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I don’t know what else to do - child disability?

20 replies

MGK · 05/02/2023 11:07

Good morning,

I’m posting here for traffic as I don’t really get a response in the other thread - it’s really long winded and completely outing so NC.

My 24 month old son has had some issues since he was born, he’s always been late on his milestones and still cannot walk or talk. It’s strange because at just turned 1 he could say around 15-20 words and now he can only say 2 which are dada and tah and that’s it.

As a new born he seemed very much in his own world, he never responded to his name - he does now but it’s not consistent however he does maintain some eye contact and smiles.

In November at 22 months old we saw a paediatrician who advised us he has low muscle tone, severely delayed and has GDD and wasn’t sure if he was on the spectrum so the plan was to refer to physio, refer to speech and language when he turned two, invite the portage team round and reassess in six months to see if he does need a ASD referral.

They took bloods which I assume was all clear as no one has been in contact.

We had the physio via video call and the physiotherapist said that his muscle tone is normal and he absolutely will walk in his own time and discharged him which was a bit like oh okay but it’s been 11 weeks and there’s still no improvement and I’ve noticed he can’t sit up or get up from lying on his back and he can’t hold his own weight, his legs literally buckle under him and he’s never been able to hold him up (he’s massive as well, he’s in 3-4 year clothes so I think that hinders him a little).

The speech and language waiting list is 24 months so no help there, nothing can be done about that which I appreciate.

The ADD potential is getting worse to, he barely eats and when he does we have to separate his food into separate plates so if we have Spag Bol, he needs the sauce in one bowl, the pasta in another and the veggies in another etc it’s literally a deconstructed meal and the washing up is horrendous haha but even that’s not full proof, the other day he had two packets of quavers for tea as he wouldn’t eat anything else which is having an affect on his bowels - from May until November every time he pooed it was diarrhoea and now it’s constipation which really painful bowel movements - poor lad doesn’t get a break.

I’ve made a list of what I want to discuss at the next appointment which is lines toys up and plays with wheels, stims - rocks back and forward, flaps his hands, flicks his fingers, doesn’t want people in his space, doesn’t really play with other children unless it’s on his terms, not really affectionate unless on his terms, makes unusual sounds, can’t speak, food aversion - we need to separate food and sometimes that’s not enough, has a melt down when he sees people he should know such as grandparents etc,“Spaces out” a lot, was scared of wrapping paper on his birthday and Christmas, covers his ears and closes his eyes a lot, does respond to his name but not consistently, stuffs his mouth full of food, doesn’t like change in routine, hyper focuses on tv, has bowel issues - constipation and diarrhoea, doesn’t pretend play consistently, can’t follow instructions such as “can you pass daddy the nappy’, gets very upset if he does not like a certain taste, smell or sound, won’t maintain eye contact but can give eye contact, withdraws in public spaces, repeating same phrases, seeks out sensory things - pressure, fiddling things, withdraws from social situations, still can’t walk or talk and I’ll keep adding or removing until the appt but it’s another four months away and his behaviour is challenging and I don’t know what else to do?

Any suggestions please.

OP posts:
QueenoftheNimbleFlyingCat · 05/02/2023 11:31

I don't really have any advice but wanted to bump the thread for you!! Sounds worrying for you so sending you Flowers

ThomasWaghornsConeHat · 05/02/2023 11:39

If you have any money then go private. I was told when ds was six that his speech was 6 months delayed. A private slt who did a more complete test he was 3 years delayed. He didn't get any therapy until he had a ehcp at 8 years old. Luckily we managed to get him into a private sen school with therapy on staff. Much like his younger brother who was non verbal until.we moved him to a similar school and he started talking at 7. Both schools are funded via the ehcp

Noras · 05/02/2023 11:46

Hmm. I would ask for an OT referral in the meantime to consider SPD and reassess the low motor tone issue. Not sure how physio did their physical assessment. Ask for a second opinion and say that you are not happy, followed by a complaint if you are not seen in person. The issue with bowels sounds possibly like faecal overflow with constipation so he might need moviol for infants but you need to see a GP for that. Chase up the next paediatrician appointment.

Here’s what you can do in the meantime

1 Download off the NHS website exercises for low muscle tone and follow. Also SALT website might have exercises.
2 Buy a baby language book. The important thing is to model speech and never correct. Also extend so if he says ‘car’ reply ‘yes, a red car’
3 Keep a diary and also video all his behaviour for the medical appointments.
4 Read ‘how does my engine run’ also any literatures on SPD.
5 Has his hearing been checked?
6 If he is having melt downs you need to create a low sensory environment. Research low sensory rooms etc. Also create a routine. When distressed he might need big hugs and rocking back and forth. Can you buy a weighted blanket ( if age appropriate). There are sensory toy websites and SEN education stuff you can buy. Also try to take the easier steps and allow him to develop in his own time. For instance rather than do jigsaw puzzles get a toilet roll and practice pushing a ball through it. What are his hand skills and gripping skills like?
What’s his intelligence skills like. Have you checked the various benchmarks?

