General and verbal dyspraxia - does anyone have a child with the same issues as ours?

[HayleyK]

Our little boy has verbal dyspraxia (improving really well with speech therapy thankfully) and also we've just been given a diagnosis of general dyspraxia, although he is still very young (2 and 9 months). He took his first steps 9 months ago and is still very unbalanced and walks with a wooden type walk with his hands clenched in the air, he can't jump or climb stairs standing up. The slightest uneven surface floors him. He is slightly low tone but not enough to account for his difficulties. He doesn't have any cognitive issues or any behavioural/social issues and is extremely happy and verging on slightly too friendly to strangers!

We're at a child development centre, but they don't seem to have any other kids like ours there - any kids with his kind of difficulties tend to have cognitive issues. Likewise, we're at a speech and language nursery, but none of the kids have our boy's mobility issues.

So my questions are:

• Does anyone have a child like ours (i.e., has taken this long to get balanced walking, together with verbal dyspraxia, slightly low tone with no cognitive or behvioural issues)?

• The mobility side really worries me - has anyone with kids with similar issues had any amazing experiences with physio that specialises in this in London. Would be interested in knowing who has the best possible reputation in this field.

• Does anyone have any good advice for us??!! I'm really comfortable that we're getting great help for the speech, just the mobility that is worrying me loads...

Thanks for any help anyone can offer and sorry for the long post.

Bump for you. We don't have a dx but I think we are heading the dyspraxia way. She is 22 months and still bottom shuffling, she can stand against a table well but not alone.

I'm interested to know the signs of oral dyspraxia??? She has said a few words but not consistantly. What should I be looking for and wat does the SALT do to bring your DS on so well?

Thanks

We were just given a dx of dyspraxia last week after a visit to the paed. We are just waiting for the OT to see DS2 before we know to what extent.

DS walk very heavy footed, and falls over a lot. He can be stading still and still fall over

The Paed told us that the trampolining, swimming and riding bike will be very beneficial to his mobility.

Sorry not much help, as just "new" to this myself.

we dont have dyspraxia dx but do of hypertoni but obn the moblity side its very simiar sound ing to your son ,was told encourage softplay,swimming etc

ds is 3.9 now

I would have thought your ds has an extremely positive outlook if he only has mild low tone and no issues with muscle strength. A cognitively bright child can LEARN how to do things other children can do instinctively, through teaching and practice. It's the attention, concentration, short term memory, social and perceptual issues often associated with dyspraxia that in the long run are the greater disability, so if he doesn't really show signs of having great difficulties in these areas, that's great. 2 years and 9 months is still incredibly young. At your son's current progress, if you keep him very active and help him with climbing playground equipment, going up and down stairs, trampolining, pedalling tricycles, going up and down kerbs, walking on uneven ground, swimming, etc, etc, you will see him, gradually, getting stronger and more stable.

My ds1 has hypotonia and hypermobility, and has had to be taught how to do a lot of physical things. At 2 and 9 months he was extremely unsteady on his feet and hugely behind his peers physically (and with speech - but that rapidly caught up after the age of 3, as in his case this was just a result of the low tone/normal late development, not a long-term inability to work out how to co-ordinate his mouth muscles). He's now 5 and can run, jump, climb, skip and hop (the latter still rather hard work for him), he can climb and descend stairs on alternating feet, can pedal a bike (may be a couple more years of practice before he can do this fast enough to try without stabilisers, but nevertheless, he CAN pedal, albeit slowly!) and can walk along a narrow balance beam. He will NEVER be any good at sport, but he will be able to keep fit and enjoy himself. He is also extremely happy at school, as now he is getting older, he can excel at the less physical things in life, like reading, writing (again, his hand tiring out may be an issue, but he can actually write surprisingly well for a hypermobile 5-year old), maths and using your imagination!

I too have a DS with hypertonia and mobility issues. Has the softplay and swimming helped? Phoenix4724?

H x

asteamedpoater - I think you posted the same time as me what a positive post. It gives me hope for my DS future. He too walks very unsteadly and seems to just fall over his own feet he is 2.6. He has a tricycle with a parent handle but I cannot persuade him to pedal himself.

We are also waiting for speech therapy which we won't get until the end of the summer. Any tips for helping his speech would be gratefully recieved.

H x

Hi, Phoneix4725, is it definitely hypertonia (muscles that overreact to a stimulus) your son has, and not hypotonia (low tone muscles that react too slowly to a stimulus)???

