I am so shocked-DS just had a CELF test

[bunnyhops]

Have just been told by DH he had spoken to our ds's spech therapist and she did a CELF test with him and she is now saying his understanding is good for his age but he has selective muteness.He will probably have to go to a special school in May on a permanant basis.
He was 4 in August.

I am sitting here typing this in tears as I feel so useless as a mother and although I know his speech was delayed I did'nt think it was this serious. Dh just told me this and is still at work and says we need to discuss this tonight as we live 15 miles away from the school she is recomending and I don't drive.I also have a dd who is 2 and a half and has been referred for speech therapy also.

Just in shock and wondered what I did wrong?

If anyone else has been in this situation I would welcome your advice.

oh bunnyhops . I know very little about SN, but I doubt very much (in fact I would put money on) DS's and DD's problems ahve anything to do with you or anything you feel you may have done 'wrongly' during pregnancy and beyond/

I didn't want this to fall off Active Convos without you knowing that someone has read your post.

Sorry about the typos, by the way.

The school or the LEA may well provide subsidised (or free) transport to get DS to the school, it's worth looking into. Are you able to learn to drive or are you a non-driver for medical reasons ? Is learning to drive a possibility for you ?

I am so sorry bunnyhops. Must be a dreadful shock. Maybe your ds will get the help he needs at the special school, though?

Bunnyhops pls pls it is nothing you did honey.
I have two kids, both parented the same,, dstalked in sentences at 12 mths but my dd is 3 and has very delayed speech, with therapy it gets a lot better, once your ds is getting intensive therapy he will improve.
You are ding the right thing by getting some help now
Good luck
xxxxxxxxxxxxxxxxxxx

Thanks everyone for your replys.
DS has been in reception since september and loves going to school and joins in although he has only said 3 words the whole time he has been there.
He has had 9 sessions with a SALT speciallaist and has said 1 word in all those sessions.

I have just looked up selective muteness on ythe net and they say it is very rare below 1% of children.He speaks in the home in single words but only those he can prononuce.

I could look into driving lessons or possibly we could move nearer the school if it came to it.Will have to wait until DH gets home from work to find out more although he did say he would have to go to this special school everyday.

I feel so guilty.I had PND and anxiety issues after my dd was born and I tried my best to keep my anxiety and tearfullness away from the children.DS is a confident little boy,very bright for his age and in situations with people he knows he will try to talk.So confused right now.
Am worried that DH will blame me as sometimes he was less than sympathetic with my PND and am still working through my anxiety issues and have come a lone way.
DS is my main priority and we will have to do everything we can to help him.

I know very little about selective muteness - but I thought the point was that the child chooses not to speak. You seem to be suggesting your ds has trouble speaking which may mean there is an underlying reason why he doesn't talk - for example verbal dyspraxia. I really want to emphasise that I'm no expert and am not suggesting this is the problem, but did the SALT rule out problems with pronounciation and actual word formation? Hopefully Mizmiz or one of the other SALTs will see this and be better placed to advise.

I agree so much with the others though that it is not your fault whatever the problem. I have one child with SN who struggles with everything and one NT child who is top of the class and breezes through life. I have brought them up the same - same goes for you - it is not your fault.

Thanks Saker.Verbal dyspraxia has been mentioned as he has a severe speech delay and only speaks a handful of words and has problems forming his mouth to speak others.I do not know whether verbal dyspraxia could also be linked with selective muteness.There is so much information on the net about both conditions and have been searching frantically for answers.His problem was picked up about a year ago and as yet have not had a diagnoises. The speech therapist referred him to a specialist in september as she was unsure what the problem was.

