever imagined.