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.

Country, I'm really sorry you are going through this with your daughter. My son (now 7) sounds similar so hopefully this post will help.

My son didn't speak/babble or say anything intelligible at all and we realised that he had issues when he was around 15 months old. Initially we were fobbed off by our not so wonderful GP with lots of talk about lazy boys, so I took on a private SLT who helped him to make some initially sounds. He has low muscle tone in his mouth, tongue, trunk and fingers and his low oral tone made forming sounds very difficult. We worked on some exercises which helped (pulling faces, sticking out the tongue, moving it up down and around) and it gradually helped.

He had his hearing tested which showed significant glue ear. We saw a harley street ENT who recommended grommets, but despite raising the issues of mouth breathing, told us that adenoids are no longer removed. There is family history of enlarged adenoids, but they refused to look at this, so they just monitored him, and eventually gave him grommets when he was 2.5. Nothing much changed despite many promises that he would now start to talk.

We then moved overseas, and have been able to do a lot to help. He's had his adenoids out and new grommets which made a HUGE difference to his clarity of speech and he actually acted as though it was the first time he'd properly heard the world around him. Please, please push to get this looked at - it's a quick, simple surgery and the results are almost instant. Do not be fobbed off - they can do a quick head x-ray to check the size of the adenoids but if she does have issues with mouth breathing, and speech, it's not a hard leap to make that she also has enlarged adenoids affecting her hearing and ability to breath normally.

We also saw a cranial osteopath who worked directly inside his mouth to help him increase awareness, mobility and sensitivity in his mouth and particularly his tongue. Again, very, very helpful to his clarity and diction.

Also perhaps look at diet. Does she often have a snotty nose? Sometimes children with speech issues also have food intolerances, pariticularly dairy and gluten. We've had big success with speech since removing both.

A good fish oil is essential - have a look at the Nordic Naturals pro range - we give 2 EFA and 1 EPA daily and have for the last 5 years. We see definite benefits with clarity (notice when we miss a few doses).

Apologies for this essay, but I hope it helps a bit. I've been there, I know how hard it is. Keep pushing for the help you are entitled too. It's very hard to have a child who can't communicate and at 7, my son is still not 100% but he's come on a long way. Happy to pm if you want any more specific info.

It must be an awful feeling, however it does seem that you've gone all around the houses looking for confirmation that your daughter has a problem and now have just focused on the most negative outcome possible when all the other specialists have said something different. Let things run their course, keep and eye on it and let your child have a childhood, the more anxiety you're getting yourself into will then transfer onto your daughter and cause her issues.

I have not had a chance to read all of the posts, but there's some really helpful advice here.

eastend thanks for the post about adenoids. DS is 3 and has a DVD diagnosis after years of ENT issues. About to have a second set of grommets on the NHS but I think I will ask for a rare feral to his private consultant who suggested now may be the time for adenoids removal. As well as his speech issues, he snores, has constant infections and wakes several times a night.

To the OP, the SALT was wrong to call it that. I have practised professionally in an excellent London private practice ( not SALT) but some 'Harley Street' types are not exactly up to date with best practice and have been out of the mainstream for years. Deep breath....look at your gorgeous daughter.... Smile and carry on doing your best and having fun together.

Dawndonnna's dd here.
I don't know if this is any help at all, but at the age of two my mother was told that I would never walk and talk. I drooled, I was (and still am) a mouth breather, I had sound but no speech. I can do both now. The walking is very, very limited and depends on all sorts of things like weather, how tired I am etc. but my speech, in the main is fine. You would have to know me well to know when I'm struggling. I have to speak as though I am shouting, I'm not, but I am aware that I am a little louder than most, if I speak quietly I can't be understood. It's as if I have to push the words out, so I sort of force them. I don't know if that makes sense. If I'm tired, my speech becomes a little slurred and my words can get muddled. I am doing A levels and am in mainstream school. There are people on here who have met me and probably noticed nothing different about my speech at all.
Mum and Dad did work extremely hard with me when I was young and I was lucky enough to have Salt involved until I was sixteen.
My palate is too high and I have a delayed swallowing mechanism both of which contributed to my difficulties.
I do hope this is a bit of reassurance for you.