Thank you for your concern. xx

bunnyhops, sorry to hear you're going through such a hard time. Don't know much about this (got a DD with autism) but I do have a dear friend who has just been told her little boy probably has severe verbal dyspraxia. He is getting specialist input and making great progress. Don't panic about the journey- if he needs to go to a special school that is not in walking distance and he is still little I would have said he will almost certainly get a school cab, especially as you don't drive and you have another little one. Lots of loveXXX

Bunnyhops, my ds2 has oral dyspraxia among his other problems so his speech is very unclear and difficult for people to understand. He talks quite a lot at home but talks less to strangers and other children. Part of the reason for this is because he doesn't expect to be understood. I wonder if similar reasons would perhaps cause a child with speech problems to become selectively mute?

Ds2 is hopefully starting special school 10miles away next year. He will get a taxi provided. JakB is right, it is likely to be provided for you too.

Is he in the UK? He will get transport if he goes to special, school. ds1 goes to special school and the school (and transport) are fab!

You can't blame yourself. Speech and language is so complex.
3 out of my 4 have needed speech therapy, so don't worry about your dd needing it too.

At the moment you probably are shocked but hopefully he will get a place at a school that will be right for him.

Thanks for the kind replies.
The thing about ds getting a cab to the school I very much doubt he would go in the cab without me,he would get distressed.

DH came in from work and said the speciallist was quite clinical when talking about ds's problems.DH said he did'nt really understand what she was saying when she said DS has selective mutism.Looking it up on the internet it states it is very rare,less than 1% of children have it. It also says it is not connected with the speech delay and is a seperate issue.
Saker-What you said about your ds thinking he may not be understand is what it pointed out on a selective mutism website.
How old is your DS?

I am going to ring the speciallist tommorrow and get more detail from her and ask her to write a summary for me of what problems she thinks DS has.She had said to DH we are dealing with 2 seperate problems ,a severe phonological speech delay and selective mutism.I need to know if this is a diagnoisis or what it could be.

Bunnyhops, he won't have to go in the cab on his own, he will have an escort as well. My ds hated going in the cab at first but he soon got to like his lovely escort and now he runs out and jumps in his seat. In fact, she is babysitting for us on saturday night which shows how friendly it all is!

Thanks Pixel was unaware of that.I still have a lot of questions I want answering from the speciallist,it is so confusing all of this.Was shaking and felt really sick when DH told me what the therapist had said.Still don't know what to think.

Sorry Bunnyhops that you have had a such a shock. I hope you can get to the bottom of things on the phone to the specialist.

My Ds2 is 4. He has no diagnosis. He has motor dyspraxic type problems with his oral, fine and gross motor skills plus some social communication and language problems. Some therapists think he might be on the autistic spectrum - others think that his pronounciation problems etc have caused some of his general communication problems. It is very complicated and I have read up quite a lot but still I vary in my own opinion as to the reasons for his behaviour. However he definitely withdrew a lot around the time he started to speak and that seemed to be a lot to do with no-one understanding him outside the home. We have worked a lot on his self-confidence and I often translate for him but obviously this isn't ideal and I do feel sorry for him when he says something to someone and they give the "wrong" answer or brush him off with a "Yes dear". Who can blame a child for giving up trying to talk when it is so difficult and unrewarding? I am often surprised he isn't more frustrated than he appears to be.

I have to say though I am very relieved to be able to send him to a special school where he can get the help he needs and not have to struggle with a mainstream environment. Obviously different things suit different children but you might find that the special school would really help your ds. He will have more chance of getting frequent speech and language therapy than if he goes to mainstream. I would suggest going for a visit and getting a feel for the place.

Saker-Thanks for telling me about your DS.
It is very upsetting not knowing what is going on.My DH thinks the speciallist has'nt spent enough time with our DS to really make a diagnosis.I think in some respects my DH is still in denial.The speciallist actually thinks our DS who was 4 in August is still very young and maybe should have waited to go to school next year.But SENCO and the HV were pushing for DS to start this year.It is interesting what you said about your DS withdrawing when he started to speak and no one outside the home understanding him.My DS is in a class of 40 children and must be very overwhealming for him.
The speciallist has said we wait a few more months and see how he gets on in mainstream school.In the meantime they know want to change the group he was in at the clinic and he has just got used to the other children so may be more confusion for him.Also worry that he has settled in well at mainstream and will thren have to be pulled out of their to go to a special school next year.

