dyspraxia support thread - to share experiences with dyspraxia

[tinkbig]

hi my dd1 is 6 years old on Monday and has dyspraxia (developmental)

it is very hard work

she has trouble with the following :-

dressing and undressing - buttons and zips
gets shoes on the wrong feet
writing - has very messing handwriting
has a loud shrill excitable voice
is very excitable and doesn't sit still
has trouble getting to sleep cant switch brain off
hates loud noises
has low pain threshold
has alot of tantrums - especially if she doesn't get her own way
finds it hard to organise and follow instructions
doesn't listen to no or much else
is a very messy eater and struggles with cutlery and is very fussy
wants constant attention especially from adults

have just ordered -

special caring cutlery
pencil grips
hand huggers - crayons and pens
weighted blanket and calming cd plus headphones - for night time

was diagnosed last week by paedatricain

[auntevil]

hello tinkbig
my DS is 8 - going into year 4. he was dx by paediatrician in between pre-school (brilliant) and his first primary school (still angry now!)
He has just had his SIPT (hopefully got it the right way around this time) test and awaiting results. After the first 3 hours of tests, the OT confirmed it was SPD, but is awaiting the second 3 hours of tests to be marked up and fully dx. Although it wouldn't have taken einstein to work out that he definitely has issues with some of the tests. Judging by the OT's 'amazed' look eyebrow that kept twitching .
He needs a high level of stimulation to get focussed.
He is probably the noisiest child ever.
hypermobile, with long limbs that never quite look as if he's in control!
marfans has been queried.
drapes himself all over people - so much so he could be classed as an accessory
all the usual suspects of eating, writing, dressing, organisational skills.
constantly makes noise. hates the quiet. constantly seeks interaction but doesn't recognise when to back off.
But
tries his very best at school - and works very hard
academically bright
is 'up' for any adventure - might moan, but no issues with change
sleeps
good sense of humour which is quick and sharp
everyone is his friend - he tries hard to fit in
is beautiful, fun, cuddly , loveable and mine - all mine!

[CherryMonster]

hi, my ds2 is 10 (going into year 6) and also has dyspraxia. problems with concentration and self esteem, sleep issues (would love a weighted blanket but cant afford one), never stops talking or making noises (even makes sound effects in his sleep) cant sit up straight, is probably the most loving child ever invented, and will talk to anyone (and everyone) he is wonderful and i have just found out that he has made sufficient progress at school this year, that if he continues the same in year 6 he should be fine to go to MS secondary.

[auntevil]

sleep has always been a confusing issue for us and paediatricians. DS doesn't have any issues as such - apart from always trying to get an extra half hour out of us which afaik is a NT trait. This morning it was gone 8 when he got up - he is chronically lazy. snores like a trouper most of the night, so i know he's not faking it and is actually asleep. He talks in his sleep - can't even be quiet then either .
Purplepidgeon as was - purple something else now (somebody help with new purple name please) makes weighted blankets - so they might be cheaper for you cherrymonster. It's worthPM ing her to ask prices, when i can find out her new name!

[auntevil]

just been informed on the friday night thread that it is purplepidjin. might be worth a try cherry?

[tinkbig]

thankyou ladies

re weighted blanket mum bought only lap one was £35 others to expensive!!

re positive things with dd1 -

she is very bright
has an above average reading ability
is very confidant with everyone
makes and has lots of friends
very funny
very loving

[Chummybud1]

My son is 12

Still needs help to dress, can't put clothes on in right order, can't do buttons, zips, laces.
Very messy eater uses caring cutlery which helps a lot
Needs help with washing, teeth brushing and is sometimes messy at toilet.
Needs help to run bath and wash his hair. Always puts shoes on wrong feet.
Has no concept of time, saying in 5 mins means nothing.
Has problems crossing roads, judging cars etc.
Gets disorientated in strange places.
Can't go to shop cause he muddles everything up and can't count money.
Hates loud noises, busy places and freezes solid when he feels over whelmed or frightened.
Will do anything any adult tells him cos he thinks they are right.