Re nursery, it might be worth having another go. Her speech has come on loads as you say in the past year, and her carers will 'get their eye in' with understanding her. And I wonder if you might be very worried about leaving her because you are so desperately worried about her being understood, and she in then interpreting your worry as "mummy doesn't think this is a safe place to be" and therefore clinging.

Very different for us because I had to work, and DS was in nursery from 12 months, but lots of preverbal children settle at nursery. My DS's preschool class were taught some makaton signs before he joined, which helped. He joined a separate preschool at 3 with virtually no intelligible speech but like a good SLT, the staff always looked at what he could say, not what he couldn't. This, I think, is really important as it gave DS confidence in himself, and if I'm honest, buoyed me up too and helped me put his issues in perspective. I am too inclined to obsess.

With my children at preschool age we preferred to run settling sessions without me there - DS in particular had trouble understanding and I think he would have been confused and upset if I'd stayed and then changed the 'rules' by leaving. We went with breezy, positive goodbye (give child to keyperson) and swift exit. However you know your child best. The most important part of a settling session happens before you even get there - bigging up how much fun it will be and quietly setting the expectation that mummy will not be there but she will come back and pick her up at . Our preschool had a welcome booklet with photos of everything there with captions: first you hang up your coat here, this is the book corner, this is the toilet. We went through that loads before he set foot in the door, then followed it through including the leaving bit so everything happened as he expected. Don't give rewards or praise for being brave, because again that says you think it's scary, and don't even think 'my poor baby going off without me' because it is easier for her if you are projecting positive vibes. Don't say you missed her, say you are happy to see her again. All that kind of stuff. Sorry I've rambled and you probably know all that already, but having had DS at both nursery and preschool before he had intelligible speech, and both DC now having classmates at school with significant speech issues, I do think unclear speech shouldn't be a barrier to her going to nursery/preschool.

We found a very tiny community run nursery that was massively supportive of my dc's issues, it was wonderful. Maybe have a look for non traditional settings that might be useful.

My daughter was referred to a speech therapist when she was 3. She was a terrible dribbler and her speech was poor. She is now all grown up, she has 6 A levels, all grade A (before A* was introduced) and a first class honours degree. I don't think it is reasonable to write off a three year old just because of speech delay.

She can still be hard to understand if she is speaking quickly but it doesn't seem to have held her back.

My daughter also had a lip tie which was corrected when she was about ten. To be honest it didn't make any difference. She wasn't tongue tied but I suppose they can be linked.

You need to contact a SLT who uses talk tools and devise a home and school program. They work on precisely this problem. Unfortunately they are like hens teeth

What the therapist said re brain damage is quite heavy handed. Try to look at it as a slight difference in that part of DDs brain but it is relatively minor and over time with lots of work it should improve.

You have done nothing wrong at all as a parent, I can understand you being upset at your child being described as brain damaged because I would be to, in fact reading it did upset me because my son has Verbal Dyspraxia. Just to reassure you slightly, he is now 8, in mainstream schooling and coping well, his speechless improved dramatically with the speech therapy he received (and still does) and he is catching up to his peers There is a light at the end of the tunnel, with help your DD should do very well.

*speech has

To Dawndonna's DD this is fabulous to hear

I dont think you should blame the infertility. Dd was ivf and she and speech are fine. Although she also does have lip tie (like me) and i guess probably post TT, it doesnt affect speech, though is quite loose.
I know what you mean about the worry of causing it DD has to wear glasses and im worrying it was the forceps/ventouse and also a flat head on that side.

I think midline defects like TT can be related to infertility.
How is she in playgroups, i would think going every day would be as good if not better than nursery.
Will she be at school at 4/5? As if its next yr i would think its worth her going to nursery to adjust.

