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My toddler and possible dyspraxia - here we go again

(11 Posts)
2boysnamedR Wed 29-Jan-14 22:59:37

So as you might know ds2 has dyspraxia and after much faff he is currently being assessed for a statement. Toddler is very like ds2, clumsy, non verbal, won't engage in any activity like books, role play or anything really.

So he is under neuro disability pead - who agrees there are a lot if red flags.

I am waiting to see if he meets portage criteria and physio agree he's not right but won't see him again until neuro pead or we ask for it. I have been told today by some one he just needs a firm hand and it all come good. I am just so fed up of hearing that. I was told that for six years with ds2 and low and behold - it never came good. In fact it's all gone more horribly wrong than my worse case senario nightmare for him.

So am I being to negative? If I presume and treat the baby like he is nt is the best way to go? I am by presuming there's something wrong - making him non nt? I want him to be ok but how many red flags do you need to see before you have to admit it might not all just come out in the wash?

I just feel like history is repeating itself. Something in me has died in the last 12 months and I just can't act like its all going to be ok when my heart says it won't. No one understands. No one. I talk, people listen but the words just don't go through. The only advice I have had for ds2 has been wrong. The only person who was right was me. Should I just accept that maybe a baby under neuro disability peadiatrics could possibly have a neurological condition or try to be positive and presume a happy outcome and deal with my emotions once he hits three when delays will be more profound?

Why can't it just be ok that he's not 'ok?' That its not something I can just fix with a firm hand?

vorpent Wed 29-Jan-14 23:34:04

Hi 2boys, I feel your pain!

I too have ds1 with dyspraxia, and it's now looking pretty much a certainty that ds2 is similar. I thought for a while we might have dodged that bullet second time around, but no sad. It's so hard, isn't it, to be facing all the uphill struggles a second time around. I sort of know what's in store, whereas first time I lived in blissful ignorance of what fresh hell was just around the corner with each new stage.

I know what you mean about well-meaning people not really wanting to accept that your ds might have a disability. It's this instinct to try and wish things away and make everything alright, isn't it? So frustrating.

In terms of how to treat your ds, I guess most of the things you'd do if your ds2 was dyspraxic, wouldn't harm an nt child? I'm thinking here of the sort of activities recommended in 'the out of sync child has fun' book, for example. They're all fun, they'll benefit any child, I'd guess. I've found with my ds2, that although we don't have a diagnosis yet, the techniques that 'work' with ds1, such as deep pressure touch, also seem to work with ds2, so I've sort of fallen into treating him as dyspraxic based on what works. I'm not sure if this is right, really, but I guess we have to go with our instincts sometimes, if health professionals aren't disposed to help.

Anyway, brew, cake or wine and hugs!

2boysnamedR Wed 29-Jan-14 23:59:53

Thank you, I'm sorry your in the same position as me. I should really try the ot things like deep pressure on the baby. Never thought of that. Thank you

I had a meeting with school re ds2 and was told he will always find school hard. No matter how much I already know that it still feels like a fresh kick in the teeth.

Then I had this person saying its all simply fixed by me being more firm. I hope it's well meant but she never sat in a room with a teacher holding in tears while having your child's future and all your hopes and dreams crushed for them.

It's so hard doing this and being string and fighting for their future, fighting prejudice and people who haven't a clue.

I am fed up today. I never wanted to be in this position. I certainly don't want to do it twice. I guess the bonus is we are now "experts" so it should be easier this time right? I need a holiday and a stiff drink.

Thanks for your words. Tomorrow I be ok again I hope

vorpent Thu 30-Jan-14 12:43:28

Hi again, hope you're feeling better today.

Actually, I can't believe school had to be so negative about your ds2's future. It's their job to make it easier for him! What are they doing for him at the moment? Here are some adjustments that are really helping my ds1, for what it's worth:

- a quick walk down the corridor and back, every 15 mins, as advised by OT. I must say, the teachers tend to forget to send him, so now I'm pushing for him to have a timer and a sort of 'passport' so that he can learn to manage this himself. Watch this space.

