Hi, newbie.

[AbbiS]

Does anyone else have a child with Duchenne Muscular Dystrophy?

Hi AbbiS.
Welcome to the SN board. My DD (17) doesn't have MD (has rare chromosone disorder ) but my DH works with adults with a various types of MD (some of them DMD).
It is a pain when you find things like holiday clubs but can't access them due to lack of transport. Any chance you could have driving lessons - I'm sure you will find it invaluable in the future, especially when your DS is no longer very mobile. I don't know how I would have got through life with DD without driving and having a car under the Motability scheme. We live in a rural area and the only holiday clubs are 16 miles away, with no transport provided.

Yes, a lot of the DMD boys seem very popular with the ladies! Everyone seems to think my ds is very cute, so hopefully he'll have the girls fighting over him at school as he gets older!
He is still attending a MS infant school and up until recently I was beginning to think we would have to look into SN schools, but by some miracle, he got a new LSA (the first one gradually cut her hours until she was hardly ever there) and he was like a different child at school (still a monkey at home)! I think we were up the school for assembly 4 times last term, to watch him receive various certificates. He also got a post card sent in the post from his teacher with a Star Award. Before then I had been up to assembly ONCE in 2-3 years! The change has been fantastic and definitely down to the new LSA, she was signed off sick for a week and he went back to how he was before.

I am in touch with DFSG, the monthly Eddy's group meeting is held not too far from me but I still haven't managed to go in nearly 4 years. Too shy and the thought of getting the train on my own freaks me out. They are meeting in the summer holidays though so might drag dh a long with me and the kids.

Hi bigbluebus, I will be learning to drive as soon as we can afford it, dh wants me to do one of those intensive courses. Which I think is the best route for me as I have a seriously short attention span, the quicker I get it all done the better. We do have a motability car, dh will buy himself a new car once I pass. We don't live in a rural area as such, but there is absolutely nothing for the kids to do in the local area. I'm also hoping once I learn to drive I can get Ryan's care transferred to GOSH.

Abbis, you have put your DS's name in the last post. Don't know if you are happy with that, if not you can report your own post and ask MN to delete it. I'd save it first, if so, as they delete the whole post, then you can repost it edited.

Abbi - get yourself along to a DFSG event, you wont regret it & they really dont bite. They really are a very positive happy supportive bunch of people & there always seems to be alcohol involved

I'm so dense, it's ok though. I just hadn't seen anyone use their child's name on a post so didn't think it was the done thing on this site. Thanks for letting me know. How come there is no edit function on here?

I will get round to it one day, I am in contact with a couple of people who work for DFSG and they are both lovely ladies so I know I won't get mauled or anything ;) Oh alcohol, how I miss thee!

We don't tend to use DC's names to keep it at least slightly confidential which gives you the opportunity to really speak the truth. The posts last forever and anyone can read them so if you are concerned you may have 'outed' yourself and your DS you can get it deleted.

Cool, I'm not worried about anyone knowing its me - I tend not to post really personal info :)

Hang around...