Sunday, November 23, 2008

An evening with Fragile friends

So our local FX group gathered at our house last night. We had 4 families - 8 adults - 9 kids(all between the ages of 3 and 9) - 3 girls - all full mutation, and 6 boys, 4 with the full mutation. It is good to gather with friends who understand, though - friends who don't give you odd looks when you have to excuse yourself to change your 5 yr old's pull-ups. It was great fun... the kids trashed the playroom, but that's what playrooms are for right? I think in my desire to clean up earlier in the day, I stressed out Lindsey a bit too much, because she came downstairs crying because 'we worked so hard and now it's all ruined!' Note to self...next time don't bother cleaning the kids' rooms.
Anyway, the big issue of the moment is one of our local school systems has decided to end their preschool program. They had been widely praised for the program, which is comprised of 50% special needs and 50% typically developing kids. The excuse, as I understand it, is that there is a federal mandate requiring then to educate children in their natural environment (home or daycare), also they are saying that they are required to have a 70/30 preschool ratio by the federal mandate, which they don't have the space to do. But they are really just cutting costs. They refuse to offer my friend's 9 year old services, even though she has a fx diagnosis and she did miserably on her standardized testing. Also her 3 year old brother was not admitted to the preschool program because he was doing too well. They offered him 30 minutes a month of OT, and no speech. Seriously, has anybody ever heard of a 3 year old boy with FX who shouldn't have speech therapy? And the reason he is 'doing so well' is because his parents are shelling out a fortune to put him in a private program. So I guess they have to take him out, put him in regular daycare, and wait for him to lose ground before they will do anything for him? Yeah, not gonna happen.
Anyway... school system beauracracies can be such fun, eh? But we had a good time swapping stories and laughing together, and I am thankful beyond words for friends who 'get it'.
And now I have to call my wonderful friends and warn them because overnight I began feeling ill, and now it seems that hubby and I have a stomach virus. How much are they going to love us if we gave them a stomach virus for Thanksgiving? Yeah. Fabulous.
Anyway, I guess we have an explanation for the random hurling we experienced from J a few days ago. Still it was just that one time and then he was fine again, so I didn't suspect a stomach virus. Now I need a Band-aid for my tummy.

8 comments:

AccessDNA said...

Thanks so much for sharing your experiences, and bringing attention to Fragile X.

AccessDNA.com

Jen said...

I would be very upset if they dropped the pre-school program. I already believe that not enough is offered.

Holly's Mom said...

I am sorry to hear you are having such Issues with the School System, I am so greatful of the early intervention program through our regional center, that I am terrified of Holly turning 3 and switching / loosing services.

FXSmom said...

That is awful! Preschool for our kiddos is so necessary. :(

Lorie said...

That school stuff is very very very frustrating. This is the first time I've visited your blog, but I love the story at the bottom of your page....I think it describes what having a special child is like in a real way. If you don't mind, I would like to post that on my blog and link back to your blog. If you do mind, then I certainly won't do that.

Leanne said...

Lorie, I don't mind at all. Welcome to Holland is a well-known essay and not at all mine, so please be sure to credit Emily Perl Kingsley for her work!

Thanks for visiting - I've been to your blog before as well! :)

Lorie said...

The more I thought about it...I think I have heard that essay read at a training for working with special needs children (that I attended as a teacher before I had children) but I never could remember what it was titled or who wrote it. I will post it on my blog and link back to you. I saw that your brother, Scott. was just recently diagnosed (in the last few years). I have been wondering about how Fragile X will affect other members of my immediate family and their children...my cousins. Before my son, nobody in our family had ever been diagnosed; so now we know that he and I are both carriers.

Leanne said...

Yes, our son was the first diagnosis in our family as well. Now we know my mom is a carrier, and my brother and I, as well as both of my kids have the full mutation. Lindsey and I have the shyness and anxiety typical of girls, along with attention issues for her. Scott is severely affected and lives with my parents, but was misdiagnosed as having brain damage due to oxygen loss.

The family tree stuff is interesting - I've learned more about genetics lately than I ever thought I'd have to know.