Dyspraxia diagnosis. Books recommendations? And advice?

[123Magic]

My DS aged 3 has been diagnosed as showing signs of dyspraxia (well pre-dyspraxia as they wouldn't give a full diagnosis as too young) and I am keen to read up on the best way to help him. I'd be v grateful for the best book to read on it.

Also, as he's only 3 we are hoping to work with an OT to help him as best we can - kind of hoping as we have caught it early we can give him the best chance. Do you have any advice on what your children have found helpful and what we can do at this age?

Thanks so much!

My DS was diagnosed at five. I have lots of books but really completed reading any yet! I go to my local dyspraxia foundation support group who have been great for meeting other parents.

Ot has been the best help by far.

Thank you both for your replies. Polter - I will take a look at those files, I have seen you link to them on another thread (am a bit of a lurker!) but haven't looked at them properly so thanks very much!

2boysnamedR - re. OT, how much practice do you do (in terms of time spent and frequency) with your son at home (eg. 1 hour a day or something?). Am interested to know how much help is needed to make a tangible difference.

Anyone got any book ideas?

15 minutes every day was the OT recommendations but in reality we find it easier to do 30 mins a few times a week. DS also goes to gymnastics (I wasn't sure about this at first!) once a week and a theatre group once a week where he learns dances etc. All the OT stuff is very simple to do and I think will depend on what your childs issues are. Dyspraxia like most things is a wide spectrum and my son is hypersentsitive to some things and hypo to others. We do lots of strenghning things, fine and gross motor then sensory things to like deep pressure. Dyspraxic children grow into dyspraxic adults so your not looking for a cure, just ways to file off the rough edges.

What I mean by that is it's a ongoing life long condition so if you do x,y,z you can't make it go away - but you can most defiantly improve it. Then hopefully overtime they learn to adjust and it becomes less of a impact on them. I'm sure they must get less hypermobile after time, but poor muscle strength and coordination will not ever go away totally. Also for my son being hypermobile and having reduced core strength has resulted in pains and sprains so exercise is great for avoiding those aspects.

Thanks so much for your thoughts and insights Polter and 2boys. 2boys - yes, I'm just hoping to help him achieve as much as he can and make life easier for him in the long run. It's all a bit scary but actually it feels good that there are things we can do to help, having floundered for quite a while not knowing what was wrong.

Funny - it is the one diagnosis I don't have a specific book on. OT recommended karate, swimming and horseriding.

OT has made a huge difference to DS1. He also has special cutlery; bought him magic knives last year. Have given up on laces (bought alternatives). Heard an amazing speaker from the Dyspraxia Foundation talk this year and their website has some interesting stuff on.

My son was identified as having dyspraxic tendencies at the age of 4 (he's now 19). Most of the books by the main authors - Amanda Kirby, Madeline Portwood, Lois Addy etc - are good and informative, especially when you're new to the subject. It can be a little depressing though, as they do tend to drive home the fact that it can't be cured. They are written though about pretty major dyspraxia (like everything else there are degrees of severity) and my son's experience has never been that bad. It isn't easy, school can be tough and kids can be nasty, but with the help and support you'll be able to give it's perfectly possible to end up with a happy, successful 19year old about to go to university! So don't despair when the going gets tough. :)
Do all the exercises the OT gives you religiously to make sure you kill off all the baby reflexes. Play loads of games which involve co-ordination etc and spend lots of time in the local playground etc. Advice on equipment like seating/pen grips/non slip bowls etc etc and strategies (no peas without mash! ;) ) is all useful and you'll get some form the OT and there's loads more in the books and online. Remember there's a fine line between making things easier (velcro shoes, pull on trousers etc) and giving him practice at skills he needs to learn (depending on how severe the dyspraxia is). Make it easy at school and practice at home when there's no time pressure. If he's anything like my son the big thing he can't do is HURRY! Always leave yourself loads of time before everything, otherwise you'll spend your life stressed over trying to get him out the front door.
If you can afford it (£££), the Dyscovery Centre in Newport is very knowledgeable and supportive - though getting an appointment and waiting for a report takes forever. There's loads of info on the Dyscovery Centre's sister website boxof ideas too. As school progresses you'll want more of a confirmed diagnosis probably to back up your requests for support (the phrase 'minimal dyspraxia' haunted us for years as we tried to get help despite the fact that my son was clearly dyspraxic).
Also as he gets a bit older you probably want to check for vision issues with a full vision assessment with a behavioural optometrist. Similarly I'd recommend a Ed Pys/PATOSS style education assessment once he's old enough. We didn't do this until it was forced on us recently in order to get help at university as we didn't realise how much impact dyspraxia has on actual learning rather than just co-ordination and hand writing - it shares many characteristics with dyslexia and ADD/ADHD in this respect. The PATOSS assessment gives more information on which parts of learning are likely to be affected (frequently these relate to working memory and speed of processing) and can help you decide on what other therapies to consider whilst also making the school aware that it's not just physical. At this stage it's probably just the co-ordination info you're after, but a very interesting book as he gets older is 'That's the way I think' by David Grant, especially the first chapter. Knowledge is key! The time spent asking questions, reading books and searching the net is all worthwhile. Don't forget it's quite common to use the term Developmental Co-ordination Disorder (DCD) these days rather than dyspraxia when searching. Also loads under sensory integration that may well apply to your son.
HTH and best of luck.

