Children with Extra Needs

[Cariad]

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]

Does anyone else have friends who are forever trying to self diagnose their kids? Honestly it boils my p*ss. Its all 'oh they had a meltdown over x,y,z'....no they had a tantrum because they didnt get their own way. Or 'they are obsessed with wearing this outfit' yes most kids go through a phase like that. I find it offensive when they try and compare their kids and 'diagnose' them. Theres so much more to autism than the stereotypical traits. I cant even discuss it with my cousin as she then repeats what I've said about my child but says her child is doing it

 

[Littlechinagirl]

My 1 year old has cystic fibrosis. So while I don't have experience of a child with learning needs, I can relate a lot to being outside of the 'norm'.
I'm sure you've all read it, but the poem 'Welcome to Holland ' really helped me at one point.

 

[Staveyavb]

Hi everyone hope you're all well? My 7 year olds teacher pulled me after school today to say she's put his name down for the Sen team to I dunno assess him? It's not for a dyslexic diagnoses but she says it's getting the wheels in motion, I'm impressed as this is very early on in the school year and she's remembered my concerns from back when I was the teacher. She said he's highly intelligent but struggles to get it on paper x

 

[Staveyavb]

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.....

 

[simplelifex]

Hi everyone, I have a 10 year old boy who is type 1 diabetic, he was diagnosed April last year after a bad bout of chickenpox. It has quite probably been the hardest year of our lifes, it was a massive lifechanger and I can't help but feel guilt and sadness he has to go through this. He also had an operation on both legs August last year to lengthen his tendons as he's walked on his tip toes since he was able to walk. For years I pointed this out as family members also suffered from the same condition and had corrective surgery, he had years in casts to try lengthen his muscles, PT, splints. It took years of pushing for him and now he is on his flat feet, desperately in need of PT but due to the virus we are still waiting to hear back. I'm so proud of him though, he genuinely inspires me with his determination to just get on with it

 

[Rodneytrotter]

FWIW your description of her poor social skills, stimming and obsessive daily routine absolutely screams ASD and I can’t believe you’ve been so badly advised by the primary school.

Actually I can, because when I spoke to the school about my then year 3 daughter about autism, I think they thought I was making it up. She masks hugely at school. At school she is a model kid. She prefers the company of adults to her peers and comes across as confident and mature.

At home the mask falls off and she talks in baby talk if she talks at all. Sometimes she communicates in squeaks and miaows (she’s 10 now and still does it!).

I went ahead and pursued a diagnosis without any input from the school. I was lucky because my son is also autistic so I was able to contact the team who diagnosed him who spoke to me at length before agreeing to refer to the paediatrician.

Secondary school is often the time when the wheels fall off for autistic kids. They move from a smaller, more nurturing primary school environment to a huge, not nurturing at all secondary school environment, and they can’t cope.

Hopefully the secondary might be more supportive in getting your daughter assessed. I really suggest you do it.

People might try to convince you that a diagnosis will be a hindrance in her life, but I promise you it won’t make her any less autistic. I’m convinced I’m also autistic and I’ve spent my entire life hating and blaming myself and feeling like a failed adult. It’s a really heavy burden to carry.

Thank you for your supportive post

As an update she has now been officially diagnosed with ASD. She scored well above the threshold and the team did mention that they are shocked that nothing was picked up sooner.

Luckily her secondary school are extremely supportive and nurturing, primary school is now a bad memory for her so it's onwards and upwards.

I would say if you strongly believe that you are autistic then you probably are...

 

[TwooTwooTwitTwitTwoo]

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.

 

[Rodneytrotter]

My eldest daughter (11) has very poor social skills (can't hold a conversation unless its about her favourite topic), stims constantly jumping/ hand flapping/ humming and has an obsessive daily routine (even says the exactly the same thing to me at the same time each day).

At school she is no bother and academically doing fine.

She is amazing at maths and enjoys it but can't tell the time.

