How do you tell when anxiety about your child's problems is becoming unhealthy/a clinical problem?

[mummytosteven]

DS 3.2 has very delayed language (expressive and receptive) and has some other issues re:social/imaginative play, such that he is on a waiting list for multi-disciplinary assessment (appointment date next Jan FFS). He has had a private SALT appointment. I think some ASD diagnosis is on the cards (everything I have seen on Semantic Pragmatic Disorder rings huge bells).

Since I took my head out of the sand as his 3rd birthday approached and his language didn't magically improve I have been quite miserable and pre-occupied about DS's speech problems and possible ASD. Is it normal to feel like this pre-diagnosis? How do I tell when it becomes an unreasonable level of anxiety?

[Troutpout]

I don't know M2S...i do know that i felt a similar thing to you when i first finally admitted that my ds might have problems.
It was a kind of grief i guess...and it lasted a few months.
I can't remember why i suddenly turned a corner ...i just suddenly remember letting go of it one day and realising that he was the same boy as he had been before and that i couldn't change him.I could only help him.
Hope you start to feel a bit better about it soon.Do you have a RL friend you can talk to about it? I have a very good friend who has some probs (although very different) with her ds . She understands totally and it helps a lot to reassure each other about our rather unique boys.

[mummytosteven]

thanks for the reply, troutpout. I have a few friends who are reasonably good to talk to IRL, but who haven't been through the SN/diagnostic process so I find myself having to explain loads about ASD etc, which I find wearing tbh. And the odd "helpful" comment - such as - well some kids are good at different things - yours has problems with speech, mine has problems with sleeping /thud. I have a very supportive mainly cyber buddy (she lives a couple of hours away, have met a few times) with a son with ASD, but I feel bad about unloading too much on her, as she has plenty on her plate.

[mummytosteven]

On top of the general worries, I'm finding "managing" the diagnostic etc process overwhelming - as I have to chase and chase - the NHS SALT dept don't bother sending appointments out till a month beforehand, and current waiting time is 10 months (and multi-disciplinary is same wait as SALT, all seems to be arranged at same time). and the sep paed appointment GP was meant to arrange seems to have vanished into the ether, and GP hasn't responded to my phone message. HV system has been as useless as chocolate teapot so I don't feel I will get any support from them. Only ray of light is finding a good Children's Centre which are about to run a Hanen course, where a child psychologist is in attendance. I'm terrified of what will happen when S starts reception next Sept. Although this seems like a while ahead, if he is going to need a statement, the NHS wait is cutting it very fine...

[bobalinga]

This is out the blue....there's a genetic condition that causes speech delay where the boy has an extra X chromosone. Apart from that the only other effect is infertility. Klinefelters syndrome. I'm only mentioning it cos I know someone who's child has it (actually I know two) and he was diagnosed with ASD to start with before a blood test showed this syndrome. Once you've got an ASD label, then every 'behaviour' suddenly looks like ASD even if its normal!
Of course, its rarer than ASD so less likely but its always worth considering.

[mummytosteven]

thanks bobalinga, is Klinefelter's the same as fragile X? I doubt it is any syndrome, because me and DH and various other relatives have lots of aspie traits, but if it just takes a simple blood test, then it might as well be ruled in/out iyswim.

[mummytosteven]

thanks fio. I mostly am not at that stage I don't think, but am comfort-eating and getting stressed out when having house viewings to sort out. I feel on the one hand that unless people have been through something similar then they don't understand, but on the other hand I feel a bit of a fraud moaning to people with kids with special needs, when S's doesn't even have a diagnosis. I wonder whether that is a sign of depression though, feeling unworthy

[mummytosteven]

thanks fio. I know from prior experience that the counsellor attached to my GP surgery is not only a twat but a potentially dangerous one, possibly I might speak to NAS helpline for genereal support and for advice re:school etc. I was thinking more of getting the Prozac upped (the lazy way out)...

[mummytosteven]

I don't bear a grudge against all the NHS professionals I encounter, honest .

[mummytosteven]

I don't bear a grudge against all the NHS professionals I encounter, honest .

[sphil]

I remember feeling very similar before DS2 was dx. I literally couldn't think about anything else; spent hours on the net at night terrifying myself (before I found MN) and would then go to bed feeling very anxious and wake up jittery. During the day I read anything and everything I could get my hands on and then felt guilty because I wasn't interacting with DS2! I remember feeling 'unworthy' a lot of the time.

It did get much easier once he had his dx, for some reason. And like Fio, I found a counsellor. Ads helped too - took them for about 9 months.

So yes, in my experience it is normal! But looking back, I should have got some help earlier. It's just that feeling that everything is on your shoulders, isn't it - and that if you don't do everything, nothing will happen. Thinking of you x

[mummytosteven]

god yes to your last sentence! and then in between the having to keep things moving, there is the conflict of wanting to stick your head in the sand and hope it all magically goes away anyway.

[sphil]

My counsellor used to say that I had to remember that it WAS all a terrible strain and that it was perfectly and utterly normal to feel anxious and miserable - and that did help, because somehow I always felt I should be coping, there were plenty of people far worse off than me etc etc.

