can someone talk to me

[Firawla]

i posted a thread on here a week or so back, about my ds2 that is 2 yrs old. he is very delayed with his speech, also has been delayed with his motor development.

i have been waiting for ages for him to be seen, so today he had his first apt in the cdc and i just feel so frustrated and upset how long the whole process seems to be taking. they did not really do anything at the appointment, its just an assessment to see whether he needs any further assessment, which they said yes he does, but the waiting list will be "several months" - as in 4 or 5 months!! and that wait is only for the next assessment, not to actually start with any speech therapy, although physio should be only a few weeks not months so that one is not too bad but i am more worried about the speech

the person doing the assessment basically just said youre right to be concerned, and his development is delayed - as in some of his behaviours seem delayed overall,and its a developmental isssue? as well as the speech and the motor. so does that mean he is globally delayed? i dont even really understand..

when i asked on here b4 people told me look at dyspraxia/verbal dyspraxia and i felt that seemed possibly quite likely for him, looking at all the checklists/sympoms etc but would that affect his overall development, and behaviour and everything?

i have done the mchat thing and he came back okay?

i am just really confused. i was thinking if i dont get much progress with this appointment then i will make an apt privately to see a slt to get an opinion whether he has verbal dyspraxia and see where to go from there

but this whole developmental delay behaviour thing has kind of thrown me.. so what shall i do?

i want to get him privately assessed somewhere i can not leave him for another 4-5 months without getting him any help

You should be able to self refer to speech therapy now while you wait - although there may still be a list. I would write and ask for speech therapy to start now / contact speech therapy direct. We got seen while waiting for ASD assessment (although sadly NHS SALT for ASD was pretty useless).

I would also ask cdc / paed to put in writing that they agree your child is delayed and merits further assessment (they should send a letter to your GP so you might be able to just get a copy).

There may be a speech therapy drop in e.g. at children's centres. You might also be eligible for portage - contact the Council and ask about early years specialist teachers / play workers. You should not need a diagnosis just confirmation of delay.

You could look at private speech therapy list here

You may be able to apply for Disability living Allowance - look at Contact a Family, Afasic or Cerebra for info on how to show your child needs extra help - you can then use this money for therapy. Cerebra do a speech therapy voucher of £500 but requires neurological disorder and not sure would meet criteria

ICAN website also has info

well, his motor development could def be delayed with dyspraxia.

tbh waiting lists are not uncommon, but now that he is 'in' the system, things will grind into gear. what assessments have they referred him for?
slt? ot? physio?

once the assessments are all done, it will be much clearer, and any therapy will be sorted. the only way to get anything done faster is to pay for private stuff, but tbh you need to leave all of the nhs stuff in the pipeline so that you can switch into it when the appointments come up. it's unlikely that if you get a private dx that the nhs will just turn on therapy for you.

that said, there's loads you can do whilst you are waiting for slt assessment. and none of it will harm ds whilst you wait for assessment. there's lots of stuff on speech delay or on more specific issues like verbal dyspraxia, but tbh for such a littlie the 'therapy' offered is going to be pretty much the same - lots of blowing, licking and tongue motility exercises, with perhaps an alternate mode of communication suggested to back up language in the interim.

developmental delay is a really common term. but until they have fully assessed him, they won't get any more specific than that. and maybe not for some time even then, if ever. kids development can speed up and change so much in the early years that it is reasonably common for professionals to stick with 'developmental delay' in the hope that kids will catch up by school etc. i don't really understand about behaviours being delayed, tbh - are they suggesting a social communication disorder? ie his interactions don't seem appropriate? or is it just motor skills etc? (fine or gross or both?)

two is still v little to get a definitive dx. it is frustrating, but i can kind of see why they refuse to be specific at this point.

Hi, sorry you're having such a rough day!

before you go the private speech therapy route, have you asked whether your hospital has a weekly drop in speech therapy session? My DD has severe learning difficulties & poor muscle tone (she has Down's), as a result we seem to live at the CDC at the moment. They always have posters about SALT drop in sessions for any parent who has concerns about their child's development (no referral needed). It seems to be a play group where a SALT will be available to observe your child & give practical tips.

If they don't then the Hanen course (books available online) produced amazing result with DD, she's gone from having no speech at 18 mths to about 80 signs / words within 3 mths.

May seem like a daft question, but have you had his hearing tested lately? As that was also a major factor in DD delay (she had glue ear). It was really simple to fix & the change in development speed was unbelievable, it also helped with her balance. Might be worth asking GP about it if it hasn't already been checked.

If all else fails, get your HV on side, as ours was brilliant at helping us navigate the system / understanding who the real influencers were & who could help us reduce the waiting times initially quoted.

You can self refer for Portage. Check the Portage website to see if they operate in your area. It's well worth doing, as they will also be able to contribute reports for Dx, DLA and Statutory Assessment. Plus they are very good at tailoring play therapy to suit your dc's developmental needs.

yes, definitely self refer to Portage.

check your local Children's centre for SALT drop ins.

you could go private for a developmental paed appt, but there is still likely to be a wait, as they get booked up. the difference though, is that you have the wait and then a result (in all probability), rather than the wait to be put onto yet another waiting list, iyswim.

definitely check out Hnen books and courses too. you could also look into PECS courses (run by Pyramid) to help with communicaiton issues - you would get a LOT of info on general reward/reinforcement from that too.

thanks for all the replies

proudmum yes his hearing was tested last week and he does have hearing problems, i think along the similar lines as glue ear? but all they want to do for now is leave it and test again in 3 months then keep testing to see whether it improves and if not then eventually maybe hearing aids.

