Children with Extra Needs

[TwooTwooTwitTwitTwoo]

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.

 

[mummy2under2]

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!

Ahhh bloody hell, slate floor... Of all surfaces
Terrifies me sometimes, he knows his own strength but sometimes he shocks himself when he misjudges how hard he's banging.

Ahh that's reassuring, thank you.
Was thinking of calling them soon but don't want to bombard them.

 

[LittleMy]

Might sound daft but have you considered buying an exercise ball? Like birthing ball size. My friend has just bought one because she's due soon and her daughter with autism has half inched it, just loving life rolling back and forth.

ETA, I sobbed my way through every episode of the first series of A Word. It was like some sort of weird catharsis. It is very well written, so subtle in places.

Yeah, I still have my birthing ball from when I was pregnant with him. I had it out when pregnant with youngest and he loved it then. He used it more than I did

 

[TwooTwooTwitTwitTwoo]

Sorry for late reply. In the end we had no electricity for 9 days! How are you?
I totally agree with you it's really hard to get your child to take medication when they absolutely refuse. Def push for a referral for CBT. It doesn't come across as awful at all as we also give our son medication if we have a day out at the weekend because it calms him down and keeps him level.
I know it's hard but don't feel guilty about having a career as you do need something for you. You're being a great role model for your children and gives you a break from the kids.
Sorry to hear you've been unwell for a number of years, hope you're ok now?
I've booked my son in at the barbers on Sat. This is monumental! He absolutely refuses to let me near his head now because I shaved his head a couple of years ago with clippers and he hated the feel of it against his scalp. My husband had to hold him down while I finished it off. Traumatic for him and me. His hair is long now and told me yesterday he wants a hair cut but not by me. I'll let you know how it goes.
Take care x

9 days without electricity! You poor things!!

Things have unravelled a bit here. He had two days in last week, with the new measures in place but the last day went very badly wrong, more class truanting, definance and rudeness etc. This meant that a mere 24 hours after being told the school would definitely not apply for an EHCP, they were on the phone telling us we may need to "re-visit" the idea. (Works for us!)

Unfortunately last weeks events have caused total and complete school refusal and has led us withdraw him from school for the rest of the term on medical grounds (with the support of his Dr). The anxiety is making him really very unwell. The CAT team are meant to come into school at some point soon and fingers crossed things might improve a bit from January if the break over Xmas helps reduce the anxiety.

However...we've aleady pretty much decided that if return to school doesn't go well then we are going to find a school that's better suited to his needs because this situation isn't sustainable long term. It's absolutely awful seeing him so distressed and the resulting behaviour difficulties (volatility, more meltdowns, attacking siblings etc) are seriously impacting us as a family. If the school are happy to apply for the EHCP then that's great but if not we will do a parental application.

Hope the hair cut goes well! x

 

[mummy2under2]

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

Yeah I've experienced this a lot.
Sorry your having the same battle.
Its tiring and draining sometimes.

There's a huge difference between meltdowns and tantrums and unless you're in the position of dealing with a child with additional needs, they really have no idea or way they can compare.
I honestly never knew how broad the spectrum was and how wide the traits and symptoms are.
I remember when my son was around 16months and I knew something wasn't quite right. I mentioned it to a friend but because he doesnt stereotypical stim at all, it was completely disregarded and I was 'overreacting'.
He does stim, but for him it's putting everything (but healthy food) in his mouth.

 

[Sayitso]

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]

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.

 

[TwooTwooTwitTwitTwoo]

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.....

My advice would be don't stress. My eldest went through a phase of only eating fish fingers, yogurt and chocolate for years. We were advised not to worry, he won't stave and "If he wants chocolate, give him chocolate". Basically a calorie is a calorie.

It can be so stressful though. One of my younger ones is now really picky and has been known to only have a slice of bread because he won't eat what I've cooked.
I've re-worked snack vs sitdown meal amounts of food now so they have a lot to eat when they get in from school, then a smaller portion for tea with a pudding, then they are allowed another snack after their bath. I found this takes the pressure off them and they seem to eat more over the course of a day. I'd also recommend carrying on getting them to try a new food item and really praising them for trying something even if they don't like it.

