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(19 Posts)
DustyCropHopper Sat 09-Aug-14 00:48:12

I am not sure if this is the right place for this, not sure is dyspraxia is considered a special need, if not I apologise! Ds2 is 6, for 2.5 years we have been seeing a community paediatrician who sent us to an occupational therapist, who sent us to salt and a vision training clinic. The therapists have been brilliant, we have changed oc in this time due to maternity leave and 2 years on the second oc basically confirmed everything the original one had said 2 years ago.
Ds2 has poor motor skills, is on the verge of hypo mobility in his joints, his speech was immature, using me/him/her instead of I/he/she, failing to differentiate between male/female, struggling with verbalising things that happened. At home he has tantrums (meltdowns maybe, not normal toddler tantrums). He doesn't recognise danger, for example he will go up to the hob and try to tip the saucepan to look inside, despite being told constantly of the danger. He can ride a bike, but tends to steer to the side he is peddling with so zigzags a lot. Other children seem to find him, for want of another word, 'different' or 'odd'. He doesn't seem to see social cues, so can be very full on with new acquaintances, he doesn't realise his own strength. The list is endless to be honest, or that is how it feels.
All along the oc have said they do not diagnose, but at the app yesterday with the paediatrician he said that he deals with ADHD and ads, which he doesn't have and it is up to the oc to diagnose and he could do no more for us, but we could get re referred should I feel the need. I pushed a little, as I am fed up with being given the run around, and he said well, yes, ds2 dies have dyspraxia and that that is what all the reports have said, but just have not used that terminology. I actually do not know why I am posting here, maybe I just need to get it all out. I have known since ds2 was young that this was probably the case, I asked for help when he was 3.5, but now I am at a loss, feeling confused. He is the most affectionate little boy, eager to please when in the right mood, but when he isn't he does not hold back. He is, though, very well behaved at school, but comes home like a coiled spring ready to release so I get it all.
The school are meant to be arranging for a specialist teacher to see him, maybe the ed psych and the ot plans a school visit. Is there more I should be doing?

tannevic Sat 09-Aug-14 14:36:32

Hi. I understand where you are at! My DS (now 10) has severe dyspraxia/dyslexia and like your DS2 is an absolute Angel at school and as soon as he gets home all hell breaks loose! This is apparently normal. He is tired and frustrated as he has tried his hardest at school all day and needs to unwind. Home is safe and he is loved and fears no recrimination. Ask to see the SENCO at school and sit down with him/her and your DS2's teacher and talk about what is going on at school and how they can best help him.Get hold of a copy of a book called Dyspraxia, The Hidden Handicap by Dr Amanda Kirby it gives great insight into what dyspraxia is and how parents/carers and schools can help. Get the SENCO/teachers to do the "experience what it feels like" (in the pre-school section). It certainly put everything into context for me and his teacher. Ask if they can give him "time outs" so he can walk/stretch his muscles, a writing slope helps with handwriting, and there are special cushions to sit on which help to balance body core. Ask the OT's to do the dyspraxia (DCD) assessment and see how he scores. It takes about an hour to two hours, involves ball skills, balance skills and sorting skills. This will give you a clear understanding of his strengths and weakness. Hope the above is helpful but most of all dont give up. Its taken me 5 years to get a proper diagnosis (which had to do privately in the end) as was told by school its because he's ambidexterous!

DustyCropHopper Sat 09-Aug-14 16:06:33

Ds2 is ambidextrous too, but stronger on his left hand than his right, but is right eared, eyed and footed if that makes sense. He also doesn't cross his midline, so working on that at the moment. He has the cushion, has been using that for a year. He had a special pencil grip (claw grip or something) which I sourced on advice by the ot, which then 2 got mislaid and he didn't use for ages. After Easter, the SENCO provided a new one, but after a few days the teacher said he was finding it hard to use so they stopped using it. The SENCO is going to insist they use it with him next term, saying it takes a good while for it to make a difference and they should have persevered.
The OT also said something about him having low sensory something, meaning his attention fades quickly, so recommended that if he woke up like it in the morning to get him to do some running races or something to stimulate him. He gave him a pillow that vibrated to hold/play with in the session when his attention dropped. The SENCO did talk about getting one or devising some sort of plan for such times at school as the TA who worked on his table mentioned that he wasn't listening in class, not talking just switching off, so missing lots of important things.
Thank you for the ideas, will speak to the school in September.

