Verbal dyspraxia: please help

[AdelaofBlois]

DS (3.2) has always been hard to understand, even for us. SaLT has just suggested that he has a speech disorder, symptoms of which are consistent with verbal dyspraxia. Googling madly have found a lot on verbal dyspraxia, but am very aware how lucky we seem to be. We have a communicative (he uses sentences, prepositions, time clauses, pronouns etc.), gentle child, well in control of his body otherwise, great at reading and maths and interested in the world around him. But we're absolutely sure the diagnosis is right, even if we are also a bit worried about his hearing.

Simple plea really, where from here? I feel quite a fraud in many online fora, problems there much more major, but we have pretty major decisions about what help to give him; how to help his younger brother not model his speech; nursery; schooling (he starts in one year, August baby); and in-laws (who, I sense, will believe this is all our fault because nobody else in our family has had anything like that). We feel very alone and confused, and it doesn't really feel like time is on our side for our preferred trial-and-error approach parenting.

Anyone who's been through anything similar have any advice?

Hmm has a speech unit been suggested at all,

Hi, my DS is 3.1. This is a consideration for him, though my paed thinks not. he has been under SALT for a year, and only has about 15 words - no words togther AT ALL. Is very intelligent and very articulate though.

Tonight we are up all night as in the morning he is to have a sleep deprived EEG to check for a certain type of epilepsy (though this is right - all very doubtful)

I know exactly what you mean about feeling like a fraud, but believe me, this has become very disabling for all of us in it's own right, mainly because he is so advanced with his understanding and processing. He was assessed in the summer, functioning at 4/5 year old, speech at 12 months, so huge gap

He has also been referred to a speech unit to start his Nursery year there in September.

Has your son had his hearing checked?

Please feel free to email me

[email protected] because I really do think I understand where you are coming from, happy to chat! But no worries if you prefer not to

sorry I just meant the epilepsy was doubtful - don't know where the word "right" came from!! My laptop curser has a habit of jumping around as it pleases!!

Thank you both for your advice (and sorry about the sleepless nights-ours are only due to DS2 at the moment, and fingers crossed for no epilepsy). And thank you maxybrown, as you say it is disabling because however lucky we are, we have this amazing child you only see flashes of, getting increasingly frustrated with you and himself because his functioning demands langauge (and, by now) he knows it.

To answer questions:

he had his hearing checked and was found normal range but with glue ear (although all records of this meeting have vanished from the NHS registry). He has a lot of infections (about one every 3-4 weeks), and we've started taking him to the doctor's whenever he says his ear hurts-especially because he varies which so seems to be telling the truth. SaLT is referring him again.

A speech unit hasn't yet been suggested. He is currently at nursery three days a week, and gets on OK there, but does really suffer when he has to talk to those he hasn't been around a lot. How do speech units fit in with other schooling?

Think the plan is to go with intensive therapy (9 sessions in 6 weeks, plus work at home) then see how things are panning out.

Am pleased in other ways he's not stopped going forward (came home proudly counting to twenty and showing me the written numerals for each number), but he is obviously going much slower than he would if he could speak clearly (because we spend so long repeating and trying to understand rather than engaging with what he's saying and doing). But that's where I'm really lost: do I just treat him as normal and work on speech separately, or should I be moving him gently all the time towards speech exercises? At the moment I'm just feeling crap because I do neither properly, am failing him badly as parent, constantly preoccupied and never helping.

I might well e-mail maxybrown later, bump to her through a tired morning.

spech units vary grealy often its morning in unit and intergrate into ms in the afternoon .

Ds attends a unit where he is f/t in speech but its right for him though i did go look at all speech units in teh county

as far as I know our speech unit is FT. I would not want him integrated into MS as it is not our local school and not where I would choose to send him.

Really roundthebed? You looked at them all? do tell!!

round the bend - what county are you in? maybe I can nick all your research? (i'm in Bucks)

lol, I read that as all the speech units in the country I was veyr impressed

Dd#1 (now 6yrs) has verbal dyspraxia (and other issues still under investigation - likely generalised dyspraxia and poss aspergers too) but for me when she was small the only issue I was aware of was her speech. Like your DS she also had glue ear - we went for grommets for that in the end after 6months unresolved. They lasted about 18 months (longer than average) and touchwood no recurrence since then.

We started private speech therapy on a regular basis and used the NHS sessions as and when they were available (few and far between). Regular input from a therapist has been so valuable to her. We have been following the nuffield dyspraxia system for trying to get her to learn the sounds correctly. This involves lots of picture cards, initially to get single sounds made correctly, and later to combine these and say words/phrases.

Now she is at school (mainstream year1) and her speech is a lot clearer, though she still obviously sounds different to her peers. We are still seeing speech therapists and will keep working at it. I have found myself being SO frustrated at times, trying to do her exercises with her and help her to improve. I have also found it wonderful to see her making progress at times too. Regular work at home is essential but it can be tough to get motivated. I found that bribery worked very well for DD in the form of M&Ms! Used as counters on the pictures or sheets and she could have one here and there as a rewards. Perfect!

