Is anyone else starting out on the road to a diagnosis? Fancy holding hands on the bumpy path?

[hazeyjane]

Ds (10 months) had 2 appointments in one today, a medical assessment and developmental assessment. He was referred at 7 months to the community paeds, due to developmental delays.

We are now booked in for some blood tests next week, and some physio, and have been referred to a SALT, for portage and to a special needs playgroup.

It is all so overwhelming, on the one hand I feel so much better, after months of waiting that I am able to do something. On the other hand I feel as though everyone is still scratching their heads over ds, and I just want someone to say, 'ah well Mrs Hazeyjane, your son has -- thats why he can't do these things, (well I don't, obviously I'd rather they said, 'ds will catch up and there is no issue, now be off with you'!)

I know that this is going to be a long process, is anyone else just starting out, or a little further down the road, for handholding, venting and advice?

By the way this is the seat that our OT recommended, he still uses it now, not as a high chair but just as somewhere to sit and play, have a snack etc. It was especially good at that still wobbly sitting phase that I think your ds is at.

Congratulations to your friend.

I thought I had all the baby gear necessary before having ds, and i am amazed at how many things we have ended up buying on ebay, anything to help us or ds along a little bit - the only thing is how hit and miss it all is, mumsnet is great for working out what are the best options. My latest purchases are a honey bear drinks bottle (that has taught ds how to drink through a straw - very good for oro motor skills), a cradler for his head in the pushchair/carseat (ds tends to let his head slump down to the right, which physio thought may cause stiffness) and a chewigem necklace (for me to wear and ds to chew - again with the oro motor skills).

The bumbo didn't last long with us - because ds is so, mmmm cushioned(?) that he got stuck in it, it was a two man operation to pull him out!

I see a boy in town who was born on the same day as ds - we were on the same ward. At the beginning he was twice the size of ds (lots of weight issues in the early days), and now when we see him he is running alongside his mum, chatting and looking like such a grown up little boy,it kills me. What makes it worse is that the mum always tries to avoid my eyes, I can see that she just doesn't know what to say.

I have just done some extra quick stress baking to try and calm down before ds's Team Around Child meeting tomorrow. Me and dd2 (off school ill with inflamed sinuses) whipped up a couple of banana cakes, and a bolognaise!

Hi everyone

I've felt really sad reading the last few posts about the struggle to take up places and stupid conditions imposed. It's made me realise that really I've been quite lucky as apart from the long long looonnngg waiting list for SALT and the fact that no one would recognise that DS1 was not just a late developer until he was two, we've been quite lucky. In fact our CDC (sn nursery) positively encourages that children maintain a place at a mainstream setting in addition.

We had a bumbo (iPhone wants to change that to bimbo - ha, lucky I spotted that potential clanger!), it was great and skinny mini DS1 was happy sitting it until he was well over 1. DS2 hated it from the word go, chunky and never stops moving.

Our latest recommend from speech therapist is chewy tubes, they're v expensive but seem to be working when we use them to replace an inappropriate it that DS1 is chewy "don't chew that, chew this instead".

I made my first school visit last week,even though I dont have to make a decision until jan next year I'm panicking that I'll make the wrong one. Our village school is small, max 21 in a class and has an outstanding ofsted, they ate Napoli for him to do 2 years in reception if need be. 15 mins away is a mainstream school with an ARB (area resource base) for children with special needs; this is kind of a best of both worlds where literacy/numeracy are done in a v v small ARB class and all other subjects in the mainstream class. I'm just paranoid about making the wrong choice for him.

Ate Napoli - ?!!! Are happy it should have read. Think I better go to bed.

Hi all, still pregnant so a bit bored at home now which is proving a good thing for getting stuff sorted for DD (probably the professionals I am chasing up would not agree!)

The schools chat is interesting, wish this thread was around a year ago. I don't know how far you are with statements etc if anywhere but my tip would be do it asap and try and have stuff in it that could pave the way for a special school placement if necessary. Its easier to get it before school because once they start its a case of proving that thye can't cope without xyz rather then before which was just stating needs.

I went with mainstream with support for DD and am still fighting to increase the hours of support she gets-luckily she is at a lovely village school (I say luckily but we moved here because of the school!) and they are really supportive about the extent of her needs. Only thing is I feel really that SS may have been better for her if I could have found the right place and wish I had given more thought to this before getting her settled in here. I think the split placement and support from local ss whilst in mainstream sounds great-its what I am probably going to ask for. Our mainstream is lovely but the expertise of the ss I recently visited has been from years of working with children like DD so they offered to come and see her at her mainstream to offer advice.

Anyway, cerebra lady should be here soon to do DLA forms, joy!

The childrens center has managed to annoy me to such a degree that I am seriously considering not taking up the place. I put my foot down about not taking D out of a nursery that is performing brilliantly and were she is well settled and had a snotty phonecall about how the chidlrens centre is not respite and they would expect to be filled in about her various therapies etc. To which I replied well of course, I fully expect everything to be co-ordinated across. Then they have come up with a crazy settling in schedule where she has to come in 5 days a week initially even tho they are offering a max of 2 days. Ive said ok. But it just seems like they are making it as hard as possible. The whole things seems to be predicated on the assumption that either I dont work or that I do some minimal level employment.
At the moment I dont like them and that makes me extremely wary. But maybe a deep breath and wait and see how this pans out. OUr private nursery has then done some digging and found out from another parent rhat the center is supposed to be pretty good....arrgh! I am really surprised at how high handed they are. They tell me their priorities etc as tho this is all in my and Ds best interests when I suspect its actually in their own interests but all dressed up in doublespeak.

