Got written report from Paed - more worried about low muscle tone than speech delay

[susie40]

We have now had the written report following DS' assessment with the paed. DS has been referred on to the Child Development Team because of his extremely uneven development. One area of particular concern was "locomotor" - paed reckons he has hypermobility and low muscle tone, and in fact is further behind in that area than he is with speech. We had not noticed anything was amiss in that area but it would explain, for instance, his reluctance to give up his buggy.

Any ideas for things I can do to help him?

Ds2 has low muscle tone and hypermobility - he also has problems with co-ordination, motor skills in general although these things are all probably related. He also has speech and language problems. His speech sound problems are probably due to difficulty controlling his mouth muscles and this could be contributing to your Ds's speech delay.

There isn't much you can do about muscle tone although trampolining can help, and it should improve with age. How old is your Ds? It might be that the low muscle tone will go with other motor difficulties as it has done in my Ds2. If you find this to be the case the thing I would say is to try and get help from an occupational therapist as early as possible. We were fobbed off with being told that Ds2 was at the low end of normal range etc and now he is five and he really struggles with even basic things like eating with a spoon. There are a lot of activities that can be used to help with co-ordination, body sense etc and the earlier you start the better.

Sorry I am not trying to worry you and I know it is possible for a child to have low muscle tone without associated problems, but I do feel if I had my time again, I would have pushed for some OT help much earlier, and I would like to pass that message on in case it affects you.

Susie,
As Saker said low tome should improve with age & exercise is good, however the combination of low tone & hypermobility does mean that everything takes more effort & uses more energy than usual, our ds really struggles with fatigue.
It is a very gradual improvement, therapies have helped ds2.
Supportive footwear can really help & OT has been fantastic.
Hydrotherapy can also be good, ask your physio or paed, here the sn school pool is used by the physio's for their pre school children.
I still notice a decline in ds2's speech when he is tired, he just seems to get more tongue tied. But the improvement particularly in his fine motor has been great, gross motor not so but ds also has CP so wouldn't expect such an improvement

My DS (6 yrs, has high-functioning autism) had low muscle tone as well as speech delay and other issues, and addressing this problem really helped him a lot - I think the low muscle tone in his torso was affecting his posture which was affecting his concentration which was affecting his schoolwork etc etc.

Anyway, we mainly resolved this through OT/sensory integration therapy (initially 3x weekly for 6 weeks, then once weekly for a term, after which his therapist suggested a break which is where we are at now). Also weekly swimming lessons with a SN instructor, and weekly yoga with a SN instructor. And weekly trampolining too, for a term. This was a lot, but the results have really been worth it.

On weekends we tried to go to a playground or soft play center as often as possible (climbing frames being very good for improving muscle tone).

I hope this will give you some ideas - good luck!

Baglady - can I ask how you accessed all those things - do you live in London? Sensory integration therapy has been recommended for my Ds2 but the nearest private OT I can find is an hour's drive away. We are going to her once a week, but any more would mean him missing a lot of school plus spending a lot of time sitting in the car. I would love to find a SN swimming instructor also.

Saker, try your local sn school (with pool) some have swimming instructors who may be willing to do some private lessons.

Thanks for the suggestion - our special schools have been closed and been amalgamated and the new school doesn't seem to let the pool out at the moment.

Saker - you may not need an SN swimming instructor (though I agree it would be preferable). DS1 has just had a series of private lessons with a fantastic teacher who was very sensitive to his coordination problems and really got onto his wavelength. It has had a very positive effect on his muscle tone (probably more so than on his swimming ability ). You could ask at your local pool to see if they have someone similar -he was recommended to me by the leisure centre staff when I explained about DS1's possible dyspraxia.

Sorry - just realised - 'wavelength'

Saker - yes we live in London, even so it was not easy finding all these resources (and I only mentioned the ones to do with muscle tone - we are also working on language & social skills and doing biomed too!). Where are you based? I agree with the other posters that a swimming instructor does not necessarily need to be SN though I felt in our case it helped initially. For us the OT/sensory integration component was really key, and my sense is it is really worth the effort if you can access a skilled therapist. Let me know if you want more details.

OK, sounds like I am on the right track already with taking him to playgrounds etc, also he does a class at the Little Gym once a week. I had a close look at how he was doing when we were there yesterday and he is definitely behind the other children - although he did manage to do a forward roll unassisted for the first time much to his - and my - delight.

There was a leaflet enclosed with the report about an OT session I can book him into and I'll do that too.