She is a happy girl at home but I do worry about her starting secondary school this year.

 

[Sayitso]

Does anyone else have friends who are forever trying to self diagnose their kids? Honestly it boils my p*ss. Its all 'oh they had a meltdown over x,y,z'....no they had a tantrum because they didnt get their own way. Or 'they are obsessed with wearing this outfit' yes most kids go through a phase like that. I find it offensive when they try and compare their kids and 'diagnose' them. Theres so much more to autism than the stereotypical traits. I cant even discuss it with my cousin as she then repeats what I've said about my child but says her child is doing it

Or those ppl that say ‘ she doesn’t look autistic’ that drives me mad. And the staring when they are having a meltdown in public. ‘Oh you should be tougher’ ‘ooh if you don’t put a stop to that behaviour you’ll regret it when she’s over’
I’m quiet abrupt with ppl now if they say something when they say something, but yrs ago when it was my first I felt so bad and like I was being judged because I was @ young mum

 

[Devondoll]

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.

 

[Devondoll]

How is everyone coping? We stopped school work (not sure we ever really started) and it's made everyone happier and much more relaxed. The senco contacted me for the first time in 12 weeks last week, unfortunately for me its too little too late and I'm not interested in speaking to her. My sons teachers havent been bad throughout but it's taken them 12 weeks to offer to arrange work specifically targeted to my son and I feel this should have been offered weeks ago?! To top it off on tonight's dog walk he did a runner (he often does but hides rather than runs off) absolutely no sense of danger and I cannot get through to him about not running off.

 

[Devondoll]

Oh the shoes my son wears 1 pair. We have gone through so many pairs and he literally puts them on his feet and says no. I've given up

 

[fireflies]

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.

 

[TwooTwooTwitTwitTwoo]

Sending hugs your way. It sounds like you’ve all been through the mill. I’m so sorry for the loss of your son’s father.

That’s such a tough decision to have to make, but it’s like you say; you have to think of everyone on the scene and what’s best for all of you as a whole. I can only imagine how difficult it must be and the guilt you feel, that so often comes with being a parent of any child particularly those with additional support needs, must be intense.

That’s strange that the “expert” had to Google ADHD. Doesn’t sound like an expert to me. Have they said why they recommend your son stop his medication? It sounds like he really needs it so I can see why you’re both against that idea.

My sons are still very young so it’s hard to tell where they will be at or how they will cope as they get older, but my mind very often wanders there and it worries me that one day they might become too strong for us to manage by ourselves and their meltdowns become too much to cope with. You’re a good mum, you’re trying to do right by all of your children and it’s not easy. Take care of yourself, you’re doing the best you can.

Thank you so much.

They haven't said why they would consider stopping it so I'll just have to wait until the next appointment to ask. Hopefully it will be ok.

I understand your position. I'm almost in it again, looking at the younger ones who may or may not have similar difficulties to my eldest going through life.

Thanks again for your reply. I find it really hard to ask for help so wouldn't have mentioned it to friends etc. On here is easier.

 

[TwooTwooTwitTwitTwoo]

I feel like a fraud hanging in here when all I have to worry about is the fact he jumbles things up and can't really read well but here I am *waving* x

All types of additional need count, diagnosed or not! *waves back* x

 

[Gingercream]

My middle boy is 3 and on the pathway for an autism diagnosis. He is non verbal and delayed in all areas apart from massively ahead in gross motor I caught him climbing into the fridge earlier!

He’s a massive sensory seeker and is constantly climbing, spinning, tapping to make noises. He will only eat crunchy food so his diet consists of dry cereal, crisps and crispy oven chips.

He’s at an amazing nursery and has 1 to 1 there which is really helping. He has speech and language therapy there too and a specialist teacher from the council has just taken him into his caseload too to help us - he’s starting to use PECS to communicate but we need help with it. They’re going to start applying for an EHCP for him this summer to make sure it’s sorted for when he starts school next September.

