Children with Extra Needs

TwooTwooTwitTwitTwoo

Well-known member
Hello! Thanks to whoever moved it 😘

So, I have five in total. Two dx asd/adhd and one in the middle of being assessed. Additionally there's one who probably is autistic but on the advice of the paediatrician we'll just watch in case he gets anxious...

That leaves one. The one that's most like me 😬. He doesn't like hugs and has the occasional ranging, screaming meltdown.

We are surviving lockdown just about but two of my children have aggressive tendencies and so far one has caused approx £200 worth of damage. I think it would be nice to talk to others in the same boat.
 
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Cariad

Chatty Member
I have 3 children ( all now young adults) , all with a mixture of dyslexia, dyscalculia, dyspraxia, dysgraphia....all have above average IQs and have all gone to Uni ( after many struggles/ fights with education authorities in Wales!) ...don't compare your children with others ( all mine are now excelling, despite struggling at primary school...the lack of provision is appalling) and find an interest which will spark their enthusiasm - not necessarily academically ( daughter loved drama , middle daughter excellent at sport, son good at gaming!)
Eldest daughter is now an English teacher at foreign language school and is deputy head ...middle daughter got a first class degree in business and son doing an environmental degree
Husband was finally diagnosed 20 yrs ago with dyslexia, dyscalculia and dyspraxia aged 38! ( he'd struggled to read - didn't read till 11 and hated school- bullied mercilessly , but loved science) Got 3 A levels and went to medical school in the 80's and qualified but was eventually unable to pass higher medical exams , had a breakdown and had to leave medical profession...this is when he was finally diagnosed!...has IQ of 158!
He actually went back to Uni and is now a senior lawyer!....he has an amazing long term memory but ask him to bring something from downstairs and he forgets! ....very clumsy at somethings yet loved building airfix kits when he was younger!...hate how education is target driven and not about the individual ( SATS mean absolutely nothing!)
 

Devondoll

Well-known member
I have 2 boys and 1 due in 6 weeks! My eldest is 8 and was diagnosed with autism last year. He originally attended the school opposite our house but even aged 4/5 he was clearly regarded as 'naughty'. The final straw was when they let him leave school at the end of the day without an adult and he walked home alone (he was due to go to after school club, no one should have been home but thankfully my husband was running late). I moved him to a smaller school in the next village and within 6 weeks they told me they thought he had autism.

Hes so bright but not 'school smart' and he doesnt really have friends. Hes obsessed with Godzilla 🤦🏼‍♀️ and dinosaurs and could tell you anything about them. But home school is a disaster 😂 I was pushing for an EHCP and I really feel he needs a 1-1 in class (I work as a sen 1-1) but his senco isnt the most forthcoming with fighting for funding. He also has an awful habit of running off when hes overwhelmed or upset, I've had to call the police before as he legged it in the woods (they sent dogs, a helicopter, 5 police vehicles 😳) and recently school lost him while AT school and had to call the police. He keeps me on my toes.
 

TwooTwooTwitTwitTwoo

Well-known member
My eldest is 19 and just finishing college. He found school difficult but came away with some quite good grades. He's managed college with support. We were fortunate to secure an EHCP for him just before secondary school and he really benefited from it. Before all the Covid stuff happened he was very close to moving into supporting living accommodation, something I hope will still be available after this is all over.

My eleven year old is very academic, very much like his dad in that he remembers facts and stores them in his 'rolodex', he's a dream pupil really. He takes things very literally though and has developed various special interests over the years. There doesn't appear to be any need to seek a formal diagnosis at the moment though because he's coping.

My middle one is struggling. I wasn't expecting to be in a situation where I was dealing with a child who has violent meltdowns again and in some ways it's harder this time round because I know the difficulties that are ahead of us, especially the teenage years. Unlike his older sibling though I think he'll be able to live independently etc. I find the overlap between traits in the different siblings fascinating, especially when comparing to me, my husband and other family members.

We spotted traits in my youngest fairly early on but weren't sure we'd ever need to seek a formal diagnosis. It's become fairly obvious though that although he's thriving academically, he's struggling socially. He doesn't really have any friends and some of his behaviours are noticeably different now compared to his peers. I don't think he will have the added ADHD complication like his siblings though, although he's perhaps still a bit young to tell yet. With my eldest the ADHD was glaringly obvious from a very young age but it didn't really become apparent in his younger sibling until he was about seven.

I don't really worry about the future in terms of what they'll achieve etc but I do worry about their mental health and long term happiness and security in that sense.

