AIBU to be unable to get over the fact a speech therapist said that my child is 'basically a little bit brain damaged'

[CountryMummy1]

I have been trying to get a diagnosis for my daughter since she was 12 months old. She was an awful drooler, hardly babbled, is a mouth breather and now, at 3, has very unintelligible speech. We have seen all the NHS specialists and basically been told nothing is wrong with her, she's just a bit slow with her speech. However, I have always felt that there is something wrong with her mouth or that area in general.

Last week we went to Harley Street in desperation. We have spent £1000s and £1000s on trying to get someone to help us but it all just seems hopeless. In fact this month we are so poor we are living on beans on toast!

I asked the speech therapist on Harley Street that we were referred to whether the problem could be low muscle tone of the mouth as everything seems to fit. She said that she has never seen low muscle tone of the mouth without low muscle tone elsewhere so she believes it to be Childhood Apraxia of Speech. When she was explaining it to me she said that it is DD being 'basically a little bit brain damaged'. She also said that it is a very difficult condition to treat and would take many years of therapy. She also said the no private school in London would take a child with Apraxia. Luckily we are in the Midlands and have a lovely private school locally who welcome any child.

Obviously I am devastated and am blaming myself for something I did during pregnancy or when my husband let her roll off the bed and bang her head. I also feel that she has been written off at the age of 3 even though she has absolutely no other problems with anything else. If she is going to be treated like that then I would rather home educate her.

I have spent the evening in tears since I put her to bed and she tried to say "sweet dreams my mummy, I love you". I could understand her but I want other people to see her for the kind, sweet darling girl she is rather than a failure.

We have exhausted every NHS avenue. She gets a one hour session of Speech Therapy on the NHS every 5 months.

One of my relatives has two children with verbal dyspraxia and this sounds quite similar. It took time but they did eventually get a diagnosis via the NHS and now have speech therapy through their school

Please be positive. She is 3 years old: children can make astonishing progress, even if there are 'diagnosed' conditions.

Hopefully you will find our experience encouraging:

ds1 talked at normal age and quickly developed a large vocabularly, however his speech was very, very unclear. At the age of 4 only his parents and one grandparent could understand him most of the time. This is not an exaggeration. At the age of 5 he did not make any of the following sounds in normal speech and some of these he had never, ever made:
c, g, s, z, sh, l, r, f, v, w, q, p, j, ch...
Basically he pronounced everything just using t, d, m, n, b!

He was referred to SALT when he was nearly 3, but each time he went for. review the SALT felt he wasn't really ready for therapy. When he was 5+2 months he was finally given weekly SALT lessons. He made rapid progress and soon could finally say his own name properly for the first time! He learned all the missing sounds within a year.

Fast forward 12 years or so: he did wonderfully at every stage at (state non-selective) school, straight A*s at GCSE, is on track for top grades at A level, which will enable him to take up the place at Oxford that he has been offered.

I'm not saying that to brag, I'm saying that because no-one would have predicted the confident, articulate, intelligent young man from that 5 yr-old boy. And now if I relate the story to recent friends I can tell they simply do not believe me and think I must be vastly exaggerating the speech difficulties he had.

I wish my story has given you some hope: please stay positive and take each day as it comes.

A lip tie you say? Then there is also an extremely high chance of a tongue tie.

Yes, Dr Levinkind is your man. I saw him for ds2 and he was great. I would make it a priority to go and see him when you have the funds.

In the meantime, you might want to join one of the FB tongue tie groups. DS1 went undiagnosed until he was 6yo and had a list of problems as long as your arm. Funnily enough, speech wasn't one of them, but he had every other related problem going. Learn all you can about it and the problems it can cause so you can address them early (assuming ties are the problem here of course)

Many HCPs trot out the "only affects breastfeeding and speech" but believe me, there is much, much, much more to it than that.

Sorry to hear the speech therapist was so insensitive. I would second the advice given above to ask for a referral to the Nuffield. My DS has profound verbal dyspraxia and has made amazing progress there. Verbal dyspraxia does require a lot of speech therapy, and is hard work, but there is a lot that can be done. It is really important to have a speech therapist who is a specialist in this area.

