Matt’s Getting There

Matt did a little better this morning.  He was still a little upset that Rachel was going to Grandma J’s house and he wasn’t.  He did seem more accepting of it though.  Once he got to the daycare he was a bit confused.  I think by Monday he will get into the swing of things pretty well.  I’m glad that it only takes a week to transition him instead of months, like it used to. 

My hubby is home sick today.  He had a rough night.  I don’t think it helped that Rachel slept with us.  I have a feeling that waiting at the school so long, waiting for me yesterday, made her feel real insecure.  So she asked if she could sleep with us.  She is a violent sleeper.  At one point I woke up and she rolled over and smacked Kevin in the face!!  Luckily, he is a deep sleeper and he didn’t wake up or get up bruised.    

I have been forgetting to mention that our van is going to get fixed.  As horrible as it looked after the accident it should only cost $7500 to fix it.  They are estimating about 11 days worth of work to it and most of that will be body work.  The shop doing the repairs warranty their work for the lifetime of the vehicle.  Kevin and I have to go up to get Austin on the 16th and then Lauren on the 23rd so hopefully by one of those Saturday’s it will be ready to pick up. 

It’s Over!

School is out!! 

My hubby ran home to work on the truck so he asked me to just have Rachel walk home since he was there.  I called the teacher and left a message.  I asked her to call me back to verify that she got the message.  By the time I got Matt picked up I still didn’t have a call from the teacher so I swung by her school to make sure she wasn’t standing around waiting.  She was.  And she was stressing!  Poor kid. 

Well, now Matt wants to know why Rachel is staying at home and he isn’t.  So, I told him that he was going to go to his daycare and eat lunch.  Food usually always satisfies him.  Not today.  He wasn’t hungry.  He was full.  Matt is never full.  So for the 20 minute drive to the daycare I got all kinds of comments from ”don’t want to” to “goin fishin wid granpa.”  I mentioned that he was going to get to see their horse and that worked.  I was happy they were still playing outside and they walked him over to check out the horse while I signed him in.

So tomorrow we get to begin our summer routine.  I’m very excited.  I won’t be 30 minutes late to work for 3 months.  They can go to bed a little later since they can take naps.  That means I get more time in warm weather to hang out with them.  I’m stoked. 

Last Day of School

Woohoo!!  It’s almost over!  This mom is sooo excited.

Matt did good last night.  He was such a ham.  He had us laughing all evening.  He woke up dragging again for a bit this morning but finally woke up enough to get his butt in gear. 

My hubby & I had this great plan that he would pick up Rachel from school and take her to his moms.  Then I would pick up Matt from school and take him to his daycare.  We know if Rachel gets dropped off and Matt doesn’t he’ll have a cow.  Well, hubby’s work truck broke down so I guess Matt will be having a cow. 

Still Trying

Matt didn’t do much better this morning.  He was not impressed with the idea of getting up and going to school. 

I repeated, “Matt, you need to get up this morning,” about 20 times.  I think my hubby finally got sick of hearing me and told him to get out of bed.  It only takes him once.  Lucky!!  Matt lumbered down the hall to the bathroom but he was in no hurry to get on the toilet.  I had to pull his pants down and sit him there because he wasn’t making a move to do it himself.  He was being so pokey that my hubby managed to get a shower and I got my hair done in the time it took him to finally use the restroom. 

He did get dressed in a decent amount of time but when I sent him off to get his socks and shoes on, he vanished.  Rachel ratted him out.  He went back to bed!!  I got him back out of bed and about 20 minutes later he finally had his socks and shoes on.  Luckily for me, he had no problems with getting his coat and backpack on and getting on the bus.

He has field day at the middle school today so I’m hoping that he will come home in a much more energized mood.   

My Babies are Home

Matt & Rachel are back from their weekend with their fathers families.  Have you ever not seen your child in a day or two and can swear they grew like 3 inches and gained like 10 pounds.  I felt like that when I saw Rachel.  She is getting to be so grown up.  It’s really stressing out the mom.  She is my baby.  She is not allowed to grow up…ever.  When I tell her that she just giggles and pretty much tells me to get over it.  She transitioned back pretty well but Matt had a harder time.