Lockdown has been beneficial in some ways but it's brought extra challenges too. Although I think that's the same for everyone, regardless of special needs etc.

I have 2 boys and 1 due in 6 weeks! My eldest is 8 and was diagnosed with autism last year. He originally attended the school opposite our house but even aged 4/5 he was clearly regarded as 'naughty'. The final straw was when they let him leave school at the end of the day without an adult and he walked home alone (he was due to go to after school club, no one should have been home but thankfully my husband was running late). I moved him to a smaller school in the next village and within 6 weeks they told me they thought he had autism.

Hes so bright but not 'school smart' and he doesnt really have friends. Hes obsessed with Godzilla 🤦🏼‍♀️ and dinosaurs and could tell you anything about them. But home school is a disaster 😂 I was pushing for an EHCP and I really feel he needs a 1-1 in class (I work as a sen 1-1) but his senco isnt the most forthcoming with fighting for funding. He also has an awful habit of running off when hes overwhelmed or upset, I've had to call the police before as he legged it in the woods (they sent dogs, a helicopter, 5 police vehicles 😳) and recently school lost him while AT school and had to call the police. He keeps me on my toes.
Oh how I can relate! One of mine is a 'bolter' too. He ran away from a school disco after an incident with another child. We had to call the police to help find him. He tends to shutdown after a major meltdown and becomes totally unable to speak.

Things have improved a bit with ADHD medication. He's lost the haunted look he had before and is definitely less anxious. He had been integrated back into the classroom before lockdown and things were looking up a bit. I'm still not convinced a mainstream secondary will be the right setting for him though. It all depends on how the next year or so goes really.
 
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fireflies

VIP Member
Hi everyone sorry anyone having hard time
Cornona giving councils excuse be even more shit and non supportive.
My child is 1 of the lucky ones he has EHCP but end month I'm at sendist tribunual appealing section f from his 2019 EHCP.
His next annual reveiw is June 2020..
I'm not nervous about courts I'm more nervous about online as totally crap with technology.
God knows when he's back in school I know he could still go.
He gets sent mostly generic work that not his level.
School do 1 online session with him once a week.
We not done much structured he's been building on Minecraft and allotment today.
Council missed deadline to submit bundle then got an extension .
They posted a incomplete bundle paper rammed through the letter box.
The costs going to tribunual mounting up o was all ready go to court in pink suit like role woods and win and now my vision of glory is ruined.
I might do a caseworker and pretend she's dropped off ends of the earth and I can't possibly communicate and blame corona.
 

Sayitso

Well-known member
I have 3 children. Oldest is an adult with hfa and is at uni, doing much better now than he ever was growing up
Middle child also at uni with no diagnosis
Youngest in primary school just diagnosed with hfa, spd, hypermobility and dyspraxia
 

TwooTwooTwitTwitTwoo

Well-known member
Hi everyone sorry anyone having hard time
Cornona giving councils excuse be even more shit and non supportive.
My child is 1 of the lucky ones he has EHCP but end month I'm at sendist tribunual appealing section f from his 2019 EHCP.
His next annual reveiw is June 2020..
I'm not nervous about courts I'm more nervous about online as totally crap with technology.
God knows when he's back in school I know he could still go.
He gets sent mostly generic work that not his level.
School do 1 online session with him once a week.
We not done much structured he's been building on Minecraft and allotment today.
Council missed deadline to submit bundle then got an extension .
They posted a incomplete bundle paper rammed through the letter box.
The costs going to tribunual mounting up o was all ready go to court in pink suit like role woods and win and now my vision of glory is ruined.
I might do a caseworker and pretend she's dropped off ends of the earth and I can't possibly communicate and blame corona.
Agh what a stress! The need for tech and video calling would make me anxious too.
The council are so slow at the best of times but things must be even more behind now.

I'm sure you'll still smash it though. Your vision of glory can still be realised!

I have 3 children. Oldest is an adult with hfa and is at uni, doing much better now than he ever was growing up
Middle child also at uni with no diagnosis
Youngest in primary school just diagnosed with hfa, spd, hypermobility and dyspraxia
We've got the hypermobility too! The link between hypermobility and autism really interests me. I keep meaning to do more reading about it. Nearly every single person I know with autistic children, their children also have hypermobility to varying degrees.
 

Buzzbee

VIP Member
I have two boys. Eldest is 4 (5 in September). Youngest is 2 (3 in August). Eldest was diagnosed with autism last June, but we’ve known since he was at least 15 months old. He’s been at nursery since 2 and will be attending a mainstream primary school after the summer. He has speech and language delays, possible ADHD (too young to be diagnosed) and possible hypermobility.

