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.

She cannot diagnose brain damage. My DD has something similar but her brain MRI was perfect. Which was reassuring as i also worried about the time she climbed out of cot/ what I did when pregnant etc.

If this is really worrying you please do ask for a referral to a paediatrician who can investigate further and provide a diagnosis for her.

I mean a rereferral obviously now that you have been told this by the SaLT. They need to answer your questions now.

Sorry..am tired..

"Brain damaged" isn't a value judgement, especially in a clinical setting. It wasn't like saying she is a failure, unless there's something you haven't told us it sounds a little like projecting. However obviously the wording has distressed you so I suppose YANBU.

Firstly she is your beautiful daughter and nothing u did made her have a speech problem. Get a good speech therapist they are the ones that can really make the difference. Have you heard of cued articulation? It's hand gestures for letter sounds and has worked brilliantly for our son combined with intensive speech therapy plus lots of home practise

I was going to mention MRI too - has she had one?

Even if they are not diagnosing they should answer your questions.

She hasn't had an MRI as all the paeds she has seen has said there is nothing wrong with her other than delayed speech. There was a query over enlarged adenoids causing a problem but as her tonsils are the right size that has basically been ruled out now.

www.dyspraxiafoundation.org.uk/wp-content/uploads/2013/10/Developmental_Verbal_Dyspraxia.pdf

This came to mind.

Bless you. Your pain is really clear in your words.

I can totally identify, as one of my children has an autism diagnosis and it hurt like hell when they started bandying around terms like 'developmental problems' 'neurological problems' etc.

I don't know a lot about speech and language issues as they pertain to your child, but I DO know that you are your child's best advocate, you know her best and if the diagnosis or terms they use don't feel right and don't fit with your gut feelings, it might be worth seeking another opinion.

I know thats a hard thing to hear. By the sounds of it you have already spent time and money and gone through a lot of turmoil to get this far. But it took me nearly two years to get the right diagnosis for my child (they wanted to diagnose ADHD at first...I knew that wasn't the right diagnosis) , and another two years to get the right therapy and support for my child. It was hard and it was painful, but YOU need to be utterly convinced that the diagnosis and treatment/support your child receives is right. Thats crucial.

Can I suggest you re-post or ask this to be moved to the SN section? Lots of amazingly knowledgable and supportive mums there. You might be able to get some more specific advice and direction. x

I think "damage' was not the right word.

A more positive description is maybe that there is some issue with the part of her brain which controls the muscles used for speech/the pathway between her brain and mouth, but this could be helped by intensive speech therapy.

Oh you poor thing! Of course she's not written off, she sounds amazing and sweet and bright, if you can understand her, the cause of her delayed language sounds more like it's physiological? Although of course you need to get some further investigations done and I would definitely push for further NHS referrals.

If it is something to do with her brain I doubt it will have been anything you or your DH have done, my DD rolled off the bed several times as a baby, I'm sure most babies/toddlers have had head injuries.

The SALT you saw sounds incredibly insensitive at best and like she has made an incorrect diagnosis at worst. Most expensive is not always best, I'm so sorry she has upset you so much.

I'm certainly not an expert but have been reading up on apraxia of speech recently as it's been suggested someone in my close family may have this and is waiting for proper assessment and diagnosis at the moment. It's not 'brain damage' at all and I'm appalled that someone would say such a careless thing to you. It seems that if a child has this condition they need input as early as possible from speech therapy - perhaps it would be worth paying privately if you can find a speech therapist who specialises in this area? I'm so sorry that someone's careless words have upset you - what a horrible thing to say. I hope you and your daughter find some help and answers soon from someone more professional. There is a charity that has a support network and information website if you have a look on google.

It's actually very very good to have a name for the condition while she is just 3 so rhat you can start input ASAP

Firstly, please don't think that any of your dd's issues are anything to do with you - there's no way that her having a little bump or falling has anything to do with this, so don't beat yourself up over that. This therapist doesn't sound particularly professional to me (her comment about schools - hardly helpful) and the language she's using is outdated. My son has dyspraxia and verbal dyspraxia, and these used to be referred to in terms such as 'minimal brain dysfunction' or 'minimal brain damage'. They aren't any more because they're not accurate and have negative connotations. I'm not an expert but I think it is less usual to see children with verbal dyspraxia (apraxia of speech I think is the term used in the US) without low muscle tone and poor motor skills elsewhere, but that doesn't mean it never happens. I wouldn't go back to this woman as she's clearly a) not very clued up on stuff she should be an expert on and b) not very sensitive. The Dyspraxia Foundation are great and have a helpline - could you try there? I feel so bad for you that this bloody woman has made you feel so upset. Please don't be - your dd sounds absolutely lovely and you WILL find the best help for her and she will be fine. Wishing you all the best. X

In the uk apraxia of speech is generally referred to as Development Verbal Dyspraxia, and / or Development Oral Dyspraxia, there is a difference between the two but I have to admit I don't understand it. If you search those terms, you can get good private speech therapists specialising in the method to diagnose and to treat it. The Nuffield Speech and Language centre (in London) is the absolute specialist in this disorder, and they have a world leading therapy and many excellent specialists. ndp3.org/about-the-nuffield-centre.html . Have you been referred to a NHS speech therapist by your GP? The waiting list is long, but Ds was diagnosed by an NHS speech therapist, referred to the Nuffield, went to a specialist school for Nursery, and received excellent diagnosis and therapy through the NHS. He is now in year 3 and doing very well at school, his speech is still a bit off but he is a confident and happy little boy, and communicates well with children and adults.

Developmental Verbal Dyspraxia (DVD) is considered by some specialists (especially Americans) to be a form of brain damage, or brain development damage but this is not a view shared by all specialists. DVD is rarely, if ever visible on an MRI scan. Formally, DVD is not often diagnosed in children under the age of three as the child has to have some speech for the disorder to be diagnosed.

I know of many links, books, help etc. let me know if you want to know more. You don't have to think that this will cost a fortune, or that you need to spend thousands of pounds. It will be hard work for you though, as there is a lot you can do at home.

Looking at another possibility, speech problems, drooling and mouth breathing, as well as a whole other host of problems can also be caused by tongue tie.

Has she ever been checked for this by somebody who knows what they are doing? Many mainstream HCPs do not fit that description and I include SALTs when I say that!

Sorry cross post velvet

my ds has low oral tone and had speech delay. He caught up around 3.5 - 4 though he still over articulates his words a bit. i was told they don't do articulation work under the age of 4 for reasons of focus / concentration. He has some low tone elsewhere and is a bit clumsy.

She has a lip tie so I really should get her checked for tongue tie. I have been told to see Dr Malcolm Levinkind as he is the expert in this area. Unfortunately he is in London and we just don't have the funds to go back down there for a while as our creditcard is maxed out from our last trip. But it does need to be checked I think.

Have you tried your GP? I am very surprised that you would go private without insurance, and without trying your nhs first.