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Parents to ND children
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"Better morning than most today. Routine down to the second, and worked.
Result. "
🙌 Woo!
Today was ok. Our 4yo was late by a few minutes, which means going through school reception. No meltdown, SCORE! The reason he's ever late, is his refusal to get ready and/or leave the house, or he's busy collecting treasure along the way  |
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By (user no longer on site) 1 week ago
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Good morning all , it's actually really nice there's a nd awareness on here ..I get all the challenges and some days it just feels like you are walking on egg
Shells.. |
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Hi. My son was an IVF baby, he was born by crash section and didn't take his first breath for 9 minutes. At 12hrs old he had a lumbar puncture to check for suspected meningitis. At 2 days old they found a hole in his heart. He spent his first few weeks of life in the special care unit.
He's 10 now, and in the last 10 years he has been diagnosed with dyspraxia, global development delay and, more recently, AP23 Duplication Syndrome which is a congenital genetic condition that exacerbates the symptoms of the delayed development and dyspraxia.
It's very hard work and exhausting with him sometimes, but you know what though? Despite all all of the issues he's faced he's the sweetest, most kind hearted and incredible kid I've had the fortune to have in my life
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Don't know if this is appropriate as I type that it probably isn't, I was not diagnosed with dyslexia till the age of 18, 57 now save you looking. And I turnd down help in 1986 for it as throught it was to late. Then I watched something on TV age about 37 on alot of dyslexia problems and, onething I saw was about rebuilding nuro pathways.
Through hand eye cordanation witch I was shit at.
But I taught myself to juggle only 3 balls nothing to fancy but have to say for me it was a game changer, it was slow but find somethings where easier after about 2 years. 10min every day and I got there. |
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I'm a parent and an educator to a fair few ND children. Today I've read "were going on a bear hunt" 9 times "Handas surprise" 7 times and I'm looking forward to an afternoon of non stop "poo bum" with a bit of "kitchen disco" to mix things up.
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My elder one has taught me so much, about her, what makes her tick. She is so funny, too! She's talented, thoughtful and kind. I'm also aware of what stresses her out and can tell when her mood drops and when she's reaching burnout. It's been a tough journey, but so worthwhile to see the young lady she's become. |
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I genuinely wish sometimes they had picked up I was an ND kid. I struggled for so many years with it, I still do to some extent but I'm getting there.
I honestly salute all the parents here with ND children and the help and support you provide. I can assure you it makes the absolute world of difference to have someone understand you. It may be a fruitless endeavour sometimes but trust me. It really does make a difference |
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"Just had some amazing news today, my son has been given a place at his preferred SEN senior school from September!
Absolutely buzzing  "
That's fantastic news, congrats.
It makes life so much easier when you know that they will be happy and looked after when in school |
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"Rough few days here but still end up smiling at the end of everyday excited for her to wake up tomorrow and see what it brings.
Pickle 
My mini me is just like me
Now THAT sounds cute af 😍"
It’s chaos. |
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"Rough few days here but still end up smiling at the end of everyday excited for her to wake up tomorrow and see what it brings.
Pickle
My mini me is just like me
Now THAT sounds cute af 😍
It’s chaos. "
Life is chaos! |
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I’m a mum of a (suspected) ND child and I’m diagnosed myself (thanks to my incredible dad pushing for it). I also work with ND children.
All I’ve got to add is there’s so many incredible parents on this thread, celebrating their children’s strengths and understanding their challenges and limitations. Words can’t describe the gratitude I have for my family who fought for me to get the support I needed, at a time when girls were barely ever diagnosed. Just know you’re doing the absolute right thing in advocating so passionately for your child/ren.
Shit can get fucking tough, and sometimes you may feel like you’re the only one but there’s always a community to lean upon, as demonstrated in these comments. My inbox is open if you want to chat nd parenting xx |
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We need a holiday, without children! Our youngest leans towards the PDA side of the spectrum (PDA not diagnosed in U.K.)
This morning was challenging as always, but the forever changing tactics of his extremely intelligent brain is exhausting us.
Why can he not just get out of bed, get dressed, eat his breakfast, brush his teeth without leaving us exhausted mentally?
Will take us to home time to recover and get ready for the after-school restraint collapse.
Would not change either of the 2 kids, but definitely need a holiday  |
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My (5) kids are all grown up now, but that doesn’t mean they have all left home. Of the three that still live with me. One has adhd, one has global learning delay, and one has high functioning asd. What I can say is that it doesn’t get easier, the same challenges still exist.
Good luck everyone. |
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"Any advice for children of (undiagnosed) ND parents?"
My advice would be to chase CHAMS, school and GP to support there assessments being speeded up. Talk to your senco at school as they can make adjustments without a diagnosis.
Then read, read and read some more, every child is very different then if you have a bright child they can change daily.