Flumpf Mon 11-Aug-14 13:45:57

Just wanted to say hi really. Looks as though my ds2 has dyspraxia as well. Delays in his development were picked up at his 2.5 year check, and he is now almost 3. He also has a hearing loss. He has been referred to speech therapy. I didn't realise anything was wrong until the 2.5 year check, now we've been over loaded with information. Waiting for appointments is very frustrating. Sorry, just needed some where to talk a little bit.

DustyCropHopper Mon 11-Aug-14 23:52:00

Hi Flumpf. Don't apologise, my post here was for the very reason that I needed to talk too. I knew for a long time that something wasn't right with ds2. I approached my health visitor at 3.6 years after the pre school queried his hearing, which he has had marginal glue ear but didn't affect his hearing until a couple of months ago, but has now cleared itself. I knew hearing wasn't the problem so outlined my concerns to the hv. We have attended countless appointments over the last 2.5 years, but to have a name is starting to help I think, I know what I am dealing with, why he is like he is. That said, I do not excuse any bad behaviour, he still has to know right from wrong.

Flumpf Sat 16-Aug-14 08:39:38

Yes, we have just found out that he has glue ear as well. The ENT consultant gave us some balloons, which he has to close his mouth and one nostril, and blow up through his nose. Then he has to swallow. When we got him home, we found that there is no way he is able to understand what to do. It looks like we are going to have to have grommets. DS also has weak core muscles, so he is getting no signals what so ever when it comes to potty training. It just feels like everything is going to be a battle at the moment, but we'll get there. smile I agree that boundaries still need to be in place for behaviour. We seem to be lucky in that we don't appear to have behavioural problems. Does everyone struggle with the potty training?

2boysnamedR Mon 18-Aug-14 00:12:01

I have a dyspraxic child ( maybe two but my toddler is still Undiagnosed).

Sounds like you have a great senco! I have been fighting for years for a diagnosis and now a statement.

I feel dyspraxia is very much a sen as it's a neurological and physical condition.

orangepudding Mon 18-Aug-14 09:48:06

My six year old DS also has dyspraxia.

Flumpf, my DS didn't potty train until 3.9. He just wasn't ready before then.

Flumpf Mon 18-Aug-14 11:16:56

Thanks orangepudding. smile How are things in general now that he is six?

orangepudding Mon 18-Aug-14 11:51:30

I knew from 2 something wasn't quite right but didn't know what. Was told the usual 'he's a boy, boys are slower than girls'. His speech was delayed and at 4 I realised how badly so refered him to a SaLT.

His year one teacher noticed something wasn't right so got the SENCO involved who recognised dyspraxia. I took him to a private OT who confirmed it, now need to take him to a pead for an official diagnosis. His SaLT diagnosed verbal dyspraxia a few months ago.

He always seemed a bit quirky. Now at 6 the fact he has SEN is more obvious. At school he is struggling in most areas. He can barely write, can only read a few sight words as he can not blend phonics, can not count to 20 but can memorise whole books and remember facts in subjects that interest him such as science. Though he can't really read he has good comprehension skills. He is a really mixed bag!

He is a lovely and very funny little boy amd I wouldn't change him but would like to make things easier for him. The school holidays have been great as he has really relaxed.

Flumpf Mon 18-Aug-14 12:49:46

Thank you for sharing. I think that we are going to be in a very similar boat in a few years. He sounds similar to my ds, in that he is very loving and funny. smile

I had no idea, but delays in his development were picked up at his 2 and a half year check up. I have spoken with the SENCO at school, and we have someone coming from the hospital every week to give us activities to help him, and try to work out where he is in his development. We are going to be doing a 6 week course in September, I think that this is more activities for him to do. We are also going to be doing speech therapy when a placement is available. He has glue ear on top of all this.

It's all so over whelming.

Flumpf Mon 18-Aug-14 12:51:39

It sounds like the school have been quite helpful and supportive as well?

orangepudding Mon 18-Aug-14 13:06:12

Once the school realised the problem they were helpful. Your son will be going in to school with a diagnosis which will make a big difference.

We have just applied for an EHCP which means we can get more support for DS in school.