Hi, chuckeyegg,

Speechwise, a few things helped my ds a bit: getting him to suck from a straw to help build up his mouth muscles (he finally worked out how to do this when I bought him a carton of apple juice and squeezed the carton so that he could feel the juice coming up the straw, thus working out that if he sucked, he could also drink!!!); getting him to eat raw carrot and other things that are hard work to chew (probably not a good idea if your child also has trouble swallowing and could choke on this, though!!!); trying to blow bubbles or blow out candles (getting his mouth in a neat O shape he found quite tricky, as his mouth muscles were a bit slack); and playing with an alphabet peg puzzle with him. He loved letters and numbers from a very early age, so had an incentive to learn how to make the letter sounds. That's how the speech therapist he saw knew he didn't have verbal dyspraxia - he may not have had enough muscle tone to put many sounds together, but he could say most of the individual letter sounds at an age when other children were still having difficulty with a lot of them! Once his mouth muscles were strong enough, putting the sounds together was quite easy for him, and after that his speech pretty rapidly sped up and he caught up with his peers. The speech therapist also gave us some "Mr Tongue" exercises/games to play with him - where the tongue sticks out of the mouth, licks the lips, looks up, looks down, etc, etc - again, because co-ordination wasn't really the issue, he didn't have trouble with these (unlike his younger brother, who can speak just fine but still can't work out how to get his tongue to stick up towards his nose when he pokes it out!!!).

I hope this helps a bit. The waiting for appointments is always the worst bit, isn't it?

My DS has low muscle tone.

Sounds a bit like my DD1 , now aged nearly 4. Diagnosed with verbal dyspraxia a year ago, but now also with general dyspraxia.

She didn't walk until 19 months and never appears clumsy or falls over, but she is EXCESSIVELY cautious to make sure that she doesn't fall, very bad on stairs, not good in strange places etc her run is very babyish and always with clenched hands

The real breakthough came when she saw an OT who specialises in Sensory integration - if you can find one I would highly recommend it - and the difference in the space of a few weeks was absolutely dramatic. Her confidence has soared and she is now very close to using alternate feet on stairs, has learned to hop, can jump over things and off steps etc - things I would not have believed possible a few months ago. It has been an absolute revelation. I should say also that she saw an NHS OT last year who didn't think there was anything wrong.....

The OT we are seeing also strongly believes that correcting some of the physical problems will impact on her speak, whicj I think has been the case. It's nota cure, but it is certainly a way of teaching the child to deal with things and make their life easier. Your son is probably of an age where he is becoming more aware of his diffiulties, like my DC ( last year scored age 4+ on receptive language but 20 months on expressive language) so it is all the more important to start some therapy as early as you can.
Sorry I am not in London so can't recommend our therapist but if you google sensory integration therapy you should get something

Thanks a lot to everyone for your suggestions and help.

We are doing so much softplay, swimming, obstacle courses, trampolining etc. etc. but the progress is still so gradual, but I think it is going in the right direction. We just started doing horse riding, which I'm opitmistic will be really helpful (and at the very least, he completely adores it).

Bubble2bubble, I think you're right that we need to do loads of sensory integration OT. We do half an hour a week as part of our boy's nursery and I try to do stuff at home, but I will try to increase this.

asteamedpoater thanks for such a reassuring post. It makes sense and seems to be working really well for the speech, so I'm hoping that it will have the same effect for the mobility.

I've got a list of things I found helpful for the verbal dysrpaxia speech issues if it's useful for anyone.

If anyone lives in London (we are in Swiss Cottage) at all, please let me know. I'd love to meet up with anyone with kids similar age with similar issues to our DS1.

Thanks loads again to all

hi just found this thread.

DD has hypotonia (poor muscle tone) , amongst a lot of other conditions including hypermobile joints, speech and language issues and i think she is dyspraxic (in th process of tryingto get this confirmed) she is now 7.

She has progressed amazingly since being unsure on feet/a late walker at 2.

Ok she still has issues but they are less obvious.

I, like you have tried all sorts of physical activity which she finds hard but if allowed to do it at her own pace (ie no badges etc)with understanding instructors she does enjoy.

She can swim a bit without arm bands (but took 2 years of lessons) but she loves going to a small safe pool now.

She is starting to run about/climb like other 7 years.

She does not enjoy riding a bike or a scooter so we are not doing those things

She does trampolining which she loves and horse riding. After 2 years of lessons she still has to have a leader for trotting but she really enjoys it.and i pay for a private lesson so she can have things tailored to her needs. (They do a lot of balance work )

at school, she is now able to control her pencil (but uses a special grip) but she does find writing hard.

What is fab about her school is that they do (gym trail) three times a week. It is a set of special activities that are designed to stimulate the areas of the brain that children with dyspraxia find it hard to use.
It is a fun filled 15 minutes just after the register. DD does it in a group of 3 and her progress at school has picked up this year.

her language (words she knows is almost age appropriate) her sentence structure again is ok. She does still have some understanding issues which require a personal explanation.

