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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

can i just have a sob here(sorry)

34 replies

MerlinsBeard · 28/10/2008 15:12

I took DS2 back to HV today -for those who don't know, i think he is somewhere on the spectrum.

It was a different HV because my normal useless one is on maternity (oh how i cackled when i learned she was having a real life baby of her own - sorry i digress). I was fobbed off again by her saying that each child is individual and it was all probably down to his speech problems (he was speech delayed but his speech is amazing now -still not "normal" but its enough fr me) she wouldn't even let me talk further about what the next step is
I made a Drs appointment for him to see if that is any different but how long do you fight for before you stop? How long do you listen to ppl say that your child is fine when you know as a mother that its' something out of the realms of "normal"?

OP posts:

madmouse · 28/10/2008 15:14

oh poor mom, don't give up, you know your child, deep breaths and make sure dr listens

TotalChaos · 28/10/2008 15:16

Sorry your experience with the HV was pants. What do his ?school/nursery (not sure what stage he is at) think? alternative could you get him referred back to SALT, they can put in referrals to other professionals (well in my city anyway!). What do you think his main problems are? There are lots of ladies on here who can point you in the right direction towards info that you and school (if receptive to new ideas) could use to ease whatever difficulties he has. I had an equally rubbish HV see me when I was first concerned about DS, I do sympathise. Would still like give her a slap even 2 years on.

Original poster

MerlinsBeard · 28/10/2008 15:24

TC we have been on threads together (which oddly i can't seem to find[hmm) and ds2 is quite like your DS in some ways.(i will look a bit harder for threads)

He is 3.5 and at parents eve, his teacher gently suggested that there may be things to worry about but that as i was mainly concerned with his language when he started, that is what they were working on with him most of all. They are AMAZING with him, i have no worries in that respect and they will do whatever i and he need them to do (one teacher even learned makaton in the hols in case he still used it when he started)

SALT are unavailable at the moment(it's half term here)and actually i had forgotten that i could contact them about other things that aren't speech related (if that makes sense)

its so hard telling people all the negatives about your child over and over again

OP posts:

TotalChaos · 28/10/2008 15:31

SALT deal with all aspects of communication/social skills/listening skills, so don't be afraid to pester. It can be hard even for professionals such as paediatricians to unpick what social/play skills are behind purely due to the language delay rather than for any other reason -sometimes only time can tell but HV shouldn't be taking it on herself to make that decision for you. Before you seek GP, speak to nursery again - if they can write a note for you backing up your concerns then you will be less likely to be dismissed as an overanxious parent. One thing though - my GP though very nice and helpful did leave all the mechanics of the referral to the HV system which was a bit frustrating - it did all get done, but it added another layer of stress iyswim.

Original poster

MerlinsBeard · 28/10/2008 15:34

ah,the appt is thursday so i can't get nursery to write a letter. However, i am writing a list because i know that when i actually get in there i will babble incoherantly and leave something out.

OP posts:

electra · 28/10/2008 15:46

This reply has been deleted

Message withdrawn

Tclanger · 28/10/2008 15:47

This reply has been deleted

Message withdrawn at poster's request.

TotalChaos · 28/10/2008 15:57

i'm probably being a bit OTT suggesting nursery write a letter, IME just the words "nursery have concerns" got me taken a lot more seriously.

melmamof3 · 28/10/2008 20:55

This reply has been deleted

Message withdrawn at poster's request.

Kazann · 28/10/2008 21:10

It can go on for ages i first approached my DD's hv when she was 2and a half and got fobbed of several times and all sorts of people been involved since but still no DX and she is 7 now, but i am not giving up have 3 older children and she is so diffrent from them seems the professional people are all very wary of children having labels where we live but i need to know so i can help my DD n every way possible. I have started writing everything down as well as i always remember something i should have said after the event.
It is not easy but keep going and keep strong

Peachy · 28/10/2008 21:14

Oh MOM

ds1 was 5-5 bfore anyone would listen to me, 6.5 he got a dx. We knew something was not average even before birth; imm4e di ately after he was in our eyes a little proessor- and we all know where that misled idea leads

Dont give up but do it in bursts and give yourself time to focus on other things too

Original poster

MerlinsBeard · 28/10/2008 21:22

thank you for being so nice!

I struggled to get his official diagnosis(and therefore proper tests) for his milk into9lerance. I think they are waiting to diagnose me with Münchhausen's we have been back and to that much with ds2 - poor thing!

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Peachy · 28/10/2008 21:25

Oh milk intol

Funny my Paed / GP etc just accepted that with all my intol 3

strange how it varies hey?