Youngest, we suspect he may also have autism and have been looking into more with the help of our HV who has referred him for specialist services. He’s very different in many ways to his brother but a few behaviours stand out. He is due to start nursery in August when he is 3 (depending on what’s happening with Covid-19) so hasn’t had much interaction with other children aside from his big brother and younger cousins.
 

Devondoll

Well-known member
How did you get a diagnosis for hyper mobility? I only ask as our paediatrician mentioned it during his assessment but that's the last it was mentioned. Also, anyone whose child have dyslexia - any pointers? I dont want to sound like I'm trying to label my child with any old thing but his writing/spelling etc is poor
 

Londoncailín

Chatty Member
I have a 14 year old son who was diagnosed with epilepsy at 3 years old, dyspraxia and hyper mobility at 9 years old, then autism at 10 years old. I think he may have other undiagnosed conditions also.
 

Sayitso

Well-known member
Agh what a stress! The need for tech and video calling would make me anxious too.
The council are so slow at the best of times but things must be even more behind now.

I'm sure you'll still smash it though. Your vision of glory can still be realised!


We've got the hypermobility too! The link between hypermobility and autism really interests me. I keep meaning to do more reading about it. Nearly every single person I know with autistic children, their children also have hypermobility to varying degrees.
For my youngest I went to the gp about sensory processing, I wasn’t even thinking of asd ( I have aspergers but hand to thought she maybe was) I knew her hands were extra bendy but again didn’t think anything. My biggest shock and I know nothing about it is the dyspraxia
 

TwooTwooTwitTwitTwoo

Well-known member
How did you get a diagnosis for hyper mobility? I only ask as our paediatrician mentioned it during his assessment but that's the last it was mentioned. Also, anyone whose child have dyslexia - any pointers? I dont want to sound like I'm trying to label my child with any old thing but his writing/spelling etc is poor
I think they only officially diagnose it if it's very pronounced. Although that may differ between regions. It has always been discussed at our appointments with paediatricians though and they've given advice about encouraging them not to 'w' sit and to do certain exercises.

One of my children is officially diagnosed with hypermobility but that was only because his knees were giving way all the time when he was walking and running. That diagnosis was made by a physio and from there we were forwarded to orthotics dept.

I'd definitely ask about it next time you get chance though. They should keep an eye on it because if he is still noticeably hypermobile as he approaches his teens and it's causing him difficulty then an official diagnosis of Hypermobile Joint Syndrome or possibly even Ehlers Danlos (type 3) may be considered.
It is frustratingly difficult to have this diagnosed in adult life because so many GP's still don't understand it.
 

Sayitso

Well-known member
How did you get a diagnosis for hyper mobility? I only ask as our paediatrician mentioned it during his assessment but that's the last it was mentioned. Also, anyone whose child have dyslexia - any pointers? I dont want to sound like I'm trying to label my child with any old thing but his writing/spelling etc is poor
We were referred to OT and sensory OT for hypermobility
 

TwooTwooTwitTwitTwoo

Well-known member
For my youngest I went to the gp about sensory processing, I wasn’t even thinking of asd ( I have aspergers but hand to thought she maybe was) I knew her hands were extra bendy but again didn’t think anything. My biggest shock and I know nothing about it is the dyspraxia
That's what we went for originally too with the middle one. We'd had vague suspicions about autism when he was younger but had put it out of our minds really. Then he started having a major problem with how clothes felt amongst other things (I've lost count of the amount of shoes that have been abandoned forever after one wear because they weren't 'right'). His difficulties really ramped up over the next two years though, so we were pretty much certain he would get an autism diagnosis after the ADOS. Even then though, I expected it to be toward the HFA/Aspie end of things so I was shocked when the results came back saying he'd need a really high level of support. The ADOS report was a real eye opener too.

I was also genuinely surprised by the initial suggestion of ADHD because I presumed the presentation of that would be like my eldest. It's really quite different though. I felt guilty for ages that I hadn't picked up on it earlier because it's just so obvious. I think the majority of my household have ADHD tendencies though so it just sort of blended in and got lost.

I don't know much about dyspraxia. My eldest was assessed for it because he had (and still has) issues with things like buttons and he can't tie laces but they said he didn't meet the criteria.
 

Staveyavb

Active member
Any advice for picky eaters?
My 3 year old will 100% eat plain pasta.
Sausages, chips, waffles, chicken, nuggets, meatballs all stand a 50/50 chance of being eaten. Anything else not a chance.
I currently operate on a "go ahead and starve" method.....
 
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