If no one understands what she is saying, that is why she needs additional support at nursery. The keywoker can be trained, and familiarity with speech patterns or methods of communication makes it much less complicated. Your SLT can be providing alternative methods of communication while you are working on the dysarthria. Some kids have an 'all about me' book with common phrases linked to pre-schoolers needs and her prticular likes and dislikes, she can be taught to sign - lots of kids of that age use makaton, and it isn't an 'instead of' speech - it is 'as well as'. It's important to be teaching her to communicate - and her SLt will have a lot of ideas on that score.

Her paediatrician can write to education board with her communication requirements. You need to discuss her needs with the SENCo of the nursery, who can contact the Area coordinator for assessment and looking to put in 1-1 care if required. 'Settling in sessions' are for regular kids who are a bit anxious - you need to treat her nursery registration as registering a child with additional needs, not a regular kid. Speak to whoever provides the Area Incusion service for pre-school at your local school board. Explain you have a child with additional needs and speech delay. If you really want them to take notice, tell them the SLt says she is brain damaged. You have to use every tool in your box, really.

I will also say, private nurseries can be good at this, or they can be rubbish. Sometimes state nurseries are much better. They have better access to the Area Inclusion team (often these teams will have a communications specialist as well) and are often used for placing kids with additional needs.

Private nurseries tend more towards parents sorting everything out (contacting Area yourself etc)

We have used both, and both have worked for us. But sometimes private nurseries just don't know how to work the additional needs system, as they don't have the experience.

That speech therapist does not sound very professional at all. She cannot diagnose, to say something like tgat about a child is dreadful, thought that went out with the dinosaurs.

Your DD sounds wonderful and very caring, good luck with fighting for a diagnosis / answers .

Ds just 3 has speech of a 15 month old, but understanding is great. When at pre school he tends to withdraw. Thanks Downdonna dd, it is great to hear about you and your fantastic progress, and others on here too

OP, re the tongue tie, you could try a lactation consultant. They are trained to find tongue tie in babies but should also be able to identify it in an older child. The NHS clinics won't accept a child your daughter's age but have a look on here at tongue tie dividers - I can't immediately see one covering Shropshire but you will know areas better than me. Ann Dobson is fabulous and seems to travel quite widely. They won't be able to resolve the tongue tie themselves at such a late stage, if there is one, but will be able to advise you on next steps.

www.tongue-tie.org.uk/tongue-tie-practitioners-nhs.html#West

And much sympathy. It sounds like such a frustrating process.

i think i saw that slp when my son was young (not v useful then...) so she must be about 90 years old now? from another era...

as well as addressing the speech production use lots of signs and symbols photos to get her message across there are some really good ipad communications apps you can try.

erg you can download gridplayer for free for example tehre is a preset page no animals so if you want to talk about your trip to the zoo call up teh page of animals and she can then say which ones she saw. etc
www.callscotland.org.uk/Common-Assets/ckfinder/userfiles/files/iPad-Apps-for-Complex-Communication-Support-Needs.pdf

itunes.apple.com/gb/app/grid-player/id456278671?mt=8

i like gridplayer

appsforaac.net/applist

appsforaac.net/app/mychoicepad

proloquo american but you can edit it yourself

www.speakforyourself.org/

these are about supporting what she wants to say so she can make herself understood while you work on the speech alongside

anotehr nice simple one is www.iasku.co.uk/

Have no advice for the OP but wanted to wish her luck.

Also, to all, please remember that Harley st is an address, NOT a qualification or indication of clinical excellence. I could argue that these who don't work there are more likely to be up to date, ie those in NHS. Obviously it is dependent though.

I am feeling much more positive today. I had a lovely, happy day with my DD and she did some really good talking.

I also spoke on the phone to a lovely private SALT who made me feel much better. She said we had done so well to help DD progress so much in a year with little support from outside agencies. She also said that her team calls it verbal dyspraxia as it is so much more positive than apraxia. She is very highly trained in the Nuffield system and would undertake that with DD as well as write me a referral to the Nuffield centre.

So overall much more positive. Thank you everyone for your help and kind wishes