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Global developmental delay. Will it ever get better?

(68 Posts)
Ayd7815 Tue 15-Jan-19 18:28:58

Hi everyone. I’m hoping someone in a similar situation can give me some advice.

My son was born prematurely at 32 weeks and he was in NICU for 2 months mainly feeding and growing. Wasn’t on ventilator but needed oxygen support for 2 weeks. Fairly uneventful.

Born in August due date was in October. So he has to go to school a year earlier then expected and also being born early with delays puts him at a huge disadvantage.

3.3 years down the line he had a GDD diagnosis since 2 years old. He sat at 8-9 months. Crawled at 1 year old and pulled up to stand at 13months. Walking with a walker toy at 18 months and walking independently at 22months.

He’s delayed still as he can’t yet walk up stairs with ease. Uses his hand on the rail for support. Also he will fall if he’s walked into. He isn’t fully stable yet. But he climbs on chairs and sofas and everything. But he’s making progress every week and gets better and better and more and more stable. Normal movement pattens. He has hyper mobility so I think that’s why he was delayed here. The physio/ OT he has signed him off.

Cognitively he’s delayed. Knows some colours and shapes if I ask ‘which one is’. He loves books and points out all the pictures when I ask ‘where’s’. He sounds out plenty of animal sounds when I ask ‘what sound does this animal make’. Does some simple puzzles. Esp peg board puzzles with circles. Can draw a circle when asked and uses crayon between thumb and finger.

He is very speech delayed only has single words. Started talking at 3 but used to babble fine before. He points at everything he wants since 12 months. This is how he used to communicate and knows plenty of gestures. He follows lots of single step instructions and some 2 step instructions too. But he not yet toilet trained. Not sure if he’s ready.

I think he’s 6months to 12 months behind in most and 18months in speech. He makes progress all the time but I’m still very worried why he’s delayed?

Self care skills he helps getting undressed but can’t do it alone. He can feed himself with hands and a spoon. He knows how to brush his teeth and wash his hands but doesn’t like doing it. He’s delayed for a typical 3 year old in this area too.

School he’s had senco since 2 (private nursery) and now He’s in preschool and they want him to have a EHCP for reception. They say he will struggle without it and the gap will widen.. Do you think he will quailify for this? Does he need one? Isn’t the school SENCO enough? They said they don’t have funds and lack of staff maybe this is why? They say he will get knocked around on a play ground and he’s still in nappies and needs encouragement to eat at lunch. (He’s not a fan of eating. He’s lazy)

I’m worried about ASD or learning difficulties. Will he catch up with support? Are these likely with what I have discribed? Feeling so down and emotional for days now sad

Ayd7815 Tue 15-Jan-19 18:49:46

I should also add. He has no issues with eye contact and smiling and getting excited etc. He’s ur affectionate and loves cuddles. He’s always trying to get me attention and is good with interaction too. (When we reading together)

He copies actions other do all the time. Copies cartoons and gets excited and is careful and affectionate around the new baby in the family (neice).

Ayd7815 Tue 15-Jan-19 18:58:40

Sorry should also mention he may not say mich but he does recognise lost of nursery rhymes and does the actions for them

Ayd7815 Tue 15-Jan-19 18:59:10

Lots*

HugAndRoll Tue 15-Jan-19 19:20:29

Both of my children are/were delayed, one has a funded healthcare plan (but it's only just been implemented and he's 6 in year 2) and the other has just been refused assessment for a statement, but we're taking the LEA to tribunal (10 in year 6).

Neither walked before the age of two, both were cognitively delayed, both speech and language delayed, both hypermobile (youngest very - being assessed for EDS), both low tone, both behind with self-care skills.

DS1 (age 10) was diagnosed as autistic at age 5. He's academically bright, but his self-care and emotional regulation skills are at about age 6/7. He's also got sensory processing issues, auditory processing disorder, and co-ordination disorder. Some of his skills (for example handwriting) are assessed as being on the 6th percentile, and his co-ordination was last assessed as being on the 2nd percentile. He has interventions in school, but like I said has been refused assessment for a statement.

DS2 (age 6) has a global developmental delay diagnosis, has one genetic disorder which doesn't massively affect school (Alpha-1 Antitrypsin Deficiency), another being investigated (EDS), and is on the neurodevelopmental pathway for suspected ASD (likely as his brother and I are both diagnosed). He does have 1:1 support, but actual funding for it has only been forthcoming this term. His delay was similar in timescale to your son's - he's still in pull ups due to gastrointestinal dysmotility, and is a part-time wheelchair user, but cognitively he made huge leaps in year 1 (at 3 paediatricians thought he may have a cognitive learning disability, now he's low-average for most things).

tl;dr version - your son may need some extra support, but not necessarily at the level the school are stating. To be honest, other than the speech and potentially the toilet training, he doesn't sound too far behind. It's likely that he will make progress unless there's a medical or neurodevelopmental reason that he doesn't, and even then progress is likely it'll just be slower than a typical child.

The fact he understands language is brilliant as receptive language is more difficult to progress than speech (in my experience). In the meantime, he is communicating with you so be led by him. He sounds great!

HugAndRoll Tue 15-Jan-19 19:22:39

Oh! Both my children need help with self-care: bottom wiping, dressing, undressing, etc. My house is also full of visuals to assist with these areas.

What input does he have? Has he been assessed by an occupational therapist or speech and language therapist?