Flumpf Mon 18-Aug-14 13:20:04

We still need to get an official diagnosis, as we haven't seen a paediatrician yet. Good luck with your application for more support. smile

DustyCropHopper Tue 19-Aug-14 23:20:20

Ds2 seemed to crack the potty training at just before 2, but after a few weeks went backwards and for 6 months we had daily accidents. They did improve but even now, at 6, he only seems to know he needs the toilet when he is quite literally bursting to go, he also struggles to make himself go unless he actually feels he needs to iykwim, so I can send him for a check up before leaving, he can't go, 5 mins down the road he is holding himself, wriggling and asking for the toilet.
Ds2 lacks a visual memory, so he can see the same word over and over again, but not remember it. He can blend very simple 2/3 letter words but nothing longer. It took him almost year at school (he just turned 5) to learn to write his name. He does have a good imagination though and loves dressing up (to the point of obsession). I know this does not fit with dyspraxia though, except for him it isn't really pretend, he believes he is the character. I caught him yesterday tieing a piece of rope to my washing line, tucking the line down the back of his trousers and climbing up the slide to fly like Peter Pan did in the panto we saw. He keeps me on my toes for sure!

Flumpf Wed 20-Aug-14 17:27:27

Thank you Dusty. smile It is helping me to know where we are heading.

orangepudding Wed 20-Aug-14 18:18:44

I recognise a lot of what Dusty has written. My DS also took a long time to learn to write his name, even now going into year two he can still get it wrong on occasion. Also has problems with blending. DS also has obsessions too, his current is Pokemon and he really believes he will be a Pokemon master when he is 10!
Dyspraxia has a wide spectrum. Children with Dysparxia can really surprise with what they can and can't do.

DustyCropHopper Fri 22-Aug-14 00:01:49

Ds2 still struggles with his name, his letter formation is all over the place but he tries and enjoys putting pen to paper, which is positive. The sad thing is he really doesn't seem to like school. He has already started saying he isn't going back to school in September.
I think I sometimes read the signs/symptoms of dyspraxia and can see how ds2 fits a majority of them, but then when I send the ones he doesn't fit I think, maybe we are wrong, but deep down I know they aren't, just that he is ok with some but not with others.

nonicknameseemsavailable Fri 22-Aug-14 12:05:30

argh wrote a long reply and my internet crashed!

right in a nutshell DD1 is nearly 7 and I am pretty certain she is dyspraxic but compensating for it to a large degree and that these coping strategies she has come up with are starting to fail her because she is suddenly getting worse. She has been diagnosed with a specific word finding difficulty which affects her speech and her reading (especially words over 4 syallable if she doesn't know them by sight, when she tries to sound them out the sounds come out in the wrong order or the wrong sounds and she knows they are wrong because in her head they are right she tells me) she substitutes words with others from a similar area so door for window, brother for sister etc.

we are starting to now see evidence of motor planning problems in general (the speech problem apparently comes under motor planning according to some SALTs) like her trying to put her head on my knee the other day but ending up with her feet there instead. She is exceptionally bright (I started with a WISC test privately because i wanted to see about her memory and processing speed, I thought she was dyslexic as well but apparently not, hadn't considered dyspraxia or language problems at this point) and has an exceptional working memory yet some things completely fail her. she struggles with the basic dates they have done in history at school, she struggles to understand some extremely basic concepts and when I asked her to stand on the grass because a car was coming you would have thought I had asked her to fly in the air or something she looked so puzzled by the instruction. she can't do left and right (although she could when she was a toddler which is why I wonder if she is just too overloaded to cope), she CAN be very coordinated but equally can fall over air, she is good at ballet and has good balance for her age, can hold a knife and fork beautifully but is a very messy eater for some reason we haven't yet worked out, she can hold a pencil perfectly and CAN draw amazing pictures and other times they look very basic, her handwriting CAN sometimes be readable but most of the time looks, well, not quite right and she finds it very difficult although she has great ideas. She is very inconsistent I suppose and unpredictable with what she will understand and won't or what she can and can't do. falling off a chair is quite a common one too. she was sat on the floor yesterday and somehow suddenly hit her head on the floor, no idea how 'it just happened' apparently, I was there looking at her at the time and she didn't faint or anything like that, she just somehow landed on the floor from a minor arm movement.

Of course she is managing to pass the ABC test and all that sort of stuff so noone is interested but I am not going to sit back and let them dismiss her problems just because she CAN compensate, I refuse to wait until she crashes completely before doing anything.

It is interesting how I keep reading that dyspraxia has a huge range and yet the NHS seem to only diagnose it if they get below 5th centile on the ABC test which is ridiculous.

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