His handwriting is shocking, he is bad at Maths.

He is bad at nearly every PE activity and can't ride a bike.

He paces continuously day and night, only sits at peace if in computer, he twitches and fidgets alwAys. He goes into own world and is oblivious to all around him. He wanders during the night

He worries excessively and has to check things over and over. If he can't find something he will look till he does.

So that's the hard bit

My wonderful son is handsome, he is funny, very funny, he is brave, never complains or gets down about his difficulties and gets up everyday and gets on with it. He does not take others seriously and laughs off any bad comments. He likes company but also likes his own company so it doesn't care when his friends go off to do sports. He has the most amazing imagination and writes wonderful stories, he loves acting and comes alive on stage. Oh and he still gives me hugs.

[tinkbig]

chummy - that must be so hard for him and you

[Chundle]

Hi all can I ask what your dc were like as toddlers/age 2. Paed has said dd2 is 'quite dyspraxic' she had bayleys assessment done and gross motor skills were quite far behind her fine motor. She's clumsy and falls over a fart! Also has speech issues. So just wondering what your kids were like at 2?
Cheers

[Chummybud1]

Sometimes it is but not always and not every kid is as bad as him.he is the worst case our OT has. On ther hand I wouldn't change him because it's him who has made us all who we are as a family etc and we have a really happy life cos we know what's important. And there are people who deal with much worse.

I started a thread after reading this one and I thought it would be a good idea if we all posted tips to help each other. Have a look

[elliejjtiny]

None of my dc's have dyspraxia but I do. Hope it's ok for me to join in.

[Chummybud1]

Omg of course, I dont know Amy adults who have it and would to hear how life was and is for you, it might give some insight to my son,

[BlackL]

Hi, my son is 6 and suspected to have dyspraxia/DCD. Hes getting assessed next month.
He struggles with

buttons and zips
gets shoes on the wrong feet
writing
has ants in his pants but low muscle tone so tires easily
sleeps no problem
hates loud noises especially hand dryers, alarms (wants to be a fireman but terrified if the smoke alarm goes off as a result of my terrible cooking)
huffy (just like moi)
finds it hard to organise and follow instructions
always needs to know whats going on next
listening and concentration poor
always demands attention
struggles with reading
sensitive
Struggles with balance, co-ordination (riding bike, scooter etc too)

on a positive note he is the most sweetest, generous child i know (not bias, honestly) He is very bright in so many ways. Logically minded. Hes caring and affectionate. He may have some struggles, but they make him who he is.

[BlackL]

Hi chundle.
At 2 DS had a stiff and awkward walk and run. His speech was delayed although this has improved greatly through plenty of OT support. He was clumsy (improved greatly when we realised he needed v strong glasses). His gross motor were the real give away particularly when climbing or walking. Some other common signs (not in my case) would be not crawling, late walkers, etc.
I know its easier said that done, but try not to worry about it. Kids develop at different rates. Work on the areas your child struggles with for now and see how it goes. Try and get an OT referal, to be honest a good Occupation therapist is worth their weight in gold.

[Ben10WasTheSpawnNowWeLoveLego]

Yep another one here with a 6 year old with all of the issues mentioned about although very poor at socialising with peers etc (so being assessed for ASD) as well.

Things have got much better for us once we were aware that he was not just being lazy/irritating/naughty etc with the behaviours as we have learnt lots of strategies to cope. :) Will post more later

[Chummybud1]

Hi there thought it would be good idea to put tips that I use to help my son. I started new thread but no replies so thought I would post on here as I would love to hear others tips.

I lay all my sons clothes out in order that he has to put them on, minimum buttons and zips. I buy elasticated school trousers but sew a button on front so they look "more grown up"
I only by Velcro shoes, not only avoid lace eps but easier to know which foot he should put them on.

