speech therapists and makaton

[JJ]

I have a question about speech therapists and Makaton. My son (2 1/2) needs speech therapy. I don't have his report yet, so don't know the right words for what's wrong and he's getting reassessed here (in CH), but the person in London who assessed him very strongly recommended using Makaton with him. He responded very well to it during the evaluation and I'm going to continue it.. if I can ever get them to let me buy the books and video! The speech therapist I've found here has been recommended to me and one of my friends knows her (their kids are in the same class) and she sounds very keen and good. We haven't met yet, but she has already mentioned that she doesn't know a lot about Makaton and wouldn't do it with him. Is this a problem? I don't have a lot of choice in therapists, but could keep hunting around for more.

Thanks again for all your help here and previously.

Hi JJ, obviously you need people like jimjams and fio, not me, but just thought I'd pop in and say that if you're having trouble buying the stuff because you're not in the UK, I'll happily order them for you and send them on.

There are other choices. The idea behind using Makaton is to give language a visual meaning. My son didn't respond very well to Makaton (mainly becuase he can't gesture), but my friend's dd did. I think it IS important to use something visual when there is a communication disorder. Something like PECS is equally good, possibly better as it can be understood by anyone.

Did you see Davros' post on the speech and language assessment thread about seeing a developmental paed?

I don't think it would really matter, but not sure why she wouldn't do it with him. My SALT is really pro makaton and we use it with my daughter.

You can still use it though and just see how she pans out.

If you like I have lots of A4 sheets with all the signs on if you want me to photocopy them and post them to you just say.

I'll ask her what she does with that. And the assessor said that he did need to make language concrete (visual, like you say).

I am keeping a dev paed in mind, but am taking it one step at a time. I couldn't coordinate all the appointments in a short visit, unfortunately, so I did the easiest to book first. !! Not the best way to do things, I know. But she'll tell me if she thinks I need to go further.. right? Hopefully.

Thomcat, thanks! I'll try to buy the book and video, but will let you know if it doesn't work out. Tamum, thanks for the offer! I do have the name and email of someone here in Switzerland, but am still waiting to hear back from her.

depends. IME 3 different SALTs DIDN'T tell me it needed to go further. I asked one outright what the problem was and she said that wasn't her role to say and she just looked at what help was needed speech and language wise. She didn't tell me we needed to see anyone else though. Eventually as ds1 was approaching 3 one SALT DID tell me he needed to be seen by someone- but only after she'd spent 7 weeks with him. Not a very good record.

My friend didn't have a very good experience either. She went to Christopher Place where she was told it "definitely wasn't" anything to worry about. When it was - her dd is about as far along the autistic spectrum as my son. At 7 she is now verbal although not really conversational.

I think SALTS are good for giving exercises etc, but unless they have a real interest in communication disorders really not very good at spotting the bigger picture. Of course there are some exceptions. I think ds1's current private SALT would have recognised the problems but she has years of experience in an autism specific school and is taking postgrad qualifications in communication disorders, and goes to lots on it (she loves it for some reason- mad woman!)

It's really hard, and always much easier to see what the best route would have been with hindsight. Now I WISH we had been to see Gilly Baird- we so nearly did. But at the time the problems seemed to minor and with a dx of mild language delay it seemed as if we would have been making a big fuss out of nothing. Of course now I see that we were given the wrong dx, and wrong advice, and really the SALTS should have seen that. For some reason they didn't (although the problems seemed mild the lack of pointing should imo have been enough for us to have been told to get referred on).

I'm on a German Down's syndrome mailing list and know from that that they use a different simplified sign language (presumably the same in CH?), but some people are starting on Makaton. Maybe show her some of the stuff? It's so simple and very intuitive. You can buy the books with the signs in (quite cheap), or even video packs (pricey!) etc online - will post the URL later. don't use the Makaton web site for buying stuff, they're useless. Amazon do a Makaton nursery rhymes video which is really nice.
We use Makaton with great success - if you have a visual leaner who is eager to communicate it is just wonderful!

JJ - the first appt. we had with a SALT was when dd was 1 year and 11 months - she is now 4.5. I had asked my HV to refer as having already had one child I knew that something wasn't right. At that initial assessment the SALT referred us to the Paed.
Our DD has been dx with a speech and language disorder and the paed. and child pysch. have ruled out ASD. Dd has now been discharged from the paed. services, but from the ages of 2 - 4 years was seeing him every 6 months. We still see the paed. attached to the language unit that dd attends once a year.
I am so glad that we did see the paed. as it def. gave us peace of mind.
BTW we did try Makaton when dd was small but she wasn't interested as her speech suddenly came on. I think the only sign she ever used at about the age of 3 was for toilet. She learnt this at the SN playgroup that she went to.

