I knew there was problem but still feel devastated

[mummysaurus]

On friday ds (3.4) was seen by a paediatric dr who said "unfortunately" ds has developmental delay. We knew he was behind with his speech, motor skills, concentration etc and it was getting harder to tell myself he was just on the slow side of normal but it still feels a shock.

being told developmental delay doesn't really tell me much either - don't know the cause or what specifically is wrong.

I called the clinic today and they said he would get portage visits (soon i think) but there are delays of at least 12 months for his speech and occupational therapist appointments.

Feel so sad for my lovely ds and sorry for myself - I can't stop crying.

Not really sure where I from here?

I'm not surprised you feel knocked for six. You must have a million questions, not all of which will have answers. A 12 month delay in finding things out is the last thing you want to hear.

I've no experience and I know lots of mners will have useful and reassuring things to say.

Sorry you're feeling so sad.

oh your poor thing. It is a horrible shock to hear this sort of news - I had convinced myself DS was a few months behind with his speech at 3, then private SALT told me he was severely delayed.

who did you speak to at the clinic - was it paed or his secretary - just that if not, I wonder if it might be worth seeing if paed can put some pressure on SALT to see him quicker given he has already diagnosed a speech delay.

I know it's overwhelming, but there is a fair amount we can do as parents to help develop our kids' communication etc. Some good websites are:www.teachmetotalk.com (has video extracts), www.hanen.org. If the waiting lists are likely to stay so bad, it may be worth considering going privately for speech therapy or OT. In both cases if you go private, once you have a baseline assessment, you wouldn't absolutely need to see them that regularly (i.e. more than once every 3 months), as they can sort you out with appropriate exercises to do at home.

A few other things for you to consider at some point in near future:-
1.do you have SN Hvs in your area, they may be more help than a bogstandard HV
2.do you have any general SN parent support groups, they can be very helpful for talking to people in same position and in finding out how local system works

1. you could apply for DLA for him (if a child needs more care than a typical child his age you should be entitled to this).

first could you apply for dla this could enable you to do things privately instead of waiting around

also i wouldn't sit back and wait i would chase it up early intervention is always best

seek out any sn groups in your area they run different therapies and can also chase things for you

also see your gp who can send referral letters and maybe jump you up the ladder a bit

im sorry about how your feeling i felt like this too when we were in limbo and i waited the yr as was unsure what steps to take but have since learnt to fight for everything and not sit back and wait

ds was dx with ASD but had strong characteristics in his actions

with delay they should really bring any help what so ever to your attention sometimes a delay in development cannot be dx if not enough of something else is visible to do so

a;ll you can do is concentrate on getting him the extra help needed

sn groups run alot of things for children and parents so would be worth your while

also dla so you have option to seek private route if needed

and in meantime keep on and when you see some progress being made and your that step closer you will feel better

it is always a shock even when you know big hugs to you

x post with TC slightly there

Aww mummysaurus

It's a shock when someone starts saying it back to you isn't it?...no matter how long you have said the same things yourself.

It's normal to be in shock and to feel a bit of grief when you are confronted with this for real.

I would just focus on the portage visits for now...i'm sure they will help in giving you a clearer idea of where he is. He is still so little...it's great that he has such early intervention.

He is the same boy he ever was.
He will be ok

Sorry you are so upset. ( Hands over cup of tea)
Even though you know your child is developing at his own pace it is still horrible to hear it called delay. The trouble with developmental delay is not knwing why or what the future holds. However the label is usually the start of help and it does sound as if some support will be starting. It is a shame you have to wait so long for OT and SALT. Perhaps the portage worker can get you started. There are books to help guide how to work on language delay ( I know it is not as good as an expert salt helping you though)Perhaps others on here can suggest a suitable text? ( My son is now 9 and was Dx with GDD when he was around 3 - it seems a long time ago now!)

suggest make appt with gp to talk through what paed meant and if there is a cause that they are excluding.
otherwise sending hugs and supportxx

bookswise:-
It Takes Two to Talk by Ayola Manolson
You Make the Difference by Ayola Manolson
The New Language of Toys by Schwartz and Miller
Playing, Laughing and Learning with Children on the Autism Spectrum by Julia Moor NOT implying I think your child has ASD, it is a particularly nice book with good ideas for play with kids with language delay as it's by a parent to a kid with special needs so it's realistic and compassionate.

Thank you all so much for the messages of support and practical advice which i will work my way through. I know i'll feel better when I'm more informed and you've given me some starting points.

it's a new land with a new language and new places.

i know i have to fight - i have a wonderful sis age 30 with Downs and have seen the struggle my aged parents had/have for care for her. once i've got over shock i will roll up my sleeves just like they did.

troutpout -will the portage people advise on speech?