Matt was pretty quiet until right before bedtime.  He didn’t say a whole lot to anyone and kind of just hung in his room.  He kept staring at us and the fan but didn’t come out.  We had to go to my in-laws for a BBQ at 6 and he opened up a little there but they even noticed he wasn’t as chatty as usual.  After we got back home I finally cornered him and tickled him to death.  That got him going again.  I’m not used to not hearing the same sentence over and over.  I had to do something to get him back in the swing of things.

We have two days left of school.  It’ll be a difficult week for everyone.  Our routines will all change midweek which is never fun for anyone.  It’s only Monday and I’m already ready for the weekend.   

Running for Inclusion

A mom on the fragile X listserv just shared this story about her son.  It’s really good.

* * *

From EP Global Communications

Running For Inclusion

Posted in: Top Story

By Rita Furst Seifert
May 15, 2007 – 8:37:21 AM

 

When my son Darren was in elementary school, a mother of a child in special education told me the best way to make any child feel part of high school was to participate in extra-curricular activities. At the time, I did not know how Darren could do that. He has fragile X syndrome, the most common inherited cause of mental impairment affecting approximately 1 in 4,000 males and 1 in 6,000 females. Darren loved sports, but his gross motor and eye-hand coordination prevented him from being on a regular team. His math and communication skills eliminated being a team manager. He had no interest in acting, and his fine-motor skills would not be suitable for painting scenery. Extra-curricular activities did not seem realistic for my son.

Starting at age five Darren was involved in sports. Occasionally, he was in a mainstream development program, but usually he participated in a special needs recreation program. He had neither the motor skills nor the focus to play in typical team sports such as soccer and baseball.

Running For Inclusion May 2007

My husband Alan, an avid runner, started to think about how Darren could engage in physical activity while he was growing up and have a way to stay in shape as he became an adult. Darren wasn’t likely to join an adult soccer or softball team because of his motor skills. He wasn’t someone who would call up a friend or go to the park for a pick-up basketball game.

Alan decided Darren should try running. It could be done anywhere, and the only equipment you need is a good pair of running shoes. In the beginning regular sneakers would suffice. You didn’t need to have friends or arrange a special time. You didn’t need to be fast. You just had to do it. And if you ran regularly, you would improve.

Alan started Darren slowly. First, run one block and rest, then another block, then two blocks, etc. Without fail, Darren would say, “I’m too tired.” But Alan would cajole, encourage, demand, and use any technique he could to get Darren to run. Over the course of several months, Darren kept making steady progress to the point that he could run three miles. Even though he would still say he was tired and lobby for a shorter run, he clearly enjoyed it. Alan, who previously valued the solitary aspect of his running, now looked forward to Darren’s companionship.

Alan asked Darren if he wanted to run in the Somerset Race, an 8K (4.8 miles) race to benefit the local elementary school that his brother Jed attended. Alan had run in the race since its inception, and I had always volunteered as a race marshal. Darren said yes, and they both had a new goal.

Darren still had gross motor issues. As a runner (and walker) he moved from side-to-side, and his feet toed out. He was not the smoothest or fastest runner, but run he did. Occasionally, Alan would get unsolicited advice from a stranger:  “Tell your son, he’d run better if he kept his feet straight.” Duh, he would, if he could. Mostly Darren got accolades because he ran longer distances than most and people in the neighborhood would recognize him from running with his father. The resulting benefits for Darren’s self esteem and confidence were fantastic.

We had a friend who had introduced Alan to his first running race years before. The friend’s daughter was an excellent long-distance runner on her high school cross-country team. Our friend told us that cross-country runners were very nice and typically anyone could be on the team as long as you went to practice.

Darren was beginning regular high school and would be in special education classes. Before school started, Alan telephoned the cross-country coach, told him about Darren and asked if Darren could be on the team. The coach’s only concern was about safety since the team practiced running on neighborhood streets. Darren was careful crossing streets, and so his school running career began.

The high school cross-country runners were super nice. Darren stayed after school every day for practice. I had to pick him up after practice, but it was worth it. He loved cross-country. He loved running and being around the other students. He was not good at conversation one-on-one, but he enjoyed being in social groups. He was in all the races. At the time, he had no competitive streak–he would sometimes slow down and wave people on–but he seemed to manage never to come in last. And he was tireless. At the end-of-season dinner, they gave out humorous awards. Darren’s was “the energizer bunny.”