Original poster

MerlinsBeard · 28/10/2008 21:28

even though i kept saying that DP is dairy intolerant they wouldn't do anything! IN the end i took him off all dairy myself (naughty!)and after a very long time he is now on soya milk on his cereal and can tolerant a v small amount of diary type food (won;t eat cheese anyway) He did his first ever proper poo(sorry tmi lol) a few days after i took him off milk and

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Peachy · 28/10/2008 21:33

didnt occur to me to wait for approval but ds1 was the opposite- severe diarrhoea, neonatal weiight loss (over a lb and when you start out only 5.5lbs- well eeek)

and the big X factor- I have the same inol. So I just swapped to soya (vaguely remember telling HV I planned it) and did it

no need with ds2, ds3 repeated but got a prescription- I supose the turnaround in ds1 hlped with that

this time just did but bugger wont take a bottle anyhow

lingle · 28/10/2008 21:53

Hi mumofmonsters, so sorry you are going through this. I hope you post that list of concerns as lots of people on this board have a lot of knowledge.

One big positive is that you already have nursery on side. That's absolutely fantastic. What techniques are they using? Is he getting some one to one?

Is it worth having a detailed chat with nursery with a view to finding out exacxtly what additional help they might be able to get and what they would "need" in terms of a diagnosis from the medics to get that help? They may have been holding back a little on topics like this as naturally they'll want only to follow your lead....

Arabica · 29/10/2008 00:54

Have you considered seeking a statement for him as that way, he'll have to be properly assessed? You can initiate it yourself simply by speaking to the special needs dept at your education department. (many apologies if this is something that you feel would not help).

Original poster

MerlinsBeard · 30/10/2008 13:20

Have been referred to developmental Paeds for assessment and tbh i don't know whether to be happy or sad about it. It feels so so awful writing down all the negatives about your child and then having to tell someone while they are in the same room!! I (and Dr) don't know how long it will take for an appointment to go thru but he referred him(us?) straight away.

SO, next question...what happens at the assessment?

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padua · 30/10/2008 14:43

Hi there just feeling for you so much. My ds's first appointment with paed was a few months ago and I guess it may be different around the country but I was really surprised that the paed spend most of the session (1hr) talking to me and only a few minutes at the end interacting with my son. They wanted all the background info from birth onwards. At the end he asked my ds to build a tower with bricks and a bridge then to draw a man with a crayon. He asked him a few questions and that was it. I understand how you feel about talking about them in front of them. My ds hates it. After a few months though I've stopped crying and I'm trying to get a bit tougher. The advice on here made a huge difference as you feel you are not alone.Best of luck with the assessment.

Original poster

MerlinsBeard · 30/10/2008 15:20

how old is your DS Padua?

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padua · 30/10/2008 15:23

He is 4 just started reception.

kettlechip · 30/10/2008 16:03

In our first appt, ds1 was weighed and measured, full history taken, he had to do some tests like build a tower of bricks, colour match, make a peg picture, jump and a few others I can't remember. He was then scored on different areas - visual skills, social skills, cognitive ability etc.

It was far less stressful than I imagined it would be and he co-operated really well. The paed's are very used to engaging children, and ours was very good with ds. He was only 2.5 at the time so your ds may have different tests. Good luck!

TotalChaos · 30/10/2008 17:40

mumofmonsters - waiting list to see paed can be anything from a few months to a year, it varies from area to area. I would try and get hold of the right department and ask them what the typical wait time is.

When DS had his appointment: there was an ed psych, SALT and Paed. The Paed took a detailed history from PG onwards from me, ed psych did some non-verbal intelligence tests, and SALT watched how he played with toys, tested his understanding of language. Then they all went off in a huddle, and pronounced, and told me the next steps. So it only took 1.5 hours. Some areas are more throough and would want several appointments gefore a decision.

Flamesparrow · 30/10/2008 20:19

Be back properly later, but quick yay for referral

Original poster

MerlinsBeard · 31/10/2008 21:28

Sorry that i haven't written this already, it was hard enough making a list for the GP and now i have to do it again

I know some of this is normal but i wrote all my niggles that i have ever had and its LONG and i feel horrible inside for being so negative about one of my children

-He is VERY clumsy
-He makes high pitched noises
-Takes things literally, ie if i tell him to buzz off he will walk off buzzing like a fly
-he has no sense of danger
-he has the memory of a fish, has to be told certain things every time ie go to the toilet flush the chain, wash hands
-he flits from one toy to another and when he settles he will play that way for hours in the same way that he always does and often right down on the floor(it's usually trains or cars or gogo's he settles on)

he plays with new toys the same way that someone else has done before him

-certain things have to be done in certain ways like the morning routine has to be the same -any sudden changes result in utter meltdown(much much more than a tantrum, its like his world has caved in) although if i give plenty of notice he is reasonably ok -he repeats and repeats things over and over -he is still under SALT but when i spoke to GP he said that it's unlikely we are still "active" as the result was good but we are still "attached" to them

sorry, i don't think i can keep typing in a big list like this it's tearing me up

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