My biggest bit of advice has to be, ND is not an excuse for bad behaviour, children with ND are still children and will test the waters all the time to see what they can get away with. The hardest struggle will be understanding what is due to there ND and what part is just a naughty child trying to get there own way. Xxx |
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"Any advice for children of (undiagnosed) ND parents?
My advice would be to chase CHAMS, school and GP to support there assessments being speeded up. Talk to your senco at school as they can make adjustments without a diagnosis.
Then read, read and read some more, every child is very different then if you have a bright child they can change daily.
My biggest bit of advice has to be, ND is not an excuse for bad behaviour, children with ND are still children and will test the waters all the time to see what they can get away with. The hardest struggle will be understanding what is due to there ND and what part is just a naughty child trying to get there own way. Xxx"
Thank you but I was asking if anyone had advice for the children of ND parents  |
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"Any advice for children of (undiagnosed) ND parents?"
My daughter is undiagnosed. She’s going through diagnosis at the moment we’ve had assessments etc.
I think it’s still been useful to connect with parents of diagnosed children. They’re so supportive and validating. Actually it is a friend with a ND child that has given me so much advice and support |
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"Any advice for children of (undiagnosed) ND parents?
My daughter is undiagnosed. She’s going through diagnosis at the moment we’ve had assessments etc.
I think it’s still been useful to connect with parents of diagnosed children. They’re so supportive and validating. Actually it is a friend with a ND child that has given me so much advice and support"
But any kids with ND parents? |
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"Are you talking about yourself in the role of child or parent?
Mrs TMN x
Child.
Maybe I should start my own thread.
As you were everyone
Ah that’s a whole other conversation I feel x"
Yes I think you're right.
I'll bow out gracefully.
Edited for typos |
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"Any advice for children of (undiagnosed) ND parents?
My advice would be to chase CHAMS, school and GP to support there assessments being speeded up. Talk to your senco at school as they can make adjustments without a diagnosis.
Then read, read and read some more, every child is very different then if you have a bright child they can change daily.
My biggest bit of advice has to be, ND is not an excuse for bad behaviour, children with ND are still children and will test the waters all the time to see what they can get away with. The hardest struggle will be understanding what is due to there ND and what part is just a naughty child trying to get there own way. Xxx
Thank you but I was asking if anyone had advice for the children of ND parents "
You would need to ask my children, they would be able to advice you on there coping mechanisms with me |
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I definitely wouldn’t bother with CHAMS unless it’s radically changed and resembles some kind of actual service these days..
A lot of kids have problems growing up a whole range of mental things, being different , exaggerated emotions & responses to the kinds of things other kids just deal with.
Unless they have severe forms of autism and really need specialist help, I think as a parent you just have to learn them, they are unique for sure. I don’t think there’s much anyone could’ve told me that would’ve helped that much. I think if I could tell my younger self and advice it would be relax, calm down this is normal kidsare complex, don’t expect them to understand and respond in the way you do, develop the person skills and emotional intelligence and it will be fine
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"I definitely wouldn’t bother with CHAMS unless it’s radically changed and resembles some kind of actual service these days..
A lot of kids have problems growing up a whole range of mental things, being different , exaggerated emotions & responses to the kinds of things other kids just deal with.
Unless they have severe forms of autism and really need specialist help, I think as a parent you just have to learn them, they are unique for sure. I don’t think there’s much anyone could’ve told me that would’ve helped that much. I think if I could tell my younger self and advice it would be relax, calm down this is normal kidsare complex, don’t expect them to understand and respond in the way you do, develop the person skills and emotional intelligence and it will be fine
"
My experience of CHAMS was the same. They were not at all helpful when my kids were referred. If you can get extra time, where the kids go to a kind of play group type of place once or twice a week. That always seemed more beneficial to imo. As they get older, a PA could take them out for maybe two afternoons per week. |
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Does anyone else's channel their anxiety into over the top happiness? I've never experienced this before but we had a dental appointment on Monday for an extraction and his behaviour was the polar opposite of what I had expected to the point of being ridiculously happy.
Obviously I'm not complaining and am so proud of how he handled it but I'm wondering if this is normal for ND children and I can expect it from time to time? |
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"Does anyone else's channel their anxiety into over the top happiness? I've never experienced this before but we had a dental appointment on Monday for an extraction and his behaviour was the polar opposite of what I had expected to the point of being ridiculously happy.
Obviously I'm not complaining and am so proud of how he handled it but I'm wondering if this is normal for ND children and I can expect it from time to time? "
From my experience every day is different, the best thing to do is take note on the things you did and put in place and simply try to repeat the experience, and don’t get down if the results are negative, simply tweak the process and try again. It’s a lottery in our house, but I know my positive patients has the biggest impact xxx |
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