As for the younger child - don't worry too much. DD#2 has never had any problems with her speech, despite hearing DD#1. They listen to everyone around them and if you just repeat something correctly to them when necessary they will pick it up ok.

Neglientmummy

Sorry I'm in East Herts,But went all over Herts ds unit is not the nearest to me ge attends onebin North Herts. Had bit of argue to get Lea to agree to it but helped as one ov the units said that ds to severe they did about 50% in it and 50 ms bit Lea gave in the end and he does get transport

ds will do 2 Years in the unit and then will decide if goes to another unit for junior years or to s school for dv with physical disablites

normally after couple years they try to get them back into their local ms school but ds has other issues to contend with

Maxybrown
lol not quite but did check out units in Essex ,Herts ,Bedfordshire and Surrey knew was planning to move just not where and yes the unit influenced where I moved to in fact was 80 % of my reasons for moving bug understand not everyone has that choice

Thank you all once again for the advice. We have our first NHS session tomorrow, and a nursery review soon, so I will ask then about whether a speech unit is likely. Also have to choose schools by January, which is frustrating as we will have very little idea about how he is responding to therapy or what his needs are likely to be (I suspect not a statement, this really does seem confined to speech production-not that i'm cocky, it's just his uncle is autistic so we went straight for this, and nursery were worried because he's insular there, but it simply doesn't fit at all).

Thanks beautifulgirls, DS seems much like this without other issues, and suspect will will follow a similar path. Exercises are really frustrating-DP and I end up doing them until DS joins in, he seems very bored. Also, can do many letters of alphabet as sounds (and has done from 2), and can tell you what words begin with relatively well, but just ignores this when speaking. He is actively hostile at times-managing to say a word when tapped out to him and corrected, but then refusing to do so even in a one word answer out of context ('you said that earlier', 'I not want to, now I say my word'). Good to know that the exercises can have an effect. Also, am clueless as to what to do with the new words he gets wrong daily-don't want to stop him developing vocabulary, but equally am pained that each word I eventually get is a word stored wrongly.

Sorry, even in posting this the 'fraud' aspect comes in, am horribly aware most of you would be delighted with these problems. But we are really frightened about how and when he will become generally intelligible, and the more he can 'say' the worse the problem gets for him (because the context is lacking). But, as I said, we have it really lucky.

Any advice on when and if we have a sense of therapy 'working'?

maxybrown, would still like to e-mail but feel a fraud in another sense because, although carer, am a man. Can I still do so?

yes please do so! Even better really to have a different perspective, I can sympathise so much with what you are saying. I don't care if you are an alien to be honest

My DS also gets very very bored with it all and very impatient with us.

Like you say, sometimes I feel pathetic even mentioning it when he has no other disability - so no, please email would be great.

sorry without a statement you wont get a speech unit but it is possiable to be statemented just on speech .The other dc in the unit have no extra needs just speech and there statemented

And dont underestimate how you feel , to be honesti think lac k of speech is the thing that disables ds the most .

He can scoot round ina wheelchair and we worked out ways for him to eat best but theres so many things you use your voice for automatically without thinking when they cant you realise just how much extra you need to think about

roundthebend - no one has mentioned a statement for DS and he has already been referred for our speech unit? He does not attend any nursery currently. Though maybe they just haven't told me.........referral has gone in though, just spoke to the teacher and going to go and see it next Mon morning, though not def he will get a place yet. We will know after Easter I think

ok just seen your ds is nursery dont think need statement for place there is done on referal know few other mn have got this .Though if dc of school age then more likely need a statment for school

Maxybrown

no one mentionesd statements to me for ds either and he has various oher issues if been left to Lea and specialist teachers he would started ms reception with no support

But thaNKS to Mn i applied myself he had f/t 1-1 in ms reception but we all agreed that he needed more help with speech so hes now in unit as y1 there having to learn to adjust though speech is main problem ds is PD to bit of a first for them as normally dc just have speech problems , but were getting there

oh and can also reccomend ican if you need a good report that is honest about dc diffculties

I am confused do I need to get DS statemented to enter the speech unit? They are looking at him doing his nursery and reception year there - so from Next September (he is sept birthday)

Sorry, prob not reading it properly, am very very tired after the sleep deprived eeg.

Ds has no physical disabilities but his speech is almost non existant, he makes a funny sound like "gnn gnn" without opening his mouth at all and I can always feel people staring at us in shops none of them draed ask me yet though. He can't say his name or anything, has about 15 clear as day words, that are only said in isolation. Though did say More last night for the first time ever yay

Maxybrown

nit sure where you are but yes for reception year normally statemented can you contact who gave you referal or call the unit direct and ask their procedure just hate you go to end of nursery year and then find out you need to apply

Though if they give nursery place without statement they might then gather evidence ,Do know another mn on here at a ds at speech nursery then ds was statemented but not for speech unit went ms with some 1-1

yes ds speech like that most of the sounds come from his throat so sound very similar ,Pd aside ds is cognitvley able as his peers .Knows numbers etc though can't hold pen properley is learning to type give him computer he us well away .