How do you find a school that does gym trail - it sounds great? Also sounds like the kind of school that does that is likely to be a good school generally in supporting a kid with these kinds of issues. Would love any advice on this. Thanks

Rather than one child with both Verbal and Motor Dyspraxia, I have DS2 with Motor, and DS3 with Verbal. SO I can't offer any advice re the two together, but hopefully letting you know how my two have progressed will give you hope.

DS2 (age 10, Motor Dyspraxia) did struggle for a long time - still has poor soocial skills, co-ordination, handwriting issues. BUT he has come so far since he was diagnosed at 6 - the local swimming club has lessons for children specifically with learning or movement disorders, and he's now swimming like a pro. That seems to have had a knock on effect on everything else - he can ride a bike now, for example. His walking is still quite odd (mostly tip-toe), and he still seems able to fall over nothing, but he's getting there. And he's a bright, happy boy. He's had a fair bit of Occupational therapy which has helped - but you need to be very disciplined re doing all the exercises at home as well as in the sessions.

DS3 has been having speech therapy since he was 3 - he's now nearly 7. Pre school, he was unintelligible although with a large vocabulary and very chatty - only I and DS2 could understand him. He was Statemented and gets 20 hours a week of 1-1 support, doing SALT-related games and activities in school. Now he's almost always intelligible - when he's tired or stressed it slips a bit, but that's all. His speech still sounds a bit odd - an outsider could tell something wasn't quite right but would be hard pressed to say what exactly.

Hi HayleyK,

Do not just focus on GT; look at the whole school and its ethos. Do they actually recognise dyspraxia within the school setting.

Having done gymtrail myself for several years now with DS I would like to add some general observations about it:-

Its usually done three or so times a week - at DS's school the parents are asked to attend this with their child before school starts so that they can supervise. This is in itself not without its own set of problems.

Its easier for younger children to go along with this particularly if the activities are varied often and there is an opportunity to mix with other children within the group. GT uses a mixture of fine and gross motor skills.

I have noticed as well that the older the children have become the more resistance put up from them re doing gymtrail.

What you certainly don't want is no feedback and a teaching staff member who whilst helpful sometimes, is patently not at all qualified to run it and only does what is recommended from the OTs crib sheet. An OT visits occasionally but tends to concentrate on the children who are statemented.

Re dyspraxia many schools are not at all up to meeting their needs and you will need to fight long and hard to ensure your DS gets the help he needs.

Thanks very much. I completely forgot to check back here and just seen your posts. I think I probably do need to start thinking about statementing, but I also want to really find great London mainstream school for kids with these kinds of issues. I think it would be good to find one that does gym trail and then see if they are good in other respects. Does anyone know how I find one that does gym trail?
Thanks loads

ds2 has dyspraxia with low muscle tone, poor posture, and various reading and writing problems. he was diagnosed last sept at the age of 7 yrs 3 months. he has been seeing OT since jan. his handwriting has improved dramatically since then. he couldnt write his name by the age of 6 which was why he was assessed. he didnt walk until he was 18 months, although all other motor skills as a baby were very early- he rolled over at 8 weeks, sat up unaided at 4 months and was crawling by 5 months. his speech was very early as well, he could hold a conversation by 18 months. he doesnt seem to have too many gross motor skills problems now, he can ride a bike without problems and has been riding without stabilisers since he was 5, however, he is very clumsy and does still walk on tippy toes if he is barefoot. my main concern currently is his (lack of) sleeping. he goes to bed between 8 and 8.30pm and can be up for the day anytime after 3am some days.

soory just caught up on this been down a bibic for few days

asteamedpoater

your right its hypotonia
and hypermoblity that ds has nd yep we got straw sucking sussed but still can not blow at all or talk and yep we got mr tounge as well ,

We just has coupledays of assessments atBibic and hes around 15-18 month level for gross skills and 18months-2 years for fine and hes 3.9 now

for him swimming has helped but it must be a quiet pool or he wont go in and yes I do think the softpl,ay has helped if nothng else when he falls means he does not hurt himself so much so gaining confidence

as for a verbal dx S*L not sure as ds speech is stillmissing at 3.9 only at 3-6 months level for verbal skills though he does sign now and receptive is at 18 months or so so she is writing to the paed to ask for more investigations .

but yes i do understand that its harder when seems that your child has bit of this issues and bit of that

ive found out on friday that my ds1 has dispraxia ,dislexia ive suspected there was somthing scince he was 19 month old he is now 8 yrs 10 months im happy and relived i know what it is but am feeling so low ,now ds2 aged 6 is being tested as he has behavioral issues,poor concentration,is under speach and laung ,the docs say it could be adhd but they have given me no inforamtion on any thing and i just feel lost sorry ...