Darren continued on to the indoor track team and then the outdoor track team. He loved them all, but he was most and foremost a long-distance runner. (He once ran in a half-marathon). He lettered in cross-country and proudly wore his Wootton High School jacket with the big W. Since he practiced year-round, he was in excellent physical shape. He also got to know other athletes since he would see them after school at practices. Darren always had a smile on his face (pre and post running), and he would always give people he knew big greetings. His signature hello was “What’s up with you?”

Running allowed Darren to keep in shape, feel good about himself, and feel truly a part of his high school. Now many years post high school, we still run into former students who remember Darren and stop to greet him.

Darren continues to run with his Dad, and in the spring, runs with Special Olympics. His events are the 1500m, 3000m and 4X400m relay. For the first time in his life, he has become competitive–he wants to win. When someone beat him at the last moment one year, he was determined the following year not to let that fellow do it again. Darren was euphoric when he won the gold medal. Darren participates in Special Olympics all year, kayaking in summer, soccer in fall, and cross-country skiing in winter.

This July he went to the first Special Olympics USA National Games in Ames, Iowa on the Team Maryland track team. Athletes and coaches from every state came together for an extraordinary experience and sense of community.

Darren and Alan still run races together. I cheer at the finish line.

______________________

Rita Furst Seifert is a Senior Manager at The Lewin Group, a national health care and human services consulting firm. She has been an advocate for children with disabilities and their parents for over 25 years. She currently is active in the Maryland Fragile X Resource Group and a board member of the Learning Disabilities Association of Montgomery County, MD.
 

© Copyright 2007 by EP Global Communications

Fragile X Mouse

Since I don’t have my babies this weekend I’m pretty much useless.  Plus, I’m trying to get over this strep.  But I found this interesting article on fragile x research.  I have one question on it though.  What would a fragile X mouse look like??

* * *

This article can be found here.

Putting the Hex on Fragile X

By Phil Berardelli
ScienceNOW Daily News
24 May 2007

A stimulating environment can undo the physiological effects of mental retardation in laboratory mice, researchers have found. The discovery might pave the way toward similar therapy for children afflicted with a similar kind of retardation called Fragile X syndrome, although the parallels with the human condition aren’t perfect.

Fragile X is one of the most common causes of mental retardation, generated by the inheritance of a defective gene called fmr1. Affecting about one in 4000 people, its manifestations include diminished abilities to learn and memorize, as well as anxiety in the presence of strangers and an overall stressful disposition. In the new experiments, researchers from VU University in Amsterdam, the Netherlands, used lab mice containing the deactivated fmr1 gene. These mice also have learning deficiencies.

First, the scientists set out to identify the underlying neurological defect in the mice. To do so, they analyzed mouse nerve cells from the prefrontal cortex–an important part of the brain for learning and memory. These cells showed a diminished capacity to store information for more than a few minutes, a trait known in normal individuals as long-term potentiation. They found that the defect lengthens a part of neurons called the dendritic spine, which makes it more difficult for the cells to transfer calcium ions, a critical ability for maintaining strong electrochemical signals between neurons.

After 2 months, they detected long-term potentiation in the prefrontal cortex cells. In other words, although Fragile X syndrome tends to inhibit brain cells from storing information, the research shows that exposing Fragile X mice to stimulating environments improves the communication between the nerve cells, says neuroscientist and co-author Huib Mansvelder. He says the new findings, reported in today’s issue of the journal Neuron, “provide strong scientific support” to investigate in Fragile X patients “what the best way would be to challenge these patients and stimulate brain activity.” He adds that the approach might even benefit victims of other forms of learning deficiencies as well.

Cell biologist William Greenough of the University of Illinois in Urbana-Champaign remains somewhat skeptical. Although he thinks the study provides a “plausible mechanism” for overcoming the effects of Fragile X syndrome in mice, “when it comes to enriching the environment in a human home, I think many parents have tried to provide stimulation and the effects have been much less dramatic,” he says.