Geekgrrl, thanks! If you could post the URL that'd be great. I'm having trouble finding somewhere to buy the books (the Makaton.org people are going slowly!).

Thanks for all the responses. Definitely food for thought. I'm going to wait until I get the report -- I think it might answer some of the questions. Unfortunately, I can't remember anything unless it's written down... so I might be getting it all wrong.

Jackie Harland at Ruth Jacobs Colleagues did the assessment. She was recommended here and I was wondering if anyone who's used her would know if she'd pick up if something else were going on. She seems like she would and did mention that it seemed to be solely a language disorder (she had him point at things and play with things, etc). He doesn't have any of the big warning signs of autism. She even saw a tantrum, so that was good, I guess.

My husband wants me to take him back to the ENT. Is there a dev paed that someone could recommend in the Harley St area? I will try to set up an appointment with Gilly Baird, but have heard that might take months.

Thanks again for all your advice. I really am listening to it and taking it to heart. If anyone would like to see his report when I get it (next week- but I'll be away then, so the week after), let me know. I'd love someone to talk it over with who knows what they're talking about!

here are the people I buy things from:
Winslow - they have a lot of material on communication and speech.

ho-hum - didn't work. try this

Hello JJ, sorry I missed this - we use some makaton and it has helped no end. I get my stuff off the makaton people and winslow are good too as geelgrrl says. Buy the Dave nursery rhymmes video it really is the best thing ever. We are sort of using pecs too whicvh is helpful

I got them! Thank you! They've all been ordered, except for the Dave video (I didn't see it but got the Nursery Rhyme Sign and Sing book....).

And and and, there's a woman out here who runs a Sing and Sign course (info on Sing and Sign ). It's for little babies, but my friend who found her asked her if she'd work with my son! (In addition to the proper speech therapy, not instead of..) It's "largely compatible with Makaton". That's ok, right? I'm very excited.

Thanks again. You guys have made my day.

JJ Amazon do the makaton nursery rhymmes video

HI JJ

It's good that she got him to point and play etc. The only reason I would be concerned is that we were also told quite categorically "it's only language" and now I'm not even sure what that means! If a child isn't learning language there has to be a reason. That could be developmental delay in all areas- which isn't the case for you, a physical problem such as hearing (so yes definitely worth seeing ENT) or a language or communication disorder. These include things like semantic pragmantic disorder. Knowing what I know now I think it is important to find out why a child isn't learning language properly so they can get the correct help early on (and its much better for the parent's mental health as well tbh). So I would say arrange to see a developmental pead- even if you do have to wait 4 to 6 months to see them. That would give time for any developmental problems to become more apparent anyway. And if ENT could be seen before then then you've covered that avenue as well.

I just know how much time was wasted with my son. Now he's having ABA (3 sessions so far) and I can see how well he is responding to it, I WISH we'd gone to see Gilly Baird when we thought about it. I think he could be in a very different place now if we had I feel we're starting the intervention 2 years too late.

Hi JJ, I would be very unhappy about an SLT who said she didn't know something and wouldn't do it without offering a reasonable substitute. What I mean is, it doesn't have to be Makaton (although i'd strongly recommend it) but she must be able to use signing of some sort.....
I think you should definitely consider Dev Paed as, at 2.5yrs even my son didn't show many of the classic signs of ASD, but enough to worry. There is a Pead called Paul Gringras who works part-time at the Newcomen Centre at Guys Hospital (with Gilly Baird presumably), he also runs a sleep clnic in Harley St and has a practice in North London. I don't have his phone number unfortunately but here's the info I have:

Developmental Paediatrics
Dr Paul Gringras
36 Keyes Road
London NW2 3XA
[email protected]

Is a developmental paediatrician the same as a paediatrician or more specialized? Sorry for such a silly question! I will try and call Gilly Baird and/or Auriol Drew .. have to find their phone numbers still, but might also try Elliot House in Kent? You guys also mentioned that one to me before. Thanks for the N London recommendation, also. Between the three of those, I should find someone.
...