Finally, don’t worry as many kids might not talk at 2 years old and don’t shut up at aged 20.

Noras · 05/02/2023 11:49

Here are some exercises.

I don’t know what else to do - child disability?
x2boys · 05/02/2023 11:51

Hi my son is nearly 13 he has severe autism and learning disabilities, he's still non verbal , he walked at about 15 months so physically he wasn't delayed ,he was diagnosed at Three and a half and has always gone to a special school.
My son had bloods taken and they found an underlying Chromosome deletion which they beleive.is the cause of his disabilities, the results did take months to come back
are there any special.needs nurseries/ resource based nurseries in your LEA ?
it's hard in the early days ,but look on your LEA,s local offer to see what's available in your area for children with disabilities.

Noras · 05/02/2023 11:52

This might help in the meantime and at least you can tell SALT look I have done that already.

I don’t know what else to do - child disability?
I don’t know what else to do - child disability?
I don’t know what else to do - child disability?
x2boys · 05/02/2023 11:54

Noras · 05/02/2023 11:46

Hmm. I would ask for an OT referral in the meantime to consider SPD and reassess the low motor tone issue. Not sure how physio did their physical assessment. Ask for a second opinion and say that you are not happy, followed by a complaint if you are not seen in person. The issue with bowels sounds possibly like faecal overflow with constipation so he might need moviol for infants but you need to see a GP for that. Chase up the next paediatrician appointment.

Here’s what you can do in the meantime

1 Download off the NHS website exercises for low muscle tone and follow. Also SALT website might have exercises.
2 Buy a baby language book. The important thing is to model speech and never correct. Also extend so if he says ‘car’ reply ‘yes, a red car’
3 Keep a diary and also video all his behaviour for the medical appointments.
4 Read ‘how does my engine run’ also any literatures on SPD.
5 Has his hearing been checked?
6 If he is having melt downs you need to create a low sensory environment. Research low sensory rooms etc. Also create a routine. When distressed he might need big hugs and rocking back and forth. Can you buy a weighted blanket ( if age appropriate). There are sensory toy websites and SEN education stuff you can buy. Also try to take the easier steps and allow him to develop in his own time. For instance rather than do jigsaw puzzles get a toilet roll and practice pushing a ball through it. What are his hand skills and gripping skills like?
What’s his intelligence skills like. Have you checked the various benchmarks?

Finally, don’t worry as many kids might not talk at 2 years old and don’t shut up at aged 20.

This is true ,but some will still be non verbal at 20 ,2 is very young it could go either way ,but unfortunately some children will never gain speech.

Noras · 05/02/2023 11:56

Also apply for DLA even without a diagnosis you can still apply. I would ring up the paediatrician and seek an urgent appointment. Are there no longer multidisciplinary child delay assessment teams? During this, all the aspects are looked at on one day eg language, cognitive learning, gross motor, fine motor , emotional/ social skills etc. You then get a comprehensive detailed study.

MGK · 05/02/2023 12:00

Thank you so much everyone, I didn’t know about a lot of these things so will be looking into them tomorrow and will hopefully be a bit further along.

The portage lady who comes round disagreed with the paediatrician and said he wasn’t severely delayed and had a problem solving brain and his fine motor skills are advanced, I’ll check the milestones and markers for his intelligence.

I wasn’t really happy with his physio assessment as didn’t think a video call could really tell you much and the portage lady was surprised he was discharged so will look into that again.

Gonna look at the websites now, thank you.

OP posts:
Noras · 05/02/2023 12:12

Not walking at 2 does happen in NT kids especially if the child is maybe heavier. Also the lack of speech can happen in NT kids. So nothing is certain. However, all the other stuff might indicate some sort of sensory and low muscle tone thing that needs to be checked out. Once he starts nursery they will be on the case (hopefully) but obviously, it’s better to get on the case quickly. If you can afford you could get private reports .Also they are more thorough than NHS reports as well. Also, if they find an issue they can help support a claim for DLA, if appropriate.