actually we may be still on another waiting list for slt, which he was refered for ages ago but it has just been quite long so i forgot about that referral maybe will have to just call and chase them a bit. i think it is for concentration and listening group which they have to go through before they can have the one to one speech therapy?

i understand 2 is quite little and maybe too little to get any proper diagnoses, i think i just want one cos at the moment i feel lost. i feel like i need to know exactly what the issues are so we can takle them otherwise just feel all over the place. tbh it probably wouldnt even change anything, mayb i am kidding myself that a diagnosis of something or anything will just help him quicker

madwomaninattic development behaviour she mentioned about him throwing things?? (he is not 'naughty' he doesnt throw stuff al the time or anything!!) apparently the way he just throws stuff aside if he doesnt want it is something younger than his age? tbh i am not quite sure exactly what she meant by it.
i think his social interaction etc is okay

okay so i think i will try and start with: call the speech and language and chase his previous referral a bit more, get the hanen book n see what i can do, try and get portage for him, get something written down from the cdc

if i want to get private assessment who should i go to? stick with my previous idea about the dyspraxia specialist - will they have general knowledge about all kind of delays if it turned out to be something else instead of or in addition to dyspraxia?

thanks i will google the pecs course too

the childrens centres in my local area are crap unfortunately! there is only 3 for the whole half of the borough where i am, and i dont drive (really need to learn) - i really miss my old childrens centre they would have helped him so much more.

re: being on waiting lists - let them know you can (if applicable!) make short notice appointments.

call each week, be unfailingly polite, and enquire whether there are any last minute cancellations, and remind them you are happy ot take them. sometimes this works, and often, the people who make the (nicest) biggest nuisances of themselves get seen...

re: who to see, I am not sure. there are people pn this board who have seen various private specialists for dyspraxia, verbal/oral dyspraxia, general developmental issues etc, but I have not - it might be an idea to start a thread with something along those lines in the title?

whereabouts in the country are you, and how easily can you travel (eg to London)?

im from london so shouldnt be too much of a problem travelling to see any specialists as i guess most are here anyway?

I know a fab OT in London, who did wonders for my dd1 - far more than 'just' her motor skills worked on. they also have links with a SALT, but don't really know how 'good' the SALTs are - all fine and dandy, but don't know if they are specialist in any area particularly.

I shoud imagine you would find a good range of specialists - it's just a case of finding out who you want ot go and see.

I have two deaf children. Hearing aids are essential. What was the hearing loss? Get a copy if the audiogram and if your dc is hitting 50dB in the speech banana then aids are essential and I would get very cross if I were you.

Hi, this might sound weird but it's actually relatively good news if he has glue ear, as that may turn out to be his main problem - it definitely delayed dd speech & balance significantly. The good news is that if that turns out to be his main problem then it is really easy to fix, a very simple minor operation to fit grommets & once corrected, providing that is his only problem, it shouldn't cause any permanent issues.

I know the 3 mth monitoring period is frustrating, but they need to do that to see whether the problem will rectify itself, which it might. The surgeon will also insist onseeing a number of readings before deciding whether to operate , or go the hearing aid route if you don't like the idea of surgery, so it's not actually wasted time. It also allows for the ear canals to get slightly larger, to help with the grommet insertion. DD was monitored from when she was 8 mths old until she was 17 mths before they inserted her grommets, once they decide to operate the waiting list was only a few weeks. We did the Hanen programme & went to signing classes whilst we waited for her to be old enough to operate.

Should probably add DD hearing was pretty much none existent before the surgery because the congestion was so bad. We were fortunate that we were looked after by the head of audiology, so when she saw how bad DD hearing was she arranged for DD to be monitored monthly & helped us get onto a signing course & skip the usual waiting lists.

6 months after the surgery DD still has virtually no hearing in 1 ear, but the other ear is now working at 'normal concersational' levels.

proudmum that is what i was thinking if its just hearing related it would be quite simple but the woman saying he is developmentally behind, seems like it couldnt just be so simple as just the ears? i dont know :(
he is not deaf, he can hear it just took him longer to register the sounds, needed it to be louder than normal before he shows a response to it etc?

It really might be that simple.

Especially if his ears are as congested as my DD was, she was only hearing the very loud noises, so wasn't able to hear normal conversations to pick up any words (or meaning of words). It also threw her balance off completely. The best way I had it explained to me was " it is like when you're on a plane before your ears pop (or you have a heavy head cold) & everything sounds faint & distorted & your balance isn't quite stable" Did the audiologist show you how far below the 'conversational speech banana' your DS was? If not, it might be worth asking for a copy of the report & asking them to talk you through it.

In the meantime try watching 'something simple' with him on CBEebies to see if you can pick up a few signs.

no they never mentioned anything about conversational speech banana, so i will have to ask about that cos i dont know what it is, but my ds can hear and understand if you are looking at him and have his attention, so he has been able to understand words and he can hear a bit. but i think more signing would be helpful for him, he can do a few and he does like mr tumble

You need a copy of the audiogram. They should have given you one when you saw the audiologist. Perfect hearing is at 0dB. 20dB is soft whisper, 45dB is quiet voice, 60dB is general conversation, 70dB is a shout. My kids hearing loss is 60dB unaided. Their aided threshold, as they have a conductive loss, is 20-25dB. Your dc has imo what sounds like a conductive loss. My youngest has glue as well, but his is unusual because of where it is in within the workings of the ear. We had to have a CT scan to find out what sort of glue ear he had.

thanks, i will have to call and ask them to give it then. she only gave me a couple of leaflets nothing about the results of his test