Worrying about ds - dyspraxic, possible dyslexia, maybe something else??

[dairymilkmonster]

Just looking for some reassurance really - even though I'm not sure it will be possible to find it!

DS1 is 7, just finished year 2. He has been a hard work child from birth (was 5 wks premature), although it's only since we've had ds2 that I have realised that.

School has been a total nightmare for the past 3yrs. He is at a local independent school - lovely school, not extremely academically pushy, very broad curriculum, majority of other kids live close to us etc. DS appears to love the school, has always rushed in enthusiastically and has lots of friends. We chose the school after not getting any of our 3 state school choices and not being keen on the option we were offered. We are very satisfied with the teaching etc - our difficulties are with ds himself!

DS1 has found writing & maths extremely difficult. He was slow to get going with reading but by part way through yr1 had caught up and now is a voracious reader of all sorts of children's fiction. His motor skills had always been poor and at the end of yr1 his writing was very basic still - and after some great advice from this board - we had him assessed by an OT. She said he is dyspraxic (DCD), but on the milder end. We got lots of advice, had some sessions for exercises, he has a special cushion at school, a 1:1 session with the SENCO weekly and an IEP. The school then felt his spelling was a problem (it is...he was routinely getting 0-1/10 in weekly tests despite us working hard on them all week) and difficulties with maths to do with visual ordering and cognitive manipulation of numbers. I might have remembered that wrongly! Anyway, they said he might be dyslexic - we thought this most unlikely as his reading is so good. Admittedly I know nothing about dyslexia!

The other side of the coin is that he is highly over emotional and very prone to tantrums still. He gets tired out very easily when other children don't. It is exhausting. Trying to do anything he doesn't want to do (getting dressed, going shopping, homework, bath) at that point is a complete nightmare. Homework (ie spellings or similar, he doesn't get much) is particularly bad and he often refuses to do it. The poor little thing finds life very difficult & my husband and I are running out of stream. I have been constantly worrying about what will happen to him if he can't make himself do schoolwork, achieve basic GCSEs, do things he doesn't want to do (like we all do!) etc in the uber competitive world we live in :(

GP thinks he is physically healthy - we agree.

On the advice of our GP and the school he has seen a clinical neuropsychologist for cognitive assessments over the past month. The aim of this was to see if there are any abnormalities in how his brain is working compared to the norm, inc dyslexia. She was also going to try and talk to him a bit about his feelings about life, home, school etc - we can never get much out of him. The psychologist is away for the next 3 wks on holiday, so we will get the results when she is back - I'm terrified!

Anyone been through this or anything similar with their dc? Any vaguely positive stories would be most gladly recieved at this point. DS does have good points - articulate, funny, amazing imagination, loves swimming - we just rarely see them. The few friends I have with similar age children all have bright, motivated, emotionally stable kids who are flying and don't seem to be able to empathise with our struggle.

Hi DairyMilk.

I can understand your concerns.

One of our twins (just 7) going into year 3 is dyslexic and struggles with spelling and maths. This is very hard work for him (and sometimes for us) and can be frustrating. He’s reading fluently and we’ve used this to show that when he sets his mind on something he will achieve (even if it takes time). We do lots of things that everyone enjoys (swimming, tennis, cycling, museums, reading up and answering questions on next terms topics at school, art etc) to take the pressure off and practice the weaker areas regularly (there is no point in making a fuss its times table o’clock) he also gets to watch a program of his choice if he’s done the other stuff.

There is a great book - the illustrated guide to dyslexia and its amazing people - that I would recommend.

Do all you can in a low key and regular way and - if you can - park the thoughts of GCSEs. There maybe other dyslexics in your family who have suggestions? Sending good vibes to your DS.

Thanks for your reply and the tips. I do need to worry less about the future!
Biggest trouble with getting DS to practice weaker areas is that he just makes such a huge fuss. We try and keep it low key but he ramps it up.
Hoping that the psychologist will have some more useful suggestions when we get the feedback from her assessments.
I will get that book!

Let me know if you live reasonably near Windsor or Petersfield as we've used an amazing therapist who helps with dyslexia, dyspraxia etc and you don't need a diagnosis to use him.

