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.

Oh my god that is the one Palomino!!!!

The 4yo I know with a definite verbal apraxia diagnosis has a genetic microdeletion which is hypothesised to be responsible (but it's a very rare microdeletion so there isn't much in the literature about it). But I remember her mother was told at one point similarly to you that the HCPs thought her DD might have had a stroke as a baby.

You can definitely try to get her an Education, Health and Care Plan (the new version of statements) even if she isn't in nursery; it can be a good idea to have one in place before starting Reception if possible. IPSEA are a good first port of call for advice and support.

She just basically made the progress we have made in exactly one year (going from having 2 words to being able to use 7 words sentences, admittedly with poor pronunciation) seem like nothing. She just made me feel like the worst mother in the world even though I have devoted the last 2 years to getting my DD help, supporting her at home with speech practice sessions every day etc. She said she had receptive delay which she does not as this has been extensively tested - maybe something to do with the fact that she gave a just 3 year old a formal assessment at 5pm in the evening when she had travelled 2 hours by train and had no nap.

Can you write down the most offensive things she said and then do some exercises with them?

Like imagine Darth Vader saying it, or Bart Simpson
or say it over and over again like when as kids we used to say words over and over until they lost their meaning?

This woman doesn't know you, or your daughter. Her words are just words, they're her thoughts... They don't define you or your girl.

Think of a diagnosis as like a label on a jam jar. It tells you something about the jam, but it's not the jam. You can't spread it on toast. The jam in this case would be the way your daughter makes sounds and combines them to make words. The diagnosis gives a way of talking about those behaviours - it gives information about her speech - but it is NOT a) your daughter or b) anything to do with your relationship or c) anything to do with how you as a mother relate to your child.

It's understandable when you've put all that hope and effort into taking your little girl to this 'specialist' you are primed to take her words seriously... But she is not an expert on you, or human beings in general. It sounds like she communicated what she does know something about very poorly, too.

One activity you might find helpful is to sit with someone and get them to ask you about your daughter as follows:

Who is [daughter's name].

You have someone ask you this question for two to five whole minutes, and you give an answer that is maximum one sentence eg

Someone who loves tickles

Who is..

Someone who is caring

Who is...

Someone who like painting

Who is..

Someone who likes splashing in puddles

Who is..

Someone with blue eyes

You just ask again and again until you've run out of things to say. Speech is such a small part of who she is. That woman has only commented on her speech after a short assessment. She doesn't know her. You don't have to let these words and thoughts bully you, you don't have to believe what she's said that is unhelpful and not supporting you and your daughter at this time.

Oh dear. We saw her and I thought she was AWFUL. (And if you search her name on here you will see that many people say the same thing.)

She said some completely bogus things about my son and his speech delay, that were clearly a load of rubbish, even to a lay person. Saying things like his problem was that he had underdeveloped cheeks and that is why he couldn't make any sounds (in fact he could make loads of sounds and his cheeks are completely normal! His problem is that he is autistic!). She said nothing of any use, mainly banged on about how great she was and how she was once sent a huge bottle of perfume from a grateful client .

But what REALLY got me was her insensitivity. We saw her when I was in a very bad state emotionally, so worried about my son. I remember her asking questions about him, I was trying to answer her questions and she then SHOUTED at me, saying how would I like it if one of my clients (I am a lawyer) started bombarding me with information!! I was only trying to answer her questions, anyone who knows me will say I am someone who really doesn't talks much at all - I am pretty quiet! I was really gobsmacked, I have never been spoken to like that in my life!

Well, I think the good thing is I am sure you can completely ignore what she said. As far as I am concerned she is incompetent and a horrible person too. I have no idea how she is still practising - although perhaps SALTs aren't regulated. If they are I have a good mind to report her. I am so angry on your behalf!

Oh and we are very much regulated. Healthcare Professions Council.

Thanks duplodon. Maybe we should make a complaint CountryMummy1!

She said the same thing about DDs cheeks, that her muscles weren't working

I think she just brought back all my insecurities (after years of infertility and many many miscarriages) that we were never meant to have children and that we somehow cheated fate. I spent years expecting to find DD dead in the morning or to find out that there was something wrong with her. This has only got better over the last year but her words just brought everything back.

When one of my DC was 3 and a half they could only use 2-3 words put together,had a small range of words, all of which were completely unintelligable. Diagnosed with a severe speech delay we thought they would never talk properly. Finally at 4 they got 8 weeks of speech therapy....fast forward a couple of years (and working out of some other health issues) and they had only a lisp to distinguish them from classmates.
Now at 8 they have an astonishing vocabulary and a slight inability to pronounce r's properly. Thats it!

At 3 its not unusual to have a speech delay. If lots of nhs specialists have said there is nothing wrong with her, why disbelieve them all but believe some private person who says something so stupid as they have brain damage?!

I'm just worried Countess that there is something wrong with her and it's being missed. I have read about all the awful side affects of mouth breathing which she always does, she has a lip tie and poor speech. I'm just worried something connects it all and we can't find it.

I understand the worry, truly. But if you've seen many specialists and they are all agreed, its highly likely that they are right. What your dd needs is time. If there is anything to worry about it will be more pronounced as she gets older and the range of what is normal and expected changes. But at some point you have to listen to what the experts are telling you, if they are all agreeing. One might be wrong, but all of them? And it sounds like you have been making a lot of progress which is very encouraging

With the best will in the world, do you think it might be time to look at your anxiety over your childs health, instead of focusing so much on this matter?. You do sound a little obsessive and perhaps you could so with some assistance to help you feel better? I do know what its like to be so worried, and I also have experience of it getting out of hand.

