Morning All

I am here for some help really, Grayson my 15 month old son seems to still not have a diagnosis, he has finally had his LP, Bloods and seen s genetist and they all come up negative. We saw his doctor this week and she says Grayson's GDD is worse than they first thought, although he is showing some signs of development they are very minimal and although she can not give a definitive answer (as they just don't know) she is unsure if Grayson will ever walk or talk.
She has said its all now about getting Grayson to independence, this is hard but I accept it and no that my son is who he is. Now its the trouble of making my family understand.

I know I am very fortunate cause my family all help a great deal and want to have Grayson all the time, I use to feel comfortable with my Mom having Gray but I am becoming increasingly worse at wanting anyone to have him (hard when I work 2 days a week) my family just don't listen. They love their Grandchild but I don't think they except who he is, my Mom is always trying to get me to put Grayson in a walker (he can't even sit) and I have told her the doctor has now stated Grayson is at high risk of dislocated joints or problems with his hips. I know they think if he is pushed harder he will just start doing it but I know this not to be true.

So my question is any suggestions on how to get my family to listen ? I thought about taking them to the doctor but she can't say exactly as like she says some Children amaze her still and I know this is all my Mom will hear. I love her optimism but I want her to be realistic it gets me angry.

Sorry for the rant just one of those days.

Kara

Grandparents try and be positive and i think they do this in order to try and protect us and have us remain strong.
It could also be that they are from an era where special needs was not such a big thing in terms of knowledge and therefore think to themselves things will be fine.
I dont know what to advise in terms of stopping her doing stuff as it could offend but at the same point you have to think of Graysons bones
Personally i put my foot down with my mother so its not a concern so i cannot really advise.
Im sure others here have the same sort of issues

Hi, I had a nightmare with my parents as they were convinced we were reading too much into thomas's little quirks and that we were almost looking for things wrong with him. They just couldn't see what was in front of them. We had some furious rows over it I can tell you!!

From the start we have collected any reports and letters from hospital appointments and info sheets from the national autistic society and local disability services. My hubby and I sat my parents down and said in no uncertain terms LOOKthis is what is happening and you HAVE to accept it. I also told them how let down and unsuported I felt. Now they have got it, and they do as much as they can to support us whether it is having Thomas for a few hours so we can go out or helping us out with special stuff for him. They are going to brave a whole weekend so me and Kev can go away for some RnR

Hi Kara, reading your post i felt as though i wrote it!! I can completely relate, our son Max has a diagnosis of 2 chromosome abnormalities (a deletion & an extra bit) however both are extremely rare and no-one with the same 2 together can be found. So, when we see the geneticist or neurologist we never really get any answers, it's just a waiting game. Max is developing, in his own way, at his own pace. He got glasses at 20 months and hearing aids at 21 month and these have made a world of difference.
We have exactly the same problem of getting family to understand, because he understands some things that are said to him they sometimes say really hurtful and ignorant things like 'well there is intelligence coz he understands that'. It drives me mad, I haven't really got any brilliant advice (sorry!) but i wanted to let you know that you're not on your own.
To be honest i've stopped telling family as much, i've found that short answers are the only way. I don't go into detail about every appointment we have (like i used to). If they want to know something they ask and i tell them and if they make unrealistic suggestions i simply say, 'hhhmmm, maybe' and leave it at that.

I know how hard it is leaving your son, We've never really left him with anyone, even the grandparents (due to him having a cleft palate mainly - feeding issues) but if you can do it I think it's probably best you do, even if only for an hour. Max is 2 in just over a week, i know it sounds daft but i keep thinking 'it's only a year till nursery' and it frightens me coz he's not used to being away from me or his dad.

Sorry to go on a bit

Sally x
(This post was last modified: 04-11-2010 01:22 PM by sclarke19.)

hi, i too have unsupportive parents, they just don't seem to take notice of anything i say. i think it their way of dealing with the problem. My 8 year old had ADHD, he's always hyperactive and can't sit still for longer than 5 minutes. they make remarks like your full of beans today! sit still have you got ants in your pants! he now replies "NO i've got ADHD" it soon stops them in their tracks.
your not alone in this, lots of us are going through the same thing, it's nice to come here for a rant!