Baglady - I'm in SW London, where did you find the SN yoga? Was the trampolining in a class or one-to-one? (DS is 3.5).

Thanks Sphil and Baglady. I am in East Anglia. I have found out that there is a SN session at a pool quite near to us with instructors present to offer advice so might try that although it's at 4pm on a Saturday which is getting late in the day as Ds2 gets pretty tired. I will also try ringing round to see if any of the local pools have instructors with experience of SN kids.

Baglady - I am really pleased with the private OT we have found, just a pity that it is a distance away. I'm glad you found it helped. I constantly feel I should be doing more at home but it is so hard to fit everything in - like you we have plenty of speech and language problems to work on plus we are doing RDI.

Sorry to hijack your thread a bit there Susie. It sounds like your Ds is doing well if he can do a forward roll unassisted. Ds2 could only do that if he was falling down the stairs . I would definitely give the OT sessions a try also.

Hi susie, ds1 has hypermobility and originally had low muscle tone, but in the year that we were waiting for a physio assessment his muscle tone improved loads.

His physio said that things like parks and soft play are the best that he can do for it, and he is waiting for OT. His speech has also caught up now, though he did had speech therapy for a while when he was 2, and then he couldn't get in with anyway after moving.
I also found that trampolining helped, and riding a trike. ds1 hasn't a hope in hell of swimming though, since his co-ordination is so bad.

If he is anything like ds1, it will make him very tired, and ds1 needs 13 hours sleep a night, and can't walk long distances even now he is nearly 5.

I would really try to get help with fine motor skills too, as although my ds1 has done really well with gross motor, his fine motor are very delayed. Things like jugglign with scarfs, drawing big pictures with chalk, a stick with a ribbon on the end to wave around, playdough to build up strength in fingers, etc.

Saker, are you anywhere near Ipswich? DS2 has sn swimming there.

We are near Newmarket - it's about an hour's drive to Ipswich, so probably a bit far for a regular session. Thanks for the suggestion.

Kelly, yes - DS does get very tired and sleeps like a log at night. I noticed particularly when we were on holiday with his cousins (similar age) that he got a lot more tired than they did and they could walk a lot further. Trampolining sounds like a good thing for us as he enjoys it - he hates the swimming pool, and although I have seen him pedal a trike he finds it too much like hard work to bother doing it for long.

Saker - the forward roll came after two terms of trying with the instructors very patiently helping him. They have a big padded wedge, and there are tape marks at the top of the gentle slope showing where to put hands and feet. Once he could do it down the padded slope he started to be able to do it at home on the floor too.

I'm hoping the OT session will address the fine motor stuff - scissors, pen grip, buttons.

I'd try your local leisure center then, ours does 1 to 1 sessions for trampolining. good luck.

Susie,

We did trampolining at the Central YMCA but I think it only starts at age 5 there (and age 7 at my local leisure centre!). This was a group, non-SN class and DS did well and really enjoyed it, but we are not continuing this term as we had some schedule changes and the time no longer suited. I'm looking for another class at a more convenient time. (anyone else find scheduling all this stuff to be a complete nightmare?!!!)

The SN yoga is one-on-one and the instructor comes to our house. She also happens to be an ABA instructor, so in addition to yoga she does 1/2 hr of Verbal Behaviour with DS. She is based in Battersea and might still have availability if you are interested. I found her through a referral on an autism Yahoo! group I subscribe to.

Everything we do is controlled by our muscles - eating and speaking too. If your child has low tone, then this will delay the mechanics of eating and speach.
Also its felt due to low muscle tone, that children are less able to move around and explore. Once again this can effect general milestones, slowing everything down. Thus, working on the muscle tone, which underpins everything else is crucial. Good luck..

An afterthought........... have you tried horseriding, perhaps with the rda? This stimulates all the childs muscles and helps with balance and co-ordination. Its also a very sociable experience for the child too, they have great fun which is key. My daughter makes noises/sounds on her pony that she just doesnt make in the house - she even signs to the horse!

Mulsey, yes, it seems to me that the low muscle tone could explain some of DS' fussiness over food and speech delay. He used to enjoy exploring all over the place but now he wants to sit in the buggy a lot, I think that when he was really little he didn't make the connection between physical activity and being tired and now he does. I tried taking him to football and gym classes in the afternoons after nursery as I thought we weren't getting out enough but he kept crying and saying "too tired Mummy". So we dropped the football and do the gym class on one of our free mornings.

Interesting idea about the riding. DS has been on a pony once at a children's farm and seemed to enjoy it.