I am quite new to Mumsnet...

[rivers]

and have not often posted on this board but I just really needed to vent and I guessed you would understand most! My DD was born at 26 weeks and has many physical problems which mean she cannot talk at all and due to a food phobia che is completely tube fed despite all these difficulties she is meeting all her other milestones. She is now 3 1/2yrs old and I was hoping I had finally come to terms with everything but for the last few weeks I have been feeling so fed up. She has just started nursery which has gone really well but we are now in the process of statementing for her to attend a miainstream school in Sep.05 and I think all the forms I have been filling in has really brought it home to me how many difficulties she faces and I just feel so down that I cannot change that for her or protect her from that. I really am sorry for such a miserable post but have just spent the last hour filling out forms re. her feeding and have realised how little progress we have made in that area in the last three years! Thank you very much for reading this!

rivers... to hear this but some wise mumsnetter will come up with some ideas soon. XXX

Relied to this because watched a programme about premature babies. It stated that at this age learning difficulties are common. How good is her understanding and speaking ?

Unfotunately she cannot speak at all as she has a tracheostomy but she understands every thing you say and uses Makaton to communicate.

What is a makaton ?

Forgot to add - sorry to sound like an ignoramous !

its a form of sign langyage.

sorry to hear you are feeling so low, Iknow exactly how you feel, we were there 6m ago with ds2, who was statemented aged 3.

We know it's all for the best etc,and he will get more help if statemented but it doesn't help you feeling shit does it? And worrying like hell for the future

she sounds like a very brave and delightful child. you too are very brave to face all these difficulties. hope you feel better after getting it off your chest. good luck with the school xxx

Makaton is a very basic sign language, she uses that and pictures to communicate.

to hear that you feel low. >

Feel empathy with your situation. My 14 month old has developmental delay and he's undergoing loads of tests etc - its a horribly worrying time. Sometimes things get on top of me (I feel like I'm silently screaming) and its hard to focus on the positive. But I'm not superhuman and neither are you. Tbh it sounds like you are having one of these lows - dont be tough on yourself as it sounds like you've been coping so well so far.

They are such a wise bunch on this board that I'm sure some really good support will come your way (smile).

I don't know if anyone will be able to answer this but do you think there ever comes atime where you are truely at peace with how your child is and things don't effect you as much? Sorry to go on but I really am shocked at how I am feeling so like I used to in the early days.

Rivers - I found a previous thread which might prove helpful. Its called `when do you start accepting it all?????' and its in the archived special needs board. Sorry cant do fancy links (computer ignoramus) - Can anyone help do it for me/Rivers please?

there is a time when you will be more able to accept the things going on, but there are also times when it all hits you like a ton of bricks. Hopefully we get to the stage where the ton of bricks are outweighed by the accepting

The thread Merlot refers to is here

Thanks Roisin

Thank you so much everyone for posting and for doing the link for the other thread. I'm sure you know but it really does help to know that other people feel the same as you. I just wished I had actually posted on this board sooner! Thank you again.

Hi Socci - Form filling is awful isn't it! I think for me I spend so much time trying to make our lives as normal as possible and treat my DD as any other child but when you have to fill in the forms I find it makes me face every problem she faces. I hope things get easier for you, DLA forms have to be the worse!

hi Rivers i am filling out those dreadful dla forms too and i understand how you feel i also feel very sad its hard to look and compare your child with other kids examine their weaknesses and not get affected .Statmenting is also very stressfull but hte benifits to your dds live will make this worthwhile .We all have periods of feeling low so its good to vent and to know that you are not alone in how you feel.i hope you feel better soon.

Totally understand how you feel, rivers. I came on this board for the first time a couple of months ago feeling really overwhelmed by it all- hit by a 'ton of bricks' as lou says! (my dd, who's nearly 4, has autism). I find it really does go up and down. You'll get lots of support here

I think the hardest times are transition times rivers so no wonder you are feeling down. THese are the times when choices have to be made (and you realise how few choices you have and just what the things are you're choosing between). I haven't had a major transition for 3 years when DS started special school but I had a terrible time recently when the school moved from one location to another which is trivial and actually a very good thing. Of course you know it is normal to feel like this but that doesn't help much does it? Just know that things will get sorted and settle down. I do find that getting to know other parents with children with Sn helps a lot, as does doing completely non-SN things, a good balance between the two makes all the difference. Have you met any other local parents with children wtih special needs or disabilities, even if they're not the same as your DD?

Yes, bloody nightmare the transition bits. Just about to go through one myself, rivers, as DD heads for school...
Just read 'that' thread about accepting it all. ...
Very emotional. Felt nearly everything expressed on it.

Rivers, I can really understand the emotions that you are going through. MN is graet for that, you can share all the highs and lows and there is always someone the who can identify with you.
My dd is just 3 and has DS. She attends SN nursery twice a week and has just started mainstream nursery 1 session, increasing to 3 in Jan. It has been a very emotional time for us. Firstly making sure you have the right setting in the first place,I have felt so alone in making the choices. Just have to rely on your gut instinct and keep your fingers crossed. We haven't started the statementing process yet, still have that to look forward too. Just like completing the DLA forms, or assessments, check-ups.You are constantly concentrating on the negative.
Will be back, someone trying to get through on the line!!!!

rivers, no advice but lots of

Sorry,,,I'm back!
What I was trying to say was that so much of our time is concentrating on what dd can't do. She isn't talking much either, it's a constant reminder that she doesn't walk very well, other children the same age or younger have often said, I used to use a buggy when I was a baby!
I am so sorry for all the waffle but I suppose what I am trying to say that all that emphasis on the negatives is bound to get you down. I find I throw myself wholeheartedly into "working with dd" and then I just mentally collapse, I switch off, get really down, and then get motivated and start all over again.
It may take a few steps back and to look at your dd as an outsider almost, look at what she has achieved, how she adapts, her signing and most important of all the love you have for her.
I'm sorry that I haven't helped much, I have been on a "down" too, hopefully I am just about to get spurred on to a bout of motivation!
Sending you hugs and strength to help you through.