I didn’t realise there was a link with hyper mobility! I’m hyper mobile and my husband is always saying he thinks I have ASD I struggle with social stuff but am good at masking and then am knackered and can barely function when I get home.

 

[LittleMy]

Does anyone else have friends who are forever trying to self diagnose their kids? Honestly it boils my p*ss. Its all 'oh they had a meltdown over x,y,z'....no they had a tantrum because they didnt get their own way. Or 'they are obsessed with wearing this outfit' yes most kids go through a phase like that. I find it offensive when they try and compare their kids and 'diagnose' them. Theres so much more to autism than the stereotypical traits. I cant even discuss it with my cousin as she then repeats what I've said about my child but says her child is doing it

I think those type of people are just looking for excuses for their children’s bad behaviour. I guess it’s easier to self diagnose than to admit you might’ve gone wrong somewhere as a parent. It is insulting though, because they really don’t know the half of it and you’re right, there’s more to it than the usual stereotypes everyone knows.

 

[TwooTwooTwitTwitTwoo]

This thread has been dead for months so I'm not sure if it's the done thing to revive it but I need to...

The last few months have been really difficult (for everyone, I'm aware it's not just me!). Before Covid my son had a place arranged in Assisted Living. They phoned us in April, after the lockdown to explain we needed to go ahead then or come off the list. I will be providing over half the care hours and at the time I wouldn't have been allowed in. So with heavy hearts we pulled out, having been told it would all be recorded as due to Covid so we could come back to the process.

During this time my son's dad died (Covid with underlying health issues). So his meltdowns have increased.

We re-started the Assisted Living process months ago. A few months ago I had a phone call with someone who claimed to be an expert but who literally had to google ADHD on the phone. Don't get me wrong, she was lovely but WTF!?

The last appointment with his psychiatrist she suggested stopping his Risperidone. Before he was on this his meltdowns were daily and they were violent. We both (me and son) said no that can't happen.

I've just had to prepare my child that if they do stop him taking it, I'll have to ask them to put him in emergency accommodation. I cannot even begin to explain how crap I feel but it is the right choice.

Before medication he was violently melting down every day. It honestly was akin to being in an abusive relationship.

These days, the younger ones are older, two of them are also autistic so need extra input.

Maybe I am asking for someone to say I get it. You're saving who you can. That's how it feels. The others will drown otherwise and I won't be in a place to save them.

Sorry, so much waffle.

 

[TwooTwooTwitTwitTwoo]

This sounds exactly like my eldest.
Hes the fussiest eater I've ever known. Currently surviving off custard, dry shreddies and bread.
He's very reluctant to try new foods and is hypersensitive so won't pick up or touch anything new or eat things that come from certain packets.
He's also non verbal but we're getting there slowly with communication.
Currently going through the headbanging stage, gets very frustrated when he can't communicate and bangs his head on walls, floors, cupboards... Anything really.
Awaiting an autism diagnosis, been on a waiting list since he was 16 months old for various things. OT, SALT, MENCAP... Just a drawn out process and bloody Corona hasn't helped at all.

I dread the sound of headbanging. Middle one used to do it as a toddler, the slate floor was his favourite place. He's done it a few times at school over the last year too.
Randomly my eldest has started doing it during meltdown, just in the last few months too.

I really hope things progress with the diagnosis for you soon. It's so slow at the best of times though. If it helps, when I last spoken to my son's Paed she said they are still working through the appointments as best they can.

Has anyone watched The A Word tonight? There was a line in it that made me spit my drink out. An autistic lad (Mark) had got a job and Paul asked him why he hadn't mentioned he was autistic. He replied that it's because he isn't anymore:

Paul: "and when did you realise this"?

Mark: "When I stopped banging my head off the wall and breaking my mum's furniture".

I've not laughed so much for ages.

Sorry if no one watches it and you have no clue what I'm on about!