Thanks so much bubbsjh, that's so helpful and well done your ds, he sounds great! On holiday at mo so Internet not great but I would love to write a longer reply and ask you a couple of questions, hopefully i will be able to later today or tomorrow.

I'll keep an eye on the thread - wish I was on holiday! :)

Hi Bubbshjs, I'm back online! Just wondering, did your son have undecided dominance (ie. no preference for left or right hand) as a very young child? DS has this and the OT has said we need to decide which one is his dominant one and go with it. Problem is he seems to use both equally (we did observation for a week and counted). If so, what did you do about it? I'm worried we are going to choose the wrong hand for him!

Is the Dyscovery Centre worth going to even if we don't live near Cardiff? Do you mind saying what you 'get' for an appointment?

Just one final question - did your DS get upset/frustrated very easily? My DS has a quite grumpy personality and someone we spoke to suggested that it could be linked to the dyspraxia and lack of ability to self-regulate. Just interested if that's your experience?

Thanks again for your helpful post!

Also, sorry just one more question for anyone really - DS's diagnosis was done privately, do you know if and how we can get any OT support on the NHS? Obviously it's all costing us so much at the moment!

My son swapped hands all the time and eventually the school decided he was left-handed and made him hold the pencil in his left hand all the time. We were never told by the OT to force him to chose a side and I wasn't happy that the school did that, but from what you've said maybe that was the right thing to do. I decided he might as well eat right handed as he seemed equally useless with most hands!!! My son is now left-handed, right footed and very unsure as to which eye. His vision assessment showed his left eye as weak. My son has hypotonia too though and the right footed can be because his left leg is actually stronger and more stable so he prefers to stand on that!

At 3, I think it's very common for children to be undecided as to whether they are left or right handed - in fact I'm pretty sure I remember reading that they tend to swap every 3-6 months initially.

For us the private/NHS thing got a little mixed up! We were referred through the NHS as milestones were being missed (he was put on recall at the 3yr check) but with school looming and a very long wait, we approached our GP who recommended a paed at the local hospital. We saw her privately and she immediately called in the OT who we also had to see privately for the first diagnosis/recommendations. Thereafter though the paed put us straight on her NHS list and we didn't pay again. However we didn't have any more hands on help from the OT - she wrote exercises for us and the school to follow and she checked on my son in school a couple of times over his primary education - so it sounds a bit different to what you're doing. With your OT report, I would have thought it was worth approaching your GP and finding out what the options are.