Just in tears at your blog mavis. I am struggling too to gte back into consultancy with everything so up in the air. Its not just finding the time but also getting my head right again - and making the money square up. Seems like an impossible circle to square when we are just trying to keep our heads above water. Sorry - low day....

Hi all,

Usedto, hope you haven't been too hot over the last couple of weeks. I remember being pregnant during hot summers was v unpleasant. Thanks for the statement advice, hopefully DS1s will be sorted next year as it's one of the functions of his CDC placement. If he didn't get a place I already had the Early Years SENCO at the LA primed to start it in September with his mainstream nursery. It's good to hear your experience of mainstream though and it's made me seriously think the village school could be an option if I check out the possibility of an odd day at the ARB (yep, Burraton Mavis!) in the future.

Really this is an invaluable place to mull things over with people who "get it".

3 years ago today I got married. I had a great career, I was secretly and very happily pregnant, the sun was shining and all our friends and family where there cheering us on. Today its cold, my H is has a degenerative disease, my D has severe GDD, I have no work, we dont know how to cope, my family are as helpful as a sack of ferrets, our friends are probably bored of hearing about our crap and I am feeling sorry for myself.
I keep thinking what is the reason for this. Is it supposed to teach me something? And I come up with nothing - apart from mumsnet really isnt as crap as I thought it was!

Oh Firstimer, it's just shitty shitty luck/chance. Feel so sad for you, you need someone in RL to come and give you a massive hug and try to help you get everything sorted out. I really really hope things get easier x

Oh, FirstTimer, i am sorry you feel so down. It is so hard, when you find yourself in a place that you never expected to be. It is nothing you have done - life is just shit sometimes, and shit happens to the best and worst of us.

Have you spoken to anyone about it all?

After having ds, I found myself tumbling into a real pit, everything seemed to be going wrong, and I just felt as though I could not climb out. I have had some shit in my life, but have always had a very tough shell, but it felt as though my shell had gone, i really felt more vulnerable than i ever have. spoke to our gp about it all, and it felt very good to talk to her about it (we get on very well). I did end up taking antidepressants (which i know aren't for everyone - i swore i would never take them!), but only because i couldn't face counselling and just didn't have the energy to seek any self help (exercise etc). They have made a huge difference, and whilst the day to day stuff we have to deal with hasn't changed, I just feel i can face it a bit more without collapsing. I can feel my shell starting to grow back, a bit battered, but still there.

Please ignore me, if i am talking out of turn. And please keep coming on here to rant/moan/cry get angry or whatever you need.

I came on here this morning feeling rather sheepish and intending to apologise for being of embarrassing. So I was really moved to read your support. I thought I would find awkward silence all round. Thank you all so much.

To a great degree I identify with people on here. I also thought I had been through some tough times and that I was fairly tough. It has totally thrown me to have these problem I cant solve or find a way of living with..I also feel pretty unproductive a lot of the time. I think some of its shellshock but it makes me feel lazy not to be doing more to help us all when I do have free time etc but I just cant seem to hold it together and discipline myself to doing some work - god even just some more taxing reading -current affairs etc just to stay topical and in the know... I dont really know who I am any more and sometimes I am just so ashamed that I cant seem to do a better job.

My H and I were talking last night about how by the end of your 20s/early 30s you sort of think you've got life sussed. You hold down a job, have a mortgage, nice friends ect etc and you think 'yeah Ive finally cracked this life thing' And then in your late 30s/early 40s you realise you were just playing in the little league. The big stuff comes a decade later and people get ill and the bad stuff happens and you arent just affected by it - you are directly in the line of fire! And you start to realise the earlier stuff was just practise, this is the game - and its a total bastard.

I will go back onto st johns wort (which works on me) it gives me a bit of a buffer against my feelings. I think the celebratory days are hardest for me.

MissMavis - gadgets first (my favourite, next to baked goods!)

We use an Ikea Antilop high chair, at the beginning with the inflatable insert, which you can gradually deflate as they get more stable (we might still have the insert i could send you - if you decide to get one). I have a wooden babydan (a bit like a TrippTrapp) which we used for the girls, and which i will probably bring into use when ds gets older, but the antilop is great because

a) you can hose it down (stick it in the shower/bath)
b) it comes apart really easily so can be taken away easily
c) it has a removable tray, so can be pushed up to table if needed
d) it is stupidly cheap

The other option is to use the First Years booster which you've ordered, it comes with straps so you can strap it to a chair, and has a tray, it is really supportive.

I don't know about the baby activity centre, I think it would work in a very different way to a standing frame (which straightens them out - they are strapped across the bottom and back), whereas i assume the activity centre is similar to an immobile walker? if that is the case, then the areas of support are in all the wrong places (ie between the legs). It is really hard when they are at Orange's stage, we were very lucky to get the standing frame.The other thing we got, and this is a bit of an odd one, is a big square coffee table (you may already have one) which ds could stand against, I had to kneel up behind him, in order for him to stand and play, but eventually he got it himself, and now it is perfect for setting up with toys and cruising along, as it is the perfect height.

FirstTimer - if you can come anywhere and not be embarrassed, then this is surely the place! Just don't drown in the difficulty of it all, take whatever help you can get, take a bit of time (even a tiny bit) just for yourself everyday, don't panic about that feeling of losing yourself - you will come back.

Another vote for the antilop - we still use ours. We couldnt get an insert at the time and initially used rolled up towels round the back and sides. Bit messy but worked.
D spent a lot of time between the sofa and coffee table - sort of wedged but also pulled up by herself. Maybe you can wedge him into a corner with a coffee table - i guess if he's too floppy then this wont be comfortable tho

propped up sitting is good too - lots of cushions. A v shaped one is good if you have one of those from nursing