Wizzpopfizzbang · 05/02/2023 12:14

Hi. I just wanted to say that you are doing the right things in following this all up. To add,
you don’t need to wait for a diagnoses to make adjustments for your little one… which it sounds like you already know!... Please look on the National autistic society website and also look to join a local autism parent support group. You don’t have to have a diagnoses child to join often. Be aware of friends helpful/ unhelpful comments advice and judgement. You know your child best and where the line is between supporting them to access situations and actively opt out. I would encourage you to look at symbols ( this doesn’t mean that your child won’t ever speak, symbols support language and understanding and won’t reduce verbal communication if you use language with them) learn lots about sensory challenges and in particular something called ARFID. ( this is related to food and goes beyond picky eating) I would encourage you to seek as early as possible ( once you have your reports) something called an EHCP for nursery and school. Also that you don’t need to have a diagnoses to seek benefits in relation to disability or difference.
from your post I can see that this is going to be a journey you are on that is likely very different to the one you may have had in mind a few years ago…. The wins your child makes will be all the more celebratory there will be tough times and amazing times…. Please find people
in similar situations who get this!… as what will make a thousand times harder is spending time only with those that don’t. Xx also don’t look to cure autism….there isn’t a cure despite what people who want you money tell you…
autistic people state that thier autism is intrinsic to them, not something that can be removed, autism IS them… they also describe joy that appears unmatched by un autistic people …
especially in relation to thier obsessions/ interests. ( which offer security when things are tough) good luck. Xx

Wizzpopfizzbang · 05/02/2023 12:17

Also ‘ a problem solving brain’ is a logical one. Autistic people have logical brains.
ps great ideas above from other … just to note. Don’t use weighted blanket unsupervised and they need to be the right weight for your child’s weight or they can be under or over stimulating

SenseiOfDuty · 05/02/2023 12:20

Read about autism. You can be both advanced at problem solving but also autistic - think of it as having a spiky profile with extreme strengths and deficits. Without diagnosing from an armchair, as others have said, he sounds as though he is autistic and many people will recognise your story. Facebook groups, especially local ones, are good and you can get support from people with experience.

How involved you get will directly affect your child's progress. Some people hope that the supports will fix everything, some people use the supports as the building blocks to take it further themselves...

ipswichwitch · 05/02/2023 12:20

With regards to the constipation, is he on movicol? We had horrendous issues with our DS, and was prescribed movicol, as it had got so bad he’d refuse to go to the toilet because it was painful, so he ended up impacted too. His diet is not great (he’s autistic), but once we got the constipation sorted, he’s now just on a maintenance dose to stop it becoming an issue again. Constipation will affect his appetite, just ensure he keeps drinking plenty.

DS also has food issues, and rather than countless bowls and plates for each meal, when he was younger we got him a tray with sections for different foods (we called it the prison food tray!). Stopped all the foods touching, and only one thing to wash.

Wizzpopfizzbang · 05/02/2023 12:26

Just a few notes from your original post :
don’t force eye contact… it can be difficult for those on the spectrum and in some cases painful
you mention behaviour is challenging
definitely look to learn about sensory and predictability
timelines/ plan the day
don’t change the plans at this stage
don’t put demands on him at this point …. Eg “ pass daddy the nappy” try oh you did x , that’s great…. So you use the language but not putting any additional pressure on.
create as many routines as you can to reduce anxiety
supper him to gain access to his interests eg tv. Don’t worry if this is on at tea time …. Yep very sen parenting is a whole different approach!
if something seems anxiety provoking try and balance out ( imagine a set of scales… the more you ask of him/ the more he has to tollerate sound unpredictability the more you will put on the other side of the scales moments where there isn’t a demand/ speaking/ he can have access to the things that make him safe eg tv)
get a ‘ den’ tent inside or covered space where he can go to regulate if you have visitors with no one making him come out
and for your own sanity …. But a shed load of small paper plates ( cheap in pound stores…) and use these for meal times for him. ( yes I know not great for the planet… but in this situation … )
also bowel issues very common in autism and … sometimes struggle to recognise the signs but also scared of the sensation of going and regarding potties the ‘ void’ around them and many prefer for a long time to go in a nappy .
x

Wizzpopfizzbang · 05/02/2023 12:27

Oh lol be the separate parts tray!… forgot about these x

Wizzpopfizzbang · 05/02/2023 12:29
  • sorry phone being rubbish!…. Meant to say! ‘ love the separate parts tray!’
lifehappens12 · 05/02/2023 12:53

Hi, couldn't read and run. I have a four year old with speech difficulties and at 2 had no words. Just sounds. His behaviour is and still can be very difficult as for a long time he couldn't effectively communicate. Nhs salt wasn't great to be honest and we found a private therapist who has been great and helped train me in what I needed to do to help him learn to speak

MGK · 05/02/2023 16:12

Thank you everyone I am reading and taking it all in.

my heads just buggared today - I really need a second opinion on the walking honestly he can’t bear weight on his legs, can’t get up from a lying position and if we do any activity he sleeps like 16-18 hours and is knackered for days - am I crazy for thinking that’s not normal!?

I just feel very overwhelmed with it all so thank you for all the tips and tomorrow I’m gonna put my big girl pants on and fight for my little boy.

OP posts:
Wizzpopfizzbang · 05/02/2023 22:56

Well done you one step at a time . Make time for you too …. Sorry to say this is the start of the SEN fight…. But you will become a person you dont even recognise fighting for these little ones teachers us so much about ourselves …. Your little boy is lucky to have you…. ❤️

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