• it's true he is the same sweet boy... but i do see him differently i feel i've simultaneously pushed him too hard and yet not stimulated him enough. - i've let him down by not starting this process earlier.

Please don't blame yourself - 3.4 really isn't that late to get "seen", my experience is with language rather than motor skills, but with language in many areas it's hard to get anyone to take you seriously until your kid is 3, you get fobbed off with "there's a wide range of normal". and that's just the professionals.....so many friends/family have stories of X who didn't talk till they were 4 and is a brain surgeon, Y who didn't walk till they were 2, that almost try and persuade you against intervention....

and it takes time to get your head around all this - don't feel you have to start fighting and researching this minute - it will take time for the initial shock to wear off.

i will say one thing it is not your fault at all

please dont blame yourself but do understand how easy it is

ds has GDD so the same thing as your ds and I wondered if i done anything differnt with hm than my other 3 but realised if anything i had done more as hesmy youngest.

And truth they would have said much the same infact might have just sat on it longer .Fingers crossed with portage a lot on here have found it usefull sadly its not available here
.

Not your fault in any way ...in any form. Don't think that ever.
He is very little and it is quite early intervention actually...i was thinking that when i first read your original post-how much earlier these things seem to be picked up now.

Things take time to see ...and sometimes things resolve themselves without any intervention. I bet he will will have come on so much in the next year or so you won't be able to believe it

He is a lucky boy to have you in his corner.

thanks totalchaos and bubblagirl- i'm in headless chicken mode.

Write yourself a list of all the contacts you have made/ are going to make, so you can see the whole picture and prioritise.

Put a close friends name at the top of the list, ring her/him up and go and have a coffee and a long chat!

Sometimes it helps to see things on paper.

It is horrible to hear that sort of news. You have had some good advice here and I will echo what the others have said it is not your fault although I clearly remember feeling the same. I wonder if it is like a stage of grief.

Hopefully he will get the help he needs now, don't forget to take care of yourself as well.

thanks again. don't really want to talk to fellow mum friends yet as in the past their advice, while kindly mean't, is annoying. for example they will suggest i play the same word game with ds as they do with their kids and think he'll suddenly be cured. They will also want to tell me everything will be alright and not to worry. While i'd love that to be the case i can't keep sticking my head in the sand.

Ds was so sweet during the assessment he tried so hard to do the tasks and was so willing but they were beyond him.

Want to type more but my six month dd is all snotty and has decided not to nap or let me have five minutes peace today (my ds is at his childminders)

yes, i know what you mean about well meaning people with kids the same age! I found that my uni friends without kids were very understanding, as I felt they took me at my word and weren't trying to normalise everything.

I know what you mean about well meaning friends too. It makes you want to 'aarrgghh!'.

The title of your post says it all really. No matter how much you knew your ds had some problems, it is still a shock to have your suspicions confirmed. My ds was about the same age as your ds when he was dx and I can remember the moment in the meeting when the gathered professionals announced their findings as though it happened yesterday; I guess it was a life-changing moment. But my ds was just the same when we left the meeting, he didn't care a bit that he now had letters after his name!

FWIW I also avoided certain friends post-dx because I didn't want reminding of how different my ds was, when compared to the NT kids, and also because I needed lots of time to get used to my new reality and I just didn't have any head-space for NT coffee mornings, uber-proud NT mummies, NT parties and all the rest of it. Your true friends will become evident in due course but needing time to grieve in the meantime is very normal.

mummysaurus, it is so hard. DD1 has GDD, and epilepsy. We first saw the paed when she was 2.7, but like you "knew" there was something wrong. Yet, so many people said things that made us think we were wrong. It therefore did come as a shock to know we were right.

Did the paed tell you in what areas the delay is, and by how much?

You can certainly get DLA & if he needs it, he should be able to get extra help at preschool. DD1 is now 3.4, and she needs full 1:1 at preschool.

What follow up is your paed giving you? You shouldn't be just left to your own devices.

hi lou

all paed said was there was a general delay in speech, organisation/motor skills and concentration and that portage would be in touch- i didn't think to ask by how much.

i called the clinic this morning and they said i'd get a copy of the report.

nothing said about dla. again i suppose i need to wait for report?

mm&j - yes i know some uber nct types. i had convinced myself the reason for the gap between our kids was their incessant hot housing rather than a prob with ds.

it's like when you put on loads of weight but manage to convince yourself everyone else is anorexic (or is that just me )

No that is not just you!

You can apply for DLA before getting the report I think. If you ring up to get the forms they will backdate it to the date of the phonecall. When you have filled in the forms they will then write to the specialist for their report.

yep we had no reports in hand when we applied for dla for ds and got high rate the when was 3 we got mobilty to .They just wroye to paed,physio and everyone else

and nope the anorexic things is not just you