I blue tak his homework to the table and we use PEN AGAIN pens, these are great.

I use antislip mats for his dinner plate and use caring cutlery.

When he is watching tv or on his computer I make him sit on a fitness ball as this helps his balance

[Ben10WasTheSpawnNowWeLoveLego]

I love the penagain pen Chummy. Might have to buy one for myself as I have hand problems. If it works for DS that is a bonus! I think I will also retrieve the anti slip mat from the car to try out for dinner. Thanks!

[Chummybud1]

One of my sons biggest problems when he was smaller was he would not cross his midline, so we used to put a sweet in one pocket and get him to retrieve it with the opposite hand. This worked great.

[Chummybud1]

Ben you can buy them on amazon. I don't usually buy things like this but these work, they force the hand into a tripod and also take the weight of your hand so less tiring. You can also get pencils for younger kids.

[auntevil]

Trying to remember specifics at 2 - seems an age away! I was with a post natal group that all had girls, so DS was always developmentally behind and we all accepted that . Speech was a problem, he couldn't understand why we couldn't understand him - it was our problem, not his.
His photographic memory was very active - he could only use single words, but wouldn't call a car a car, he would name it by make or model.
Physically he was very tall, very slap dash in games in comparison to friends. he would accidentally barge people, push people - but there was never any sign of frustration with it, it was as if he didn't know he had done it.
Missed all the milestones - and at that age particularly potty training.
He started pre school at 2.3 and it really helped with his speech as others had to understand him for him to get what he wanted.
They worked hard on immature fine and gross motor skills and followed SALT advice to the letter.
Early input is so important.
A suggestion for helpful things is the out of sync child book - but also the out of sync child has fun - the companion book. Tons of very cheap ideas to improve skills - that as a 2 year old would seem really fun.

[tinkbig]

very interseting

when dd1 was 2 speech delayed not very physical cant remember much else

tips that i use for dd1 -

use school dresses that pull over head or with zips help her get dressed
she has a blanket and sleeping bag at nite

have bought caring cutlery , pencil grip , hand huggers , weighted blanket and relaxing cd plus headphones just waiting for them to arrive

[elliejjtiny]

I remember struggling a lot with shoelaces and I still struggle with left and right. I'm very disorganised and have to write lists for everything. I'm a bit envious of all the support dc's with dyspraxia get these days. I got some group physio between the ages of 7 and 10 and then nothing until I was 19 and at university when my mum and dad paid for an ed psych assessment.

[Chundle]

Thanks guys very helpful

[lifesamerrygoround]

Hi, can I join? DS got diagnois of DCD yesterday :-(
OT told me there is a difference between DCD and Dyspraxia but seems very similar to me.

[Chummybud1]

Hi as far as I know Dcd covers kids who have most or all dyspraxic symptoms, but also have other related symptoms.

[3rdnparty]

hi my ds 6 (just starting yr2) had dx in feb has had 4 nhs ot sessions and back for review in Nov
v patchy support from school -stickers for fastest changer after PE if PE not hard enough already.... the latest tears session- the day after meeting with teacher and SENCO

Reading is ok writing poor
lovely, imaginative, chatty (loudly) boy has always been sociable but is finding things harder as the difference between him and peers more noticeable...but gets on well with adults
will be doing some shopping - think the wobble cushion may help posture/stillness and that penagain looks good..

sleeps ok but we have to be very careful at managing energy levels as nightmare when over tired,

he also always needs to know whats happening next...so I bought a simple blackboard wall sticker (think was poundland) but can also get on Amazon that we use as a diary for the week

also recommend Scoops app - free game as gentle one he can do also angry birds though its quite noisy!

am wondering if anyone any experience of ipad use as have wonder if touchscreen would be good or more frustrating..

Also anyone got any ideas for raising self esteem - he seems v fragile especially now back at school..