invisble disabilities arent they just

[Fio2]

i mean how long before they even see? its no good going on about strangers, what about family. My head is about to explode. My SIl and even my own bloody Mother has said that dd is ok, not much to worry about today. Please tell me its not just mine that do this

I know SIL actions though have an ulterior motive but anyhow

Yesterday evening I was persuaded to join a slimming world club with my mum. It was ok until the lady started explaining that you could feed the rest of the family on the same food so that you didn't have to cook different meals and I gave a hollow laugh. She started naming different veg etc and I was saying "No, he won't eat that" and wishing I'd kept my mouth shut as it made me sound like a BAD MOTHER who doesn't encourage her children to eat veg. Anyway, my mum came to my 'rescue' by saying that he is 'a little bit autistic'. She has said this before and I have just gritted my teeth but this time I said "How can you say that? He's five years old, can't speak a word and wears nappies" (there was more but you get my drift). Her reply was "Oh but he's so happy!"

So there you have it, my mum's understanding of autism despite living next door for the first 4.5 years of ds's life. (I have to admit she does love him to bits though)

Hi Jenkins

I think the stuff you need is called Dycem or Dicem (can't remember how to spell it). They sell it in our local mobility shop. You can cut it up and put it on any surfaces (great for holding plates onto tables, or paper onto writing slopes) - worth a try on the swing as well, I don't think it's too expensive.

Fio, thanks so much for offering, but I've already suggested to my mum that I could buy a baby seat for it. She looked embarrassed and then mumbled something about the 3 year old next door being able to use a swing properly. I don't think I'll be going round there for a while.

DS doesn't have a diagnosis yet. We are waiting to see a dev. ped. but I think it's just delayed development. His head is only slightly bigger than average but looks a lot bigger because it is very flat at the back, his face is very wide and his forehead sticks out further than his nose. He was born like this but his consultant thinks it would have got better if he had sat unsupported earlier when he was a baby, instead of laying in the same position all the time.

Littlefish - I think I know what you mean, and I might have some in the loft.

Another job for DP then

my daughters head used to be really flat at the back when she was a baby, this was one of my concerns too, infact her head most probably flagged everything else up iykwim. Is he three then?

coppertop- in our family, while the bad stuff is my fault, the good stuff is their genes (via whichever relative I'm talking to)

Fio - DS is 3.5 yr's. His head wasn't really flat at the back when he was born, but it was a really odd shape. Pointed at the top and kind of twisted at the back. I didn't worry about it that much until he was about 2, when it looked much worse. His GP and health visitor were not at all concerned about it, but I pushed to have him seen at a craniofacial unit to rule out any skull fusion. If I'm honest I knew that there wasn't any fusion but I was desperate to speak to a professional about it without having them roll their eyes at me. It was the best thing I could have done because he was seen by a multi-disciplinary team who straight away pointed out his delayed development. I had been feeling really terrible about the shape of his head and his GP had been less than helpful. She once told me that only neglected babies develop plagio.

How old is your DD now and does she have microcephaly?

Tallulah - my mum puts all of DS good points down to our side of the family, but any of the less desirable things are from DP's side. She often say's things like 'well, they are a funny lot, aren't they?'. DP would hit the roof if he heard some of the things she has said.

............and my mum once said that the reason i was so depressed was BECAUSE of the way my boys are!

Just like she blamed her depression on mw as i was growing up.

Hello MrsF - haven't seen u around in a while!

Hi!!! Hope u r ok!

yes jenkins, she does have microcephaly and is 5 1/2 (cant belive she is that old) It is really weird that we as Mothers always 'see' it first

Sorry, I am really tired and not sure I am picking up on this right, but does a flat head go hand in hand with microcephaly?

My dd had a "hidden disability". For 2 years she had an in-dwelling supra-pubic catheter and had to drain her bladder through it instead of weeing normally. Whenever we were out, we would use the disabled toilets. On more than one occasion we were subjected to people in wheelchairs banging on the door to insist we used the normal loos as my dd wasn't disabled. Oh, the times I have ranted to people that not every disability can be seen. I once was so cross I pulled dd's trousers down at the front to reveal the catheter tube coming out of her stomach and said, "Is that disabled enough for you?"

Pages, no

QueenEagle I have found some older disabled people not very tolerant when it comes to children with a "hidden" disability. You should seem the humphs we get sometimes at our special swimming session for disabled people, when DS does a lot of splashing!

bit like us davros when leigh goes in the disabled swing...he had never gone on a swing till we tried the special 'chair' type disabled swing...and he loves it...i have occaisionally explained that he has problems with his balance etc....but the eyes glaze over- so i don't say more.

Thanks Fio2, got the wrong end of the stick then!