[coppertop]

I can remember trawling the internet almost obsessively when ds1 was a toddler. It was how I found MN.

I think it can be difficult to talk about with people IRL who don't have much experience as they almost instinctively want to reassure you that everything's okay. Then you start to feel as though you're going on and on and getting obsessed if you bring the subject up again. Pre-diagnosis IME was the worst time. You lurch between wanting someone to tell you you're right to worry but also dreading that you'll be told that there is a problem. It's like being on a rollercoaster but with no way off.

Have you spoken to someone from portage? I found them really helpful as RL people who knew what we were going through.

[mummytosteven]

thanks coppertop! will having a speech delay be sufficient for referring to portage? and can I self refer? HV as useful as chocolate teapot.


funnily enough my friends without kids have been quite good - as they assume I have a brain, and that if I am concerned, I have some basis iyswim - and they are urging me to sod the waiting list and go private for diagnosis... otherwise of those without SN kids a few have been ace - just a simple "god I can see why that would be worrying" or "well much as I'ld like to say he'll be fine and his speech will come on, obviously noone can 100% guarantee that".

[Aefondkiss]

Copper well put - You lurch between wanting someone to tell you you're right to worry but also dreading that you'll be told that there is a problem. It's like being on a rollercoaster but with no way off.

hello mumtos

[mummytosteven]

Hi Aefond, not sure if hotmail ate my last e-mail to you or if I frightened you off

have finally arranged a 9 week hanen course starting in June, otherwise no NHS appts/assessments till next Jan , the paed appt in June/July doesn't seem to be materialising....

[Aefondkiss]

mumtos, sorry if I didn't respond, I cannot think why...

in my defence I do get a bit depressed about all this, head in sand attitude, I do feel much less pro-active than you, tbh, maybe I am still in denial?

the hanen course sounds positive, I am frustrated by the SALT, I feel like they want me to jump through hoops before they actually start doing anything in the way of speech therapy...

we had two salts in the house recently, dh was here which was good, I would've been in buckets of tears otherwise. they stayed for an hour and a half and talked, did some more observation of ds (he has been observed every few months since last october)

I just want them to DO something or go away, this hovering business is driving me insane.

they came to see about referring him to a paed I think, I am not sure what they are doing, if they were really concerned about ds would they be making more of an effort or is this the way it is?

I could talk forever about this btw - sorry

[colditz]

Oh I can so relate to this, and like Coppertop, trawling the web about speech and language developement was how I found MN.

the other week, I had an awful dream, that I was telling my son of, bribing, coaxing etc, and trying to make him swallow 20p coins, and getting so frustrated and utterly GUTTED when he wouldn't/couldn't.

This dream haunted me all day, and it was as I was posting about it here that I figured it out. WEhat do 20p coins do for you when you're a kid? They make things ^work. I was trying to make his mouth work properly in my dream. I sobbed my bloody eyes out about it.

So, I think that quite a high level of anxiety and misery is normal, when dealing with the stuff you're dealing with. Councelling is an excellant idea.

[mummytosteven]

aefond - sorry that you are finding the SALT less than helpful. Are they giving you any exercises/suggestions of work to do with him? I can e-mail you a copy of what the private SALT suggested I work at with S if that is any good to you.

I haven't found that anyone I have expressed concern to has actually done anything in a hurry - so I would ask directly rather than read anything into SALT attitude about paed I am afraid.

Colditz, sorry to hear about the 20p dream! Have you had any diagnosis for your DS of any language or other disorder, or is it a "simple" speech delay.

Will speak to the NAS and or AFASIC helpline in the next week or so to get general advice (need to steel myself for that). I also need to put a rocket up nursery's behind about getting the early years advisor in from the council to assess S (was meant to have been done in Feb FFS). My other concern re:nursery is that he doesn't seem to have moved up a room since he turned 3, I don't know whether that is normal or not, or whether they are keeping him back because of his problems. If so I will be if they haven't bothered going through it with me.

[mummytosteven]

colditz - another nosey question - if you had counselling about this issue, did you find that they were understanding of your concerns, or that they were more "oh he'll catch up soon enough, don't worry"

[Aefondkiss]

hmmm MumtoS I would be annoyed with the nursery if they weren't letting me know what is going on.

yes, please send me any hints/tips ideas you have it would help

I hope you ge tthe advice and help you need, it would be good to hear how you get on with NAS and AFASIC

[colditz]

MTS

I haven't got any kind of clue what is wrong with ds, and why his speech is so slurry. SALT thinks it may be his lack of attention - he doesn't listen so he never leartned properly. Certainly he was very very late to speak. He has been given heaps of exercises with his tongue and a VERY good thing we are doing is 'clapping' a word out - it makes him articulate more accurately, rather than slop it out because he wants to get talking about it over and done with!

What the counceller mainly does is acknowledge my frustration and guilt, and allow me to acknowledge it. She helps me to realise that my best is good enough, which is a good job because it has to be good enough.