He passed the CELF test they did with him with flying colours and the test was aimed at between 4 and 8 year olds.In fact they said it had been a long time since they had seen a child get so many 10 out of 10's.

It's all so confusing and I need some clarification,and from what I have read on the mumsnet posts from other mum's it can be a long process and a stressful one.

Bump

Hi Bunnyhops,
I cant give much advise, but all i can say is it is not your fault.
My Ds has severe global development delay and we dont know the cause, all tests clear so final stage is genetisist of whom we are awaiting to see.
Ds is almost 3 and doesnt speak, he attempts yeah, no and go but all very unclear.
He attends special needs nursery and although i drive and only live 2 miles away, he has transport to take him to and from every afternoon.
Dont know if ds will ever speak so now learning makaton!!!!!!!! Not easy when i am learning and trying to teach other members of the family!!!!!! Hope it all works out for you.
Butty.xxx

Thanks Butty.I just feel numb today and have so much stuff going round in my head.
Don't know what makaton is.Will look it up on google.It's just so difficult to know what to do. All mothers want the best for the children and when they are babies you just assume as they get older they will talk.I never even contemplated that ds would have problems,it seems so unfair at times.

You say your ds is 3,he must have got help very early on and his problem was recognised.Good luck with everything xx

My ds did'nt get any help until he was 4 but had all the usual HV checks so obviously was not picked up sooner.I blame myself for not noticing sooner,he was our first child so i was ignorant to the milestones a child goes through.
We watched an old video of when ds was about 20 months old and in hindsight listening to his babbling and trying to speak it was heartbreaking as he looks like he was struggling then.

Hi Bunnyhops, please dont blame yourself.
I only picked up on dylan as he was very behind with everything as he has physical problems also and it did help that i have an older dd to compare with.
makaton is sign language very similar to BSL and it is very daunting as so much to learn!!!!!!!!!
I pushed for help with dylan but as he also has learning difficulties it was slighty easier to get the statement at a young age, as he got it in may last year and has also been attending the special schools nursery since then.
Good luck with it all and dont be afraid to push with the pros in order to further the process, sometimes i think they need it!!!!!!!

Butty.xxx

Butty-I think you are right as far as pushing the prof to help.The school said at the start of term they would look into getting special funding for Ds in school but this has not happened.We think maybe one on one may be of better help to him so he does,nt feel intimidated by the other children that can speak.

Bump

Bunnyhops - did you manage to speak to the specialist on the phone today? Did you get any more idea what she thinks?

My Ds2 was 4 in August as well so he is almost exactly the same age as yours . We have kept him back a year at school but hopefully he now has a place at the special unit in the New Year.

I think you should feel really positive about the fact that your son did so well in the CELF test. It shows he at least understands what's going on and the speech can be worked on. I think my Ds2 understands less than he can actually say so we have the opposite problem .

Saker-Could'nt get hold of speciallist on Friday so will try again on Monday.
The speciallist thinks he should have delayed school until he was 5 but the HV thought we were neglecting ds's needs even though he was seeing a SALT at the time. She mebtioned social services and said we were in denial about ds's problems.So the SENCO visited and arranged for DS to start sept 05 instead of sept 06.

This was all done when Ds had just seen the SALT and she referred to a speciallist as she did not know what to diagnose.

The worrying thing now is the selective mutism and I understand it is a very rare condition and is hereditry.

Wondered if any one else on mumsnet has some experience with this?

Maybe I should start a new thread on that subject.

Bunnyhops - my dd (4) is selctive mute (not diagnosed but that is what she is!). I have posted threads about her. You could search for my name, also the most recent thread was this . There was also a thread in Special Needs called "Elective Mutism" which is a different name for the same thing.

Hope that Helps