 

[TwooTwooTwitTwitTwoo]

Thankyou! I worry anyway. I thought it would go better than it did as I work as a 1-1 for a child with autism so know what to do in terms of helping with school work, but obviously it's different when its your own child. I'm just disappointed with the schools approach. The senco just tells me to do all these parenting courses and I find it quite insulting and have voiced this! X

I'm not surprised you're insulted. Glad you've felt able to voice how you feel!

 

[TwooTwooTwitTwitTwoo]

Hi everyone, I have a 4 nearly 5 year old who has additional needs although nothing been diagnosed yet. She is behind as to where she should be for her age and we also have challenging behaviour from waking up super early to pinching / scratching and throwing things if she doesnt get her own way.

I'm finding lockdown extremely challenging as she just wants to do 0 school work so feeling like a bit of a failure

You're not a failure!
It is so hard isn't it. Just concentrate on stuff like reading stories together. As Devon Doll said it's mainly learning through play at this age.
Have you got any sand or rice that you could draw letters in to practice them? Or transferring water between different containers to measure more/less?
I did an activity with my youngest (year 1) where he compared the weights of different toys. Anything that is more fun rather that obvious learning.

I know it's difficult to find the enthusiasm though, especially when you're not getting enough sleep. One of mine decided to get up to play at 2am the other day and woke two siblings up to join him . We are also having difficulty with challenging behaviours. My youngest one is hitting the others quite a bit, partly to deliberately wind them up. He's being rude and making random sqwarking noises in response to being asked to do anything, even simple things. It's very draining.

 

[maytoseptember]

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...

Oh that’s brilliant! You’re never going to get an “I’m sorry” from me if you tell me your child is autistic I scanned back through your posts and must have missed you saying she’d been diagnosed at last.

It’s really heartening to hear that she’s being supported at secondary too. My daughter is in year 5 now and I’m terrified of sending her to secondary. I’m forcing myself to think about it and think about what kind of school might be best for her. Thinking back to my experience and how incredibly hard the transition was (I think I spent all of year 7 and 8 completely miserable) I feel like I’ll be throwing her into a bear pit.

Oh, I really do strongly feel that I’m autistic. I’ve been wanting to talk to a GP about it for literally years but can’t face having to explain my entire life in a ten minute appointment

 

[TwooTwooTwitTwitTwoo]

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.

 

[TwooTwooTwitTwitTwoo]

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.

We are surviving. I've still be bashing away at the school work. We do three tasks a day, although sometimes a task only take a few mins to complete. To be honest though I feel like I'm coming to the end of my tether with it. I think the the only thing keeping me going is the hideous amount of guilt I'll feel, like I'm somehow failing them if we stop doing work.

My son has had several massive meltdowns and is now point blank refusing to take his ADHD medication.
Our youngest, who is in the middle of the diagnostic process has suddenly become very obviously autistic. I think he's going to be at a huge disadvantage socially when life goes back to normal. I couldn't send him back now though, even though he's year one - he's just too anxious.

My son who is due to start secondary, who isn't diagnosed but we suspect has high functioning autism, (just not enough to need a diagnosis) has become very down. I'm worried enough to speak to his teacher tomorrow and see if they can fit him in at school. They sent an email saying they were nearly at capacity though so I'm not sure what will come of it.

All in all I just want life to go back to normal really. Hope everyone else is doing ok.

 

[Devondoll]

I've defo cut back on school, I can't keep this up until September and I know technically we have summer hols but I feel like if I stop then he will forget everything?

Yeah I have this worry. I'm having a baby in the next week so that was the main reason I stopped, if not I would have tried to persevere. I'm just annoyed that school are very pushy now, but when he was in school and I was voicing my concerns they were all calm and not interested!

 

[kat.becs]

My 10 yo is epileptic and has high functioning ASD. My 4 yo is being assessed right but I'm pretty sure he's adhd and/or also high functioning ASD. I just know they're hesitant to diagnose the former.

Oldest is 16 and NT, and youngest two are 2 year old twins who so far are NT.