- Touch typing rather than handwriting. Can't believe the difference this has made. Turns out Ds1 is not quite as thick as the teachers thought, now they can actually read his writing smile.

- working on a computer just outside the classroom. He used to get really distracted by the noise and movement in class, so for independent work, this has made a big difference.

I've found in general, that schools can really fail a dyspraxic child, not so much because of a lack of major interventions, but just because they are a bit clueless, and tend to assume they're lazy/naughty/thick. You've perhaps already found that you're the only advocate your ds has. I spend a lot of time nagging teachers, questioning why my ds has been put in detention yet again for 'not listening' (auditory processing disorder), and that kind of thing. It's exhausting and I hate it, but it's kind of working.

2boysnamedR Thu 30-Jan-14 12:49:05

Ds2 is only 6 so not ready to type. I do find that the school don't understand dyspraxia "oh he looks ok to me"

He is in the process of being assessed for a statement so my nag button is off for the next two weeks until the ep comes in.

Just thinking today - is this my fault? Has the way I brought him up made him dyspraxic? My gut says no but why do people keep telling me I'm just "doing it wrong". Feel as bad as yesterday.

vorpent Thu 30-Jan-14 13:15:43

No, no and no, there is absolutely no way you could possibly have caused your ds' dyspraxia. Banish that thought. In our case, it's really obvious that it's genetic. My dp was never diagnosed, but when we started finding out about it, it was clear that he's got it too, and that's where it comes from. Nothing to be done about that. Do you think there may be other family members who have it? If both your ds have it, I feel it has to be from a genetic cause, surely?

I can't believe people are telling you you're doing it wrong either. I have to say, no-one's ever said that to my face, although I do sense the way people are judging me, daily. Tell them to keep their opinions to themselves. Life's too short smile.

I try not to see it as altogether a bad thing, anyway. Both my ds have fantastic qualities, some of which I think come from the way their crazy brains are wired. They're funny, and like clowning around. They're imaginative and incredibly caring. I know it's soft, but I kind of love the way my older ds still cries when Bops babies fly away in Abney and Teal!

2boysnamedR Thu 30-Jan-14 13:35:32

I don't see any dyspraxia in the family but all my kids are hyper mobile. Looking back I swear my mum isn't nt. she has some very strange ways. I think she is the asd spectrum. I have dyslexia and I'm quite shy. But it's the clumsy bit we don't have.

tallulah Thu 30-Jan-14 20:10:17

I could have written a similar post this morning. We have 5 DC. 2 of them are NT; the other 3 have the gamut of dyspraxia/ ADHD/ sensory processing issues etc. We are just starting on the SEN pathway with the youngest, who is 6 and I'm just so fed up with it all.

StarlightMcKingsThree Thu 30-Jan-14 21:27:33

Oh you poor thing. I'm sure the thought of another ds2 (in terms of the battles etc.) must make you sink fairly low, but the truth is that you know which energy zapping routes or services to avoid, which will help and what you can do yourself.

THAT anxiety at least should be less.

Please remember that parental blame is the cheapest intervention that magically alleviates the guilt of those who are 'supposed' to be helping.
Don't you go joining in with them. This isn't your fault.

vorpent Thu 30-Jan-14 22:11:27

I second Starlight, and tallulah, cake, brew and wine for you too!

Both my children are dyslexic and to be honest when I found out I was a bit gutted partly because I didn't want them to have to struggle in school. There is nothing you can do to prevent your child having a SEN and you will always get insensitive sods who think that a bit of parental firmness will sort things out. However, I am less stressed with DS2 (age 6) because I know what sort of things helped DS1 (age 10) and I know what milestones are realistic. I don't care what reading level he is on or that he can't do the same spellings as the rest of the class as long as he is making progress. You are better equipped from the outset to help DS2 because you understand dyspraxia even if the school doesn't.

Best of luck.

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