ARGH. Have just spent half an hour trying to find a working phone number for Gillian Baird. If anyone has one, thanks!

Davros, thanks for that. I've got an appointment with her in a couple of weeks, but will keep looking for someone who knows Makaton. He did respond very well to it.

Fio -- it's been ordered! Thanks. Now I just have to get the VCR repaired.

(Have to go to school now to show new secretary how to use EpiPen and pick up son. Thanks for all the great and quick advice!)

Try 020 7955 4638 for Gillian Baird. I think its the number of the Newcomen Centre so you could also ask for Paul Gringras there. I guess he would have a shorter waiting list and he is highly respected.
JJ, sounds like you haven't got enough to do. WOuld you like to pop back to London and help with my cleaning?

JJ, a developmental paediatrician is one with a special interest/specialisation in development.
It's great that your son responded so well to Makaton being used. My dd had an uncorrected hearing loss for two years (she's finally got hearing aids that fit her now) as well as having Down's syndrome and using Makaton with her made such a difference. It meant that even though she couldn't hear properly and has a poor auditory memory she is exposed to phrases and understands sentences. Hopefully this will really help her when she is at the stage where she combines words.
She goes to a SN nursery now where they use Makaton constantly with all the children. It has really brought her on.
It might look a bit daunting at first, but the signs are mostly standard gestures and if your ds isn't going to be in an environment where they use the standard Makaton signs you can obviously adapt them to suit your needs.

Thanks again! I tried Paul Gringas, but he only does NHS assessments the woman said. (I have to go private -- am an American citizen residing in CH!) But she gave me the name of Dr Helen Wesley and I've left voice mail for her. The woman at the Newcomen Center was very nice!

Thanks greekgrrl! It's good to know how much it helps.

Davros, you really wouldn't want me to clean your house. I'd end up accidentally breaking all your dishes, putting things back in the wrong place and drinking all your wine.

My mom just sent me email implying that the best thing about speech therapy will be the extra attention my son gets. Yes, of course that's his problem. He just doesn't get enough attention! Bless her. I just emailed back saying that we'll be there for half the time we originally planned this summer.

Oops! geekgrrl, not greekgrrl. Sorry!

JJ, there's no wine left (until I go out to the shops!).
In a small way your mum's right!! Apparently its proven that all intervention works, probably due to the extra attention given to a specific issue, greater consciusness of the issues from parents ant others and a more positive attitude. BUT that doesn't last long term and of course lack of intervention doesn't CAUSE the problem in the first place iyswim....

You drank it all already? Just joking. I'm already on the g&ts. I get what you're saying about what she said, but what you are saying and what she meant are two different things. You're so sweet to post that though. I do have an emotional reaction to what she says, iyswim. There was waay more to the only coming half the time during the summer! But nothing relevant here, just the normal "me and my mom" stuff.

The reason I'm posting slightly tipsy is that I came across a great looking chocolate cake sans wheat in this month's Sainsbury's Magazine supplement. I think it's this month.. the supplement is titled "Chocolate". Jimjams, if you're reading this and don't have it and want your son to have an indecent amount of chocolate, let me know and I'll send it to you.

Completely irrelevant! It does look good and moreish, though.

Um, more sober post: thanks again for all your help. He's got an appointment with Helen Wesley (?) and Auriol Drew on 29 April. He'll see the ENT on 12 May.

My sister has, in her own way, sorted out my mom.

Thanks. I would not have done this or gotten the good speech assessment if it weren't for you guys. It really really helps me. Thanks.

Thanks again -- got the report from Auriol Drew last week. She has diagnosed my son with "a specific receptive and expressive speech and language delay/disorder". He's on the first centile for both comprehension and expression according to the Reynell scales. She did her assessment (a speech and language assessment) with Helen Wesley, a dev paed, who is satisfied he shows no signs of a social communication disorder (I haven't gotten Dr Wesley's report, but Ms Drew's specifically mentioned that he does not have an attention or thinking disorder - her words). She mentioned that auditory memory hadn't been tested.

But, unfortunately, she made a large issue of his tantrums (he had a big one there) and said it wasn't likely it was completely a communication problem but a "battle of wills". She did give me specific stratagies (numbers 1245 - 1247) for dealing with them, but, y'know, I feel like a bad parent. Such is life!

Makaton isn't the only signing system available, there's one called Signalong which is very similar, you may have more success tracking down resources etc.?