 

[Gingercream]

We’re just going through the EHCP process. My sons keyworker and the early years team think he’s going to need a special school

 

[TwooTwooTwitTwitTwoo]

My heart goes out to you and your family. The amount of worry and stress you are under is just awful. Sorry you are going through this, it is just relentless.
In my experience having an EHCP for my son gave us more of a voice for my sons needs to be met at school. I think going through the process of applying for your son is such a positive step and will benefit him so much.
I think it's the right decision to look for another school so your sons needs are met. Research schools when you get a chance and visit them in the new year and start the ball rolling, don't wait as it can take time. Hopefully the break over Christmas will reduce his anxiety.
If you don't mind me asking how old is your son?
My son is now 15, had the stress of primary schools (3 different ones) got the current stress of secondary school and I'll have stress next year for college.
Take care x

Thank you.

He's 11, not far off 12. He's just started secondary school x

 

[Molly Polly]

Ah really well - thank you for asking . She has settled in well to the school life and the senco has shown her someone she can go to if she needs help but can't talk to anyone.

The only thing is that she sits alone at break and lunch as she doesnt have friends yet. She is desperate for friends. Children have tried to befriend her but they don't get much back from her so they probably assume she doesn't like them.

How is your son getting on? Xx

I'm really pleased your daughter has settled in well. Give it time for friends, the kids are all still finding their feet.
My son has made 1 friend, a girl who he met at summer school but they are not in each others subject classes which is a shame. He's had a couple of mornings of not wanting to go in. Your heart breaks for them and I wish I could keep him home but I'm no teacher (going by how my teaching over lockdown went haha) but I've got to let him experience it even if it's so painful for me. X

 

[Staveyavb]

I messaged the teacher on Wednesday, told her I was really struggling with home schooling, how he seems to be afraid to even try doing anything for himself despite me telling him it doesn't matter if he gets it wrong.... She's been fabulous, told me not to worry about the school pack and then sent me a load of work sheets that will be easier for him to do and focus on letter and number formation.

 

[Molly Polly]

You're not waffling! I totally understand and can't thank you enough for taking time during a really stressful period in your life to offer kindness and support to a stranger on the internet!

We have tried two types of medication. Equasym XL which we have tried sprinkling in a variety of things; milkshake, yogurt, squash, chocolate spread etc and recently it was swapped to a liquid form of Strattera. He managed four days before complete refusal and we tried giving it straight with sour sweet chaser, mixing it in milkshake, mango juice and orange juice. He just can't cope. He does manage to take Slenyto occasionally which helps. Like you, we take medication breaks during school holidays. We did with the eldest too. Although at one point, when he would take it, we did get him to have it when we went away on holiday because it made life more bearable for everyone (I hope that doesn't come across as too awful but he has siblings who are really struggling to cope with his behaviour).

Something has changed somewhere and I can only think it's anxiety due to Secondary transition because for the bits of year six that he was at school (Covid not school refusal) he took his medication without issue. The anxiety ramps up his sensory difficulties.

We are going to ask for a referral for CBT from CAHMS which I think could be helpful, especially as he has OCD traits as well (they won't diagnose it as a stand alone condition until he's older).

I'm away for work next week and I've realised that I feel guilty. I started a new career earlier in the year, full time, as oppose to working from home part time like I was previously and I feel like I'm failing him by not being around more like I was for the eldest. I need to work though. Not just financially but for my own well being. I also really love my job. I was unwell for a number of years and waited a long time to be able to be physically well enough to work full time.

Sorry, I'm waffling now! x

Sorry for late reply. In the end we had no electricity for 9 days! How are you?
I totally agree with you it's really hard to get your child to take medication when they absolutely refuse. Def push for a referral for CBT. It doesn't come across as awful at all as we also give our son medication if we have a day out at the weekend because it calms him down and keeps him level.
I know it's hard but don't feel guilty about having a career as you do need something for you. You're being a great role model for your children and gives you a break from the kids.
Sorry to hear you've been unwell for a number of years, hope you're ok now?
I've booked my son in at the barbers on Sat. This is monumental! He absolutely refuses to let me near his head now because I shaved his head a couple of years ago with clippers and he hated the feel of it against his scalp. My husband had to hold him down while I finished it off. Traumatic for him and me. His hair is long now and told me yesterday he wants a hair cut but not by me. I'll let you know how it goes.
Take care x