These have been useful for us:
Spelling:
a magnetic alphabet rainbow mat and letters (I know sounds unlikely)..
Chalk and board
When we do the spellings - we use the look, cover, write method, then mix it with the magnetic letters and writing on chalk
(Consistently getting the word correct 3 days before the test and daily practice gets results in the test). This takes time. I’m also going to try word wasp.
Maths:
UNO
Shut the box
Squeebles
Hit the button
Snakes and ladders
Have a set time or two times a day (no longer than 30 mins) that you do this and allow him to choose something he wants to motivate him.

You’re prob already on these DairyMilk. Good luck with the EdPsy.

The other side of the coin is that he is highly over emotional and very prone to tantrums still. He gets tired out very easily when other children don't.

DD2 is younger, just going into Y1 but has fairly marked dyspraxia and she tires really easily - when you see how far she walks in comparison with everyone else with how all over the place she goes (and she's got low muscle tone as well which adds to it) I can understand why. She also still seems to be at about the level of late threenager when it comes to tantrums a lot of the time - just about coming out the stage where they're tiny irrational drunks with PMT and it's the absolute end of the world because you cut up their toast wrong. In her case her speech was very very poor until recently so I assumed it was because she'd just about finally acquired the language skills to argue the toss a bit - but when she flounces out of the room with a list of woes inflicted on her by the world it's hard not to just think "fucking hell that's really clearly spoken" and take her seriously sometimes!

It gets very wearing and hard going though when they're not quite level with their peers and people don't get it - mine are on holiday with their grandparents this week and I'm missing them desperately but I really needed a break from trying to constantly figure out what's up and work on how to "fix" it, and the tantrums and emotional immaturity, and things being dropped and stuff.

Has dysgraphia been ruled out?

Pda?
Mine is like this about maths. Is hard to get to do stuff.
Whereas very good at reading. Maybe frustration at finding something hard.
I think now she reads easily there is nothing she can argue about. Whereas maths is feedback and she gets attention for right or wrong.

Thanks everyone. It's reassuring just to hear we aren't the only people out there struggling. I am just so exhausted! I work part time, but I'm a doctor so its quite demanding work plus on call overnight/weekends etc. I love medicine but at the moment a 'don't think about it outside work hours' type of job looks attractive. I've really slowed my career down to be there more for ds1 (and ds2!) and currently it doesnt seem to be paying off.
The only app (for maths, english) we've had any luck with is doodlemaths. I'm not super excited by it, but all other apps he starts, does a couple of times then has a fit when we suggest them again.
Haven't looked at word wasp or hit the button, will investigate those.
Thanks!

"Anyway, they said he might be dyslexic - we thought this most unlikely as his reading is so good. Admittedly I know nothing about dyslexia!" How does he tackle unfamiliar words when spelling and reading? Is he trying to recall words as wholes or can he break words into syllables and phonemes?
Often children with DCD have difficulty with sequencing and this can impact on writing. They struggle to sequence words in sentences and to order sentences so what they write doesn't make sense.

Hmmm sometimes just take the pressure off, gross and fine motor skills can be improved in many ways that don’t like link to school. Improve engagement and esteem - theatre, singing, model making, robot games there is something. The spelling might happen better later - it did for mine who struggled. And if it hadn’t well not everyone is destined to be a great speller ... important to value what they can do whilst the system tries to fit them to the exam rubric.

Does he behave like this at school too? My DS has visual perception problems which affects his ability to write neatly, makes remembering letter order in spelling difficult, and how to lay out maths properly which he finds very frustrating. At home we get tantrums, refusal to engage, running off etc. Awful! Complete little angel at school, even when he finds things difficult, he seems to contain his anger inside and wait until he does get a concept/ has tried to write / lay things out. I think they behave badly for us because they can!

Hello. Sorry to hear you are having a stressful time! Has your DS seen an Educational Psycholgist? We saw one for DS when he was 6 because we suspected dyslexia. She confirmed this and also gave a diagnosis for additional things we hadn't even thought of - dyscalculia (difficulty with maths) and sensory processing disorder. The SPD explained a lot of things - why DS used to go into shutdown or meltdown in overwhelming or stressful situations. Maybe something similar is going on with your DS?
It is great news that your boy loves reading! That is definitely something to continue encouraging and celebrating. If you are looking for something to boost his writing, Nessy is brilliant. It's an online package designed for kids with dyslexia. It is a lot of fun and both my DCs like doing it.