My son has always been of an alternating sunny and frustrated/anxious disposition. He used to cry and scream a lot and could be very disruptive in games with other children - all frustration showing through I think. He's also very smiley, has a great sense of humour and is very loving and loyal. I think you have to try to minimise the frustrations for your son as much as possible and try to keep things happy - easier said than done I know! Allowing loads of time so you keep stress to a minimum for all of you will make a huge difference. Making sure he's really well supported - you and the nursery and anyone else who deals with him needs to understand as much as possible about where and why he's likely to have difficulties - will help his frustration too. We worked on the policy that it was better he knew he had issues which was why things were hard and, although things could be improved, he couldn't change the way he was. As he got older we'd say things like 'yeah, dyspraxia's a real bummer isn't it, but let's just do the best we can' and he does have good acceptance of it now most days. OTOH though we always taught him that his difficulties didn't mean he couldn't do things (though we picked our subjects carefully!) - he was never allowed to use dyspraxia/hypotonia as an excuse, only ever as a reason (it's a fine line on occasions!). That was our take on the best way to handle it, others may think differently.
Don't under estimate how hard this going to be on you though too. I never went back to work full time (fortunately we could afford that) as everyday life was a hard slog for us as well as my son. I'm sure others have coped better than I did and gone back to work full time without any problems, but looking back I think having the extra time to give him was the right thing to do for us.

Will come back to you on the Dyscovery Centre once we've 'finished' as it were - but our experience is for a much older child any way so may not be representative of the service provided for younger children.

" Just wondering, did your son have undecided dominance (ie. no preference for left or right hand) as a very young child? DS has this and the OT has said we need to decide which one is his dominant one and go with it. Problem is he seems to use both equally (we did observation for a week and counted). If so, what did you do about it? I'm worried we are going to choose the wrong hand for him!"

My dd was undecided about hand dominance til 11 years old. I'd really query your OT's reasoning with expecting you to decide for such a young child. because I'm horrified

You should get NHS OT support via your GP, maybe even via your health visitor for such a young child. Like Bubbshjs, it's a long time since mine was that age and everyone ignored and dismissed my concerns until she was 10, dx by NHS OT at 11. Thank goodness awareness is so much better nowadays and young children are identified and helped.

Also, I've read that some schools and LEA's can be sniffy about private diagnoses and not implement anything they suggest, so if you can get an NHS OT on board before school, you may be better placed to get the right help, although you'll have to fight for every little thing, none of it just falls into place, so be prepared.

Most useful things we've found are the cutlery with an indent for the index fingers, move and sit cushion, writing slope, endless different grips for pens and pencils, velcro shoes, soft seamless clothes without buttons and zips, fidget toys, sensory calming colour change cushions, a plush slanket and cuddly toys, memory foam mattress topper and pillow, silk duvet etc. You may find a keyboard is necessary for him to keep up with the amount of written work that school expects, or a 'speak and type' gizmo, just depends how his hand praxis is when he's older. Later, kitchen implements with fat handles, the Oxo Good Grips range is great for poor grip, as are knives with a handle like a saw, kettle tippers etc. We have everything at home so it's done with the least effort and most comfort.

Kids with poor co-ordination tend to be better at single-person sports rather than anything in a team. Judo, horse riding, yoga, pilates and driving are among dd's successes. Archery and shooting are too much for her hypotonia.

All of the reports, assessments etc. concentrate on things our kids can not do, everything is presented so negatively, yet if you can steer them in the right direction and find something they can do, they can shine.

My son was made to choose a hand when he started school. He has no dominance but they said and it said he needed to learn to have dominance - so they choose right handed. I write with my right hand but swop my cutlery around! Ds still can't use cutlery. He is six

Thank you so much Bubbshjh, and also Tinted and 2boysnamedR for your really helpful replies. Feels like there is so much to think about at the moment and it's fantastic to hear of your experiences. Tinted - I'm very keen to find something like that for my son in the future, something that he can excel at. Interesting you said driving as I had understood that can pose problems for those with dyspraxia.

Re. the dominance thing, the OT said (I think) that undecided dominance can have a knock on effect on planning and sequencing other movement and play etc. and also the ability to cross the midline, and that's why it was important to try and decide. We wouldn't force him to do anything of course more gentle encouragement.