Children with Extra Needs

[maytoseptember]

Thanks for your reply she has no diagnosis of anything. Academically she is fine and behaviour great as she is practically mute so nobody at school notices her anyway.

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.

 

[TwooTwooTwitTwitTwoo]

Why won't my child sleep?
He's still awake, although that's not unusual for this time but he's done three 'all nighters' recently. He's not disruptive in the night but that's almost worse because we don't know he's up until we come down in the morning and he's there (he's usually the last one up when he does sleep).

He has melatonin meds and they have made a difference in terms of the quality of sleep when he does sleep but he seems to be able to power through the sleepiness.

Also, he's now become obsessed with ducks. This could last three days or three years but he wants to see them at the park every day and take them food. I know it's minor in the grand scheme of things but it's the fall out of we can't go or if they aren't there that I'm worried about.

 

[Devondoll]

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

Mines 8 and we have achieved less than 4 days worth of the work that's been set so far. Sometimes i only have to mention school work and he throws himself on the floor screaming. It ruins the day if we start with a meltdown and honestly I'm not dealing with it. I spoke to his teacher and she tries to be understanding, then turns around and says 'have you tried doing topic as well as english and maths?' Um no because we're struggling with just english and maths!!

He also lashes out, alot. Punching, kicking, hitting, biting etc. Its worse atm as he cant get away from his younger brother and I think they're sick of the sight of each other tbh. I'm just going with the flow right now as in about 6 weeks we're having another baby so that'll turn his life upside down too! At age 4/5 it's mostly learning through play anyway so I wouldn't stress about school work. Xx

 

[Sayitso]

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.....

No real advice, my oldest only ate ham sandwiches and custard creams, could never get any help, because he was never Ill, I gave up, I figured he wasn’t hungry eating those things, he’s 23 now and although still limited he does eat a few things like pizza, chicken, rice, and bacon.
if I had any advice it would be to pick your battles.

 

[mummy2under2]

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.

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.

 

[Staveyavb]

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

 

[Devondoll]

We tried some school work today but the fight to try and get him to do any just drains me and ruins the day. So we sacked it off and went to the river. He spent all afternoon catching fish in his net and bucket and tadpoles too. Reckons it was the best day ever.

 

[bexgreen1983]

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

 

[LittleMy]

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!

I love The A Word. Just finished the third series tonight, it’s just so well made and very relatable.

My son used to head bang a lot when he was younger when he struggled with communication. He’s verbal now and rarely does it these days. One of his main stims is repeatedly cannonballing on the couch. He’s so active and can barely sit at peace for a minute. His little brother is the same, only he runs in circles mostly.

 

[LittleMy]

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.

 

[TwooTwooTwitTwitTwoo]

I've some how managed to avoid people who do this. I do have quite a few mates, probably a disproportionate number actually, who have children who are autistic (even ones who I knew from years ago before we even had children) as well as a few whose children have autistic traits but at a sub diagnosable level. I was at a birthday get together recently (Nov, pre Covid!!!) and out of ten of us, seven have children either diagnosed or in the middle of the diagnostic process.

 

[marlaxo]

My little boy has just turned 5. We had a traumatic pregnancy and he was 3 1/2 month early and on oxygen til he was 18 months old. He has had a bad stammer and speech issues and we have finally now got support from a SALT team who visit him in school weekly (and have trained a TA to do daily activities with him). Since 3 1/2, we have also suspected autism and his preschool did too, and we were just starting the formal assessment process when lockdown started. He is struggling so much with home schooling so we basically havent done it. We ended up buying a printer and pretending that his teacher brought it round, and we print worksheets off and say that Miss S has just sent one through, but each time it just ends up with raging fits of tears, running off and hiding, and punching and kicking. He had a school fire drill in January and since then he has become hyper aware of fire alarms (every where we go, be it relatives, restaurants, shops) he has to know where the fire alarm is and asks us when i was last tested. It makes me so sad that it is always on his mind.

 

[Devondoll]

We had the educational psychologist in today and she said my son struggles with short term memory and put some suggestions in place such as sensory breaks etc. Next step is EHCP! X

 

[TwooTwooTwitTwitTwoo]

Hi!
Come on over, come on in...

 

[Londoncailín]

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.

 

[TwooTwooTwitTwitTwoo]

I love The A Word. Just finished the third series tonight, it’s just so well made and very relatable.

My son used to head bang a lot when he was younger when he struggled with communication. He’s verbal now and rarely does it these days. One of his main stims is repeatedly cannonballing on the couch. He’s so active and can barely sit at peace for a minute. His little brother is the same, only he runs in circles mostly.

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.

 

[Rodneytrotter]

I felt exactly the same when my son started school. I was a nervous wreck if I'm honest. My son has autism, ADHD, tourettes and goes to a mainstream secondary school. He struggles to read and write, no concept of time, days of the week or what month it is but I'm so proud of him! He has coped so well from primary to secondary school and your daughter will too. Does your daughter have an EHCP?
It's such a big jump for them from primary to secondary. Have you spoken or had a meeting with the senco to find out how they are planning to support your daughter?
Before my son started in the Sept, in the July we had a walk around the school with our son and senco so he could see what the classrooms looked like, see where he would be eating lunch, sports hall, toilets etc. Maybe the school will do this with your daughter?

Thanks for your reply she has no diagnosis of anything. Academically she is fine and behaviour great as she is practically mute so nobody at school notices her anyway. Various people have been in to observe for example an educational psychologist and emotional wellbeing. They say they will return again (which they do) but they just say leave their notes for me and school and then come back later. This has been going on for 6 years.

School said to trust them that she will be fine as the secondary school we've chosen are particularly good at settling in year 7s by giving colour coded timetables and lining the corridors with older pupils etc (not that my daughter would ever speak to them)!

I'm so glad to hear your son is doing well

 

[Molly Polly]

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.

I felt exactly the same when my son started school. I was a nervous wreck if I'm honest. My son has autism, ADHD, tourettes and goes to a mainstream secondary school. He struggles to read and write, no concept of time, days of the week or what month it is but I'm so proud of him! He has coped so well from primary to secondary school and your daughter will too. Does your daughter have an EHCP?
It's such a big jump for them from primary to secondary. Have you spoken or had a meeting with the senco to find out how they are planning to support your daughter?
Before my son started in the Sept, in the July we had a walk around the school with our son and senco so he could see what the classrooms looked like, see where he would be eating lunch, sports hall, toilets etc. Maybe the school will do this with your daughter?

 

[Staveyavb]

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!

Oh god I didn't mean to make you worry.
Jesus if I was having a baby in the next week there would be no home schooling going on here ever! I hope it all goes well! Xx

 

[Staveyavb]

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?