Hi. I have a 9 year old who sounds very similar to your son. OT says he has did (but not confirmed by paed as yet) and diagnoses of dyslexia, dysgraphia and ASD (Would be aspergers but that is rarely diagnosed any more). Has ASD been considered in your son's case? Demand avoidance can be a big part of Autism/aspergers (it doesn't have to be at pda level) and the refusing to get dressed sounds very familiar to me (Of where our son was at at a similar age).

This may sound a little harsh, and was a very difficult thing for us to accept, but you need to start to accept that he may never be like the other children you mention, that your dreams for him when he was born may not be the right dreams for you to have for him now and you might be trying to fit a square peg in a round hole.

That's not to say that you should give up completely or not try to help but you need to focus on what will actually help him rather than what he should be found to keep up with peers. That said I did recently got very annoyed with a specialist teacher who told me that I shouldn't be concerned if my son doesn't get any GCSE's. (With an IQ in the superior range I might hope he would get some!)

You sound very stressed and miserable your son does too. Go easy on yourselves. If getting him to do homework/spellings is too stressful/fruitless/pointless then take a break from them. If you reduced the demands of things like this then you should find that he becomes more cooperative when it really matters. This has made a huge difference for us.

With regards to writing, we have had to accept (it took us a vert long while) that D's handwriting will never be at the standard of his peers. OT has recommended he uses a laptop at school and is learning to touchtype. This is one of the few demands I am making of him this summer holiday. It's still tough going but I can already see the difference and he has a real sense of achievement. There is also a programme called clicker 7 that school could look into that helps with writing and spelling (I think it helps by predicting what you are going to write next).

I know this is probably not the kind of 'positive' story that you were looking for but I hope it helps. Take care.x

Hi OP my DS has dyspraxia and dyslexia please feel free to PM I understand the stress this can involve

Have you looked at Nessy?

It's a misconception that dyslexics can't read, generally they have a ceiling and can read perfectly well.
They just have to work harder

They also show signs of memory and slow processing skills so if someone is talking too fast they shit down and switch off, often day dreaming

Google 37 signs of dyslexia

Thanks again everyone for taking the time to write back. Apologies for not replying more quickly - seriously busy week at work & on-call.

Norestformrz - as far as we can tell DS doesn't really 'get' phonics. I think he has learnt to read by recognising whole words. He doesn't really understand decoding but can break things into syllables. The OT and SENCO have said he has sequencing difficulties.

Peppaminttea - we saw a neuropsychologist on the advice of our GP/ community paediatrician but will arrange an educational psychologist as well if required. I don't think he has ASD and no one else has suggested it. The logic for the neuropsychologist was to determine both his overall intelligence (ie are we just aiming too high here) and look into the psychological symptoms he experiences. Huge amounts of separation anxiety still, low self esteem and emotional dysregulation. The NHS wait locally to see paed neuropsychology (understandbly v specialist field) is approx 15mo so we arranged tosee the same consultant privately. We also paid privately for ds to see an OT re the dyspraxia on the school's recommendation. I doubt he would have fitted NHS criteria for OT. I think you are totally right that we need to adjust our expectations and work on boosting his skills and supporting him with his weaknesses. I just find it heart breaking to see the kids around him 'flying' (not to mention their proud unstressed parents enjouing their children) whilst ds is finding life tough and dh & I are exhausted and stressed.

I think the touch typing sounds a good idea - I will d/w school in sept.

Fingers crossed for the neuropsychologist to come back with some answers or possible avenues to investigate.

Scoutfinchmockingbird - ds1 is extremely well behaved at school, in fact he is very anxious about upsetting teachers. Gets anxious and upset sometimes but never ever cross, rude or tantrums like we see at home.

You mention your DS was premature, was it a traumatic birth?
Did he crawl? Did he bum shuffle? Did he walk early or late?

Many dyslexics can read but struggle with spelling, hyperlexia being one type. Don’t worry about spellings for now ( I hate spelling tests like this in schools for so many reasons)

The best thing to do is see an educational psychologist. Expensive but worth it if you find the right one. Do your research and find one who won’t sit on the fence with a diagnosis.

Remember that your DS feels safe at home with you and this can lead to the difficult behaviour at home. It’s hard but be kind to him, he is obviously finding life hard right now. He is the right age to get an ed.psych. report now so try to get one done. It will be a confidential document so share it! It’s up to you to share with the school etc so please do, otherwise it’s fairly pointless.

You will have a long road ahead of you but one way or another, he will be ok! Good luck.