My experience is just one more story, of course. But if you had seen my child at 3 and then at 5 you would be truly amazed. And now, well, I wish they would stop talking often and I never thought I would say that when we didn't get a single clear sentence til the age of four!

... and duplodon's posts exemplify what a good SLT can do. Note how completely different her tone is to your Harley Street person. Which approach is more helpful to you and your DD?

I think your Harley St speech therapist was getting confused with this,

Acquired apraxia of speech can affect a person at any age, although it most typically occurs in adults. It is caused by damage to the parts of the brain that are involved in speaking and involves the loss or impairment of existing speech abilities.

Whereas your daughter may have Developmental apraxia of speech (DAS) occurs in children and is present from birth.
The cause or causes of DAS are not yet known. Some scientists believe that DAS is a disorder related to a child’s overall language development. Others believe it is a neurological disorder that affects the brain’s ability to send the proper signals to move the muscles involved in speech. However, brain imaging and other studies have not found evidence of specific brain lesions or differences in brain structure in children with DAS. Children with DAS often have family members who have a history of communication disorders or learning disabilities. This observation and recent research findings suggest that genetic factors may play a role in the disorder."

Both above quotes from www.nidcd.nih.gov/health/voice/pages/apraxia.aspx

Duplodon: that was a unbelievable post about thinking of a jam jar label. That has changed my outlook on life, my children and how I work. That will stick with me forever. Thank you.

My dd2 is brain damaged. She drooled a ton, wasn't expected to become verbal and didn't start to speak until after 3. She was Statemented very early for communication - we started makaton around 18months, but she had speech therapy from birth. (True story lol. She was given a speech and Lang (feeding) therapist prior to discharge from special care.

We used the Nuffield verbal dyspraxia programme with her (or rather, various SLTs did). She is now 11, has always been in mainstream school, and has an IQ of 142. She actually taught herself to read before she could talk - the first we knew was at three, when we realised she could read CS Lewis.

I will take your comments regarding your daughter being a failure (because someone said she has brain damage) without malice, because I know you were upset and grieving about the possibility of your child not being 'perfect'. But please do know, even WITH brain damage, my daughter and the thousands of other kids in her position are NOT failures.

Now, in the spirit of parents of kids with additional needs - check out the tongue tie. Check out the Nuffield Verbal Dyspraxia programme. Get a decent NHS SLT. Get dd to nursery (the key worker can be trained to provide therapy - the NHS SLT can provide therapy in setting and discuss ongoing stuff with keyworker).

And don't listen to whatever 'the awful effects of mouth breathing' are. It sounds like nonsense.

Ds is three. At this point, my dd was completely non verbal. Spending thousands of pounds is not necessary, you just need to target your attention more closely.

And please, stop referring to kids with brain damage as 'failures'. DD intends to be a lawyer, and given that she has a higher IQ than her paediatrician, I suspect it's quite likely.

I'm so sorry if I offended- I can't even get what I'm trying to say right

What I meant about being a failure is that that's how the Harley Street SALT made me feel about my DD. That there was no hope for her. She spoke about everything so negatively as if there was no hope.

I'm very glad that your DD is doing so well.

And we can't get DD to Nursery as no one underttands what she is saying so she won't leave my side. She gets very very upset when leaving a member of the family as when she tries to say something and the teacher doesn't understand her she gets hysterical. We have had 2 attempts. Both with lots of sensitive settling in sessions so I have no idea what to do next.

So I'm in a chicken/egg situation there. Can't get her into Nursery without help, can't get her the help she could receive from Nursery.

We are in Shropshore by the way of anyone knows any SALT who could help us.

Sorry, I meant Shropshire

I'm so sorry you were upset by the SLT. I feel lucky that when my son was diagnosed with verbal dyspraxia, we were treated respectfully and sensitively.

I agree with the others who say get a referral to Nuffield. I live in Belgium and my son was diagnosed at age four by a group of therapists and specialists, including a physio, pyschologist, neurologist and the SLTs. It was important not only to find out what he does have, but also what he doesn't. His brain does have some differences but I don't consider him brain damaged - I don't consider him damaged in any way.

He is now six years old and while we still have a long way to go with his speech (in his case, his VD is very hard to treat despite thrice weekly speech therapy), he is doing very well in a mainstream school. He is also very happy.

In the UK, your daughter may very well be entitled to a statement of educational needs (which now has another name, I can't remember what).

There are a couple of Facebook pages for verbal dyspraxia if you search for them.

Madwoman- i have just read your post and I agree. My ds has a similar IQ to your dd but I do fear his speech will restrict which profession he chooses. Considering his iPad addiction it's very likely he will become an IT geek and I suppose he won't have to talk much then

Ds was just like your dd when he was 3. Nhs said nothing wrong yet his speech was unintelligable to anyone bar me and dh. Private salt diagnosed verbal dyspraxia. He had no other physical dyspraxia traits at all eg he was riding a bike without stabilisers at the time. We paid for weekly salt sessions for 2.5yrs and he is now 8 and has been taken off his IEP at school as there are no longer any issues. Ds also had a tongue tie snipped at 3yrs.

I blamed myself for the speech problem as ds was a ventouse delivery

All will be well op. Find another salt and keep pushing. We are in Worcestershire or I would wholeheartedly recommend our salt.

Also search for Mikey's Wish on Facebook. That was set up by a 15 year old boy with verbal dyspraxia and he talks about the challenges he has faced and still faces.