Also, I have found the Nuffield assessment very helpful in getting help for DS: a Nuffield report carries a lot of weight. My DS has an EHCP (previously called a statement) which entitles him to weekly speech therapy and 1:1 help for some of his time at nursery. The 1:1 is fantastic for helping him to be understood by his friends and having the confidence to speak up.

It's great that you have a good school locally. A good school will look past the speech problems and see her for the lovely child she is. (And just for the record, the speech therapist is wrong - we are in London and there are private schools that will take children with verbal dyspraxia.)

Was it your last thread where someone mentioned orthotropics? After reading up on it from that thread, I took my dd to see Michael mew in purely and he was fabulous!! My dd needs a brace but during the consultation there was much talk about muscle tone. Definitely worth a visit in the future once you've seen the lip tie doc.

Good luck, you are doing a great job.

I have nothing to add, OP, but to say that the responses you have on here are movingly kind and empathetic. MN at its finest. Hope you get the answers you need.

No one is writing her off. It is still early days - she is only 3. I'm tempted to wonder if the small amount of speech therapy given on the nhs means she's not as delayed as you think? I say that as mum of an ex-speech delayed toddler who is now 6 and absolutely fine despite no speech therapy.

Have you considered the state sector for her schooling? I'm by no means an expert on this but I believe there is a lot of specialist help available in the state sector, for free, that would be simply unavailable or extremely expensive at a private school. My DC are at a brilliant state primary with a specialist language unit attached. The children with additional language needs get various extra help - they work in the unit or in class supported by their own TA. It's a large school but despite my initial misgivings on that, I'm converted. They have dealt with many more children with a range of language issues than most private school teachers see in a lifetime. Even if you are set on private school as a long term goal, there might be sense in starting her off in the state sector where the specialist resources are available, and transition her to private school if it turns out she doesn't need them.

Please don't think she's a failure. Things will improve I'm sure

Agree with Strictly - you need a referral to the Nuffield speech & Language centre in London. They are experts in this field. Push your doctor/ S&L therapist for a referral. Don't give up, badger them until you get the referral. My DS was diagnosed with aspraxia of speech, or verbal dyspraxia as it is more commonly known here in the UK. He was 3 at the time. He had no intelligible words at all and it was very frustrating for him and me. He had speech therapy weekly for 2 years (which we paid for privately as the NHS would only offer him 6 weeks of therapy, six weeks off, etc, which is no good IMO) it has to be regular, intense therapy. It cost £50 a week for an hours session. We also had to practice the therapy (sounds, mouth muscle exercises) with him for 15 minutes everyday. The earlier you intervene with speech therapy the better the results. I am pleased to say that by the age of 6 he had a full vocabulary comparable to any other child. He's 8 now and you would never know he had ever had an issue, he literally does not stop talking now, maybe he is making up for lost time! Please don't despair, there is help available and it is a very fixable condition

Just check up on the adenoids potential. I had mine removed at 7 and funnily enough only asked my mum last week why I'd had them removed. Apparently I was a mouth breather and had a few 'issues' that she couldn't quite remember (helpful mum!). But problem solved. They don't touch adenoids these days, but that doesn't mean it's no longer a problem. Worth looking up as it's a really simple solution.

It s easy to get very sensitive about what people say. A bit of "brain damage " resulting in speech problems like apraxia is not writing her off tho it s a clumsy way of suggesting she has a brain/neuro issue causing her speech problems.
The right therapy could really help her.
Find a different therapist that you get on with.
Get a referral to the Nuffield .
How does she do otherwise apart from speech production ? Have you had her understanding tested ?

I know it's easy for me to say but please try not to worry too much too soon, she is only 3 and from what you are saying she is trying hard to communicate with you with what she said at bedtime. My DS was virtually non verbal apart from making sounds and the odd word at 3 and in nursery and reception had an awful time in making friends because he couldn't make himself understood. He had a basic amount of speech therapy but what helped him the most was picking up speech from being at school, learning from teachers and absorbing the chat of the other children. He's now nearly 9 and has an amazing vocabulary and can hold a grown up conversation about loads of his favourite topics. Please don't give up hope, I know other children also who had similar speech problems at pre-school age and were also just late developers. X

Thank you for all your responses. I am making a lot of notes!!