He got dx of verbal and oral dyspraxia by I can at 4.4 confirmed by nhs after with the well thought it but did not want to confirm it till older basically sit on fence

His verbal skills are somewhere below 1% which before could sign used to really frustrate him but he verbalised now and if know him well can pick bits out if very slow but if ge is excited or don't know him case of forget it.

His understandding is pretty much normal less does typical 5yo and ignores when suits and he does have a lot to say forhimself very much communicator

And please all of you you are not frauds ds speech or lack of causes more problems/frustrations than anything else it's the thing I worry about most

And tbd sleep deprived EEG no wonder tired swear I end up more tired than ds when he has his

Thanks

God DH just come in from work and we are both shattered now - DS seems fine. Slept well last night, but catching up on us now!

I will ask SALT as there on Wed, though at the unit on Mon so will ask them too. Thanks for the advice about that.

Not sure about his percent of speech, just got told he was operating at about 12 months for expressive speech. Funny that as before he was 12 months he could say a few things that he can't say now!

Maxybrown

when go see the speech unit take questions along there all differnt and some might not have a salt there very often be more done by teacher assistansrs though in unit they do tend to beexperianced also ask. What kind of problems dc have just a broad idea also staff ratios

in ds unit there's up to 10 dcthough only 8 for now ,one. Teacher one assistant both highly experianced plus salt is in 3 full days then 2 half days so has access to a lot of theraphy on whole couple hrs a week at least in chunks rather than one lot

they also have seperAte theraphy room of classroom so can work without distraction sometimes on his own or sometimes in a group

We. Giotto chance to sit in a theraphy section ds also joined in snack and playtime where other units talked over him showed no intrest hence why went for this one

Thanks I will.

They do have a SALT, I am meeting her on Monday.

There is a maximum od 10 children in the unit, that I know.

To be honest though, I won't have much choice of units - I don't drive - as it is, this will be a bus journey as too far from our house.

Am kind of dreading it a bit - my usual job is a teaching assistant so do know what I need to ask - just not familiar with statements in this kind of capacity, and DH is a teacher (secondary).

I just hope they are nice!! It has a really good reputation from people I have spoken too.

My DS3 has Verbal Dyspraxia - he's 8.

I chose not to go down the speech unit route, although we were offered a place. It was the other side of the city and I don't drive - as well as having other DCs to get to school. And I just couldn't bear the thought of sticking a 4 year old in a taxi each morning, which was what was suggested.

So he went to Mainstream, statemented with 20 hours 1 to 1 a week. We also had SALT input once a week every week and practiced a lot at home. His LSA at school did exercises with him and supported him in some of the social problems he had (the other kids couldn't understand him, so tended to ignore him).

And now at 8 he's done so well we've dropped the Statement and unless he's tired or ill or cross, his speech issues are almost unnoticeable. He's always had a lot of speech - it was just that no one knew what the hell he was saying; he had no consonant sounds at all at 3.5. He still sounds a bit robotic, and gets some consonant sounds muddled, but he's done amazingly well. No issues with peers now.

I hope things pan out as successfully for everyone here - it really can be turned round :).

Hassled i to did worry abou havin to put ds in taxi but luckily its ok though he is tired for me did try the Ms but for him it did not work .But pleased did for your ds .

Think becuase wre battling with verbal and oral and other issues to unit wa sonly option for him but he is coming on there .

Yes ds struggle swith constants sounds at 5 .3 so we accept that hemight possiably be a ACC user in the future will consider after had this year in unit what our options are

maxybrown

if in sopeech unit theres always possiablity of transport though accept at nursery age you might not want to put dc in a taxi I have really struggled with putting Ds on the mini bus and is a long day for him .But his escort is lovely as is the other boys he shares with.and even if did drive due to having dd at local school it just would not work

before Mn i had no clue with statements his first wa sbit ropey we then moved and live in Herts and they dont ahve good reputation but hankfully due to what i learnt on here and ican reports he has a good staement now

Really just posting this to say thanks and to tell someone since I'm otherwise all alone working from home and I can't really do any proper work because am in tears at the desk since DS said 'not worry Daddy, we talk when I get home' (or sounds to that effect) so painfully slowly and solemnly when I dropped him off at nursery, and that's just what we can't do. My sitting down and relaxing was a huge mistake.

Have just met speech therapist again, she doesn't think a statement would be appropriate or that DS needs to go to a speech unit. But DS was SO quiet for her, and I am really scared how he is and will be with others if this is how he is 1-1. He clearly has speech and we are very lucky in that some of it is intelligible, but it is so very fragile. Nursery meeting on Monday, with SaLT, so we can also ask there about the social effects of this and just what he says (previous feedback has been, basically, nothing).

Otherwise just trying to feel optimistic, and to count my lucky stars that my son is so, so ace and has as much language as he has, and that it is enough to understand who he is a bit. Hassled's story was a quiet comfort (a lot of speech but can't tell wtf he's saying sums DS up well most of the time), and thank her for it.

And very glad maxybrown slept well-e-mail to her after work. Best to all.