Is it possible to try and get her a statement even if she isn't in Nursery? She is visiting one with a view to attending but she tends to get upset when she can't be understood so we have the most awful separation anxiety - I haven't been able to leave the room yet.

Can I be referred to the Nuffield? Even if I am in the Midlands?

There is a really terrible SALT on Harley Street - well known for her insensitivity and doesn't have good reviews on here. I wonder if it was her - can you tell us her name?

Sorry I got horribly sidetracked. I hope you are feeling a little better.

Hi, the speech therapist you saw should not have said that. I'm talking here as a person who actually has Verbal Dyspraxia, or Childhood Apraxia which is another name the condition is called. It will take a long time for her to speak as people perceive as normal without having to think about it. However, this can be achieved by about mid primary school if I remember rightly. The rest of the time I spent in speech therapy was on specific problems, like getting was s not to sound like my f. Your daughter will be able to grow up to do whatever she wants. I stopped having Speech Therapy at 16. I am 18 now. I have brilliant grades and my target for after high school is medical school. I am well on track to meet my goal.

The NHS have great speech therapists which have experience with the condition. I went through about 7 brilliant ones growing up. This happened while I was in state school and hey supported me immensely. It doesn't matter if the school or speech therapy is state or private. You just have to be lucky enough to get good people who will make the effort to help your daughter.

Now, I have told my mother about this post because she is in the room as I am typing. This is her view on the situation.

I as her mother, know exactly what you are going through. My daughter was very similar to yours, and as she has already said, she has no real problems. Her case was referred to the dyspraxia institute in London, as she breathes in when she speaks, not out as we normally do. I think your speech therapist should be sued for such gross unprofessionalism.

My daughter never made any sounds till 9 months, when my son had first spoke at six months so I knew it was wrong. After 5 years I eventually learned she also could not hear the bottom 5 decibels. This contributes to language. She needs a hearing test and watch it carefully because they do their best to say everything is wonderful.

I'll ask my daughter to let me know of any answer because I am absolutely incensed for you.

I'd gladly shat any time. YOU HAVE NOT DONE ANYTHING WRONG!!!

Sorry that was meant to be chat, not shat.

In case you don't want to say the name - the initials of the SALT I am thinking of are VS. Is that the one?!

Your description sounds just like a little boy in my class when i taught Primary level. He had aphasia. Aphasia covers a wide range of language impairments caused by damage to the language-processing regions of the brain. His speech therapist said it was probably due to a long difficult birth where he could have experienced a small period of oxygen deprivation or it can result from mild brain damage occurring in other ways. Either way he was very bright and really only struggled a little with reading, his comprehension/grammar was excellent.

Anyway as i said your description of traits is identical to his, so these might be useful even if only to discount it:
www.speakability.org.uk/Aphasia has v simple explanations & diagrams or National Aphasia Association website has more info.

The speech therapist was called Valerie .............

Childhood apraxia of speech or developmental verbal dyspraxia is one of the very few speech disorders that requires really aggressive intervention, where delaying or watchful waiting at three can make the difference between an adulthood where speech is relatively normal and someone not learning to talk.

The idea is that the brain sends a message to muscles but the muscles don't respond as expected. To learn how to speak, children with this difficulty need to learn how to break words and syllables down into small parts and build them back up, practising some sound and word many thousands of times until it becomes automatic. Children with this difficulty ideally have daily intensive therapy with no breaks over a relatively long period of time. Some are still having daily therapy in secondary school. However, a huge majority of them who have this therapy will have near normal speech as adults, with very minor differences in how they say very complicated words.

I am so sorry this phrase has upset you. It sounds clumsy, but I won't pretend in fifteen years as an SLT specialising in this I haven't cocked up the explanation, or said it in ways that were unintentionally unhelpful or invalidating.

This NHS video shows a speech therapist explaining this disorder, followed by a mother who has been through therapy and was once where you are now but whose child is doing incredibly well after therapy:
m.youtube.com/watch?list=PLUuSvp_bxdKDj-0WDQgtqtJ4ytPQdpRHu&v=4Nb0wNjI6jI

This speech disorder has really good long term outcomes with the right treatment. There's no failure here. You didn't cause this, nothing could have predicted it, you are doing everything you can. No one wants to hear news like this about their child.