TheFirstOHN Tue 15-Jan-19 19:41:30

DD had global developmental delay; the areas most affected were large motor skills and speech/language. She also scored low on cognitive tests (the paediatrician used the phrase "educationally subnormal").

Developmental milestones: I can't remember all of them, but she first sat up unsupported at 12 months. When she started Reception she was putting words together to make 2-3 word phrases.

Current situation: She is now 14 and all that remains is a very slight speech immaturity (only noticeable when she is tired) and mild difficulties with motor coordination (only noticeable when it comes to playing sport or trying to ride a bike).

Academically: She scores above average for her age in standardised tests and her processing speed has improved so much that she will not qualify for extra time in her GCSEs.

Aspirations: She is aiming to get grade 6 (B) and above in all her GCSEs and would like to study A-levels.

April2020mom Tue 15-Jan-19 22:44:36

My son and daughter have physical disabilities. For several days they were in the NICU.
How much therapy does he need?
My son and daughter qualify for physical therapy. However they are on track with their speech development, fine motor skills and cognitive abilities. While their big motor skills have definitely been impacted they require very little support from me.
One has dwarfism the other has Spina Bifida (SB). Delayed doesn’t mean never going to happen. It’s amazing what therapy sessions can do for our children. That and prayers. Lots of them. My son has made some significant progress since we started physical therapy.

Ayd7815 Wed 16-Jan-19 09:03:16

Hi HugAndRoll! Thanks so much for your reply.

That great your kiddos are doing so well and progressing. Do they go to mainstream school? How are they coping? How helpful is EHCP for your son?

What does cognitive learning disability mean? What does this look like? Even if my son is lucky enough and doesn’t have a neurodevelopment issue or genetic issue I’m worried my son may still have a learning/cognitive/intellectual disability or difficulty and struggle in life/school.

I agree with that I don’t agree on the level the school are stating on the help he needs. I think it may be because my son is quite shy and he’s a only child and hasn’t been around much children and it’s taken him some time to settle in nursery, he hasn’t shown what he can do to be honest. I see the most and he’s most comfortable at home. But his head teacher said he won’t catch up and needs a EHCP because he’s not fully stable and he’s still in nappies and he’s behind compared to other 3 year olds.. I was quite upset about this, she was so abrupt and she kept comparing. I haven’t asked if the school SENCO is enough to help him. Maybe I should? It’s an OFSED outstanding primary school with a nursery too.

She did say she will arrange a speech and language therapist to help him school however.

My DS GP said he doesn’t seem to be Autistic and could catch up maybe? Also the private nursery he went to the senco said he was progressing well and were always so positive

He was seen by a PT from 6m to 2 years old due to prematurity. She discharged him saying he doesn’t seem to have any signs or neurological issues and didn’t seem dyspraxic. He is underweight however (2nd centile) but also quite tall. He had bad reflux when he was younger and wasn’t good with bottle feeds. He eats most things now but his chewing skills are not the best he takes time eating.

He also was seen for a while by the OT but has also discharged him asking the school to implement plan and should make progress. He still has speech and language therapist since 2.5 also. But to be honest that are not that helpful. They only come once every 2 months, to see him.

Do you think it’s worth getting a private therapist for speech? Also do you have any tips to help progress his speech?

I agree the speech delay is quite far behind and his potty training I haven’t tried because I didn’t think he was ready. Lately he has been going few hours with a dry nappy, and when I ask if he’s done a ‘wee/poo’ he points at his nappy. Do you have any good tips to help this along? Maybe I can get him trained before Sept 2019? If he was born on time he wouldn't have to be in reception till Sept 2020.

His receptive language is progressing I can see a lot faster than his speech, e.g. I will ask him ‘go get a nappy from your room and give it to mum’ he then walks into his room opens the draw and takes it out and brings it to me. He also helps with household chores when asked. Like picking things up and putting it in the bin. Also I will ask him questions like ‘do you want...’ and he will either say yes or no or nod for yes or no. He calls me ‘mum’ and his dad ‘da’ and plenty of single words but no sentences yet. This concerns me.

He doesn’t have a lot of awareness of the world yet that’s typical for his age, like time of day or night, if he’s hot or cold he won’t tell me etc like other 3 year olds but maybe that’s because his speech/cognitive is so delayed he can’t communicate well. It’s mainly he routine he knows well and instructions he follows etc.
I just want the gap to get narrower not wider and he gets older and progress well. It’s all very scary sad

Ayd7815 Wed 16-Jan-19 09:07:20

Hi TheFirstOHN! Thanks so much for your reply this has given me hope! Was your DD misdiagnosed with the low marks on cognitive tests then since she will go onto to do GCSEs and A Levels? Or did it just get better with time or did you and interventions in place to help her get where she is now?

Ayd7815 Wed 16-Jan-19 09:13:30

Hi April2020mom! Thanks so much for your reply!
I agree therapy and prayers are so good for our kiddos, my DS amazes me all the time. That's great your children have made so much progress and that they on track with everything else! I hope for my DS the delay doesn’t mean its not going to happen either sad

Thekidsarefightingagain Wed 16-Jan-19 09:20:56

He sounds VERY much like my son at that age although my son now has an ASD/ADHD/dyslexia/dyspraxia diagnosis. He has a very spikey cognitive profile - v strong in some areas, v weak in others so specific learning difficulties. He has a speech and language disorder. He's caught up in the sense that with the right support he should be ok academically once the dyslexia is tackled, you can't really tell him apart from his peers quite as much nowadays. The gap was HUGE years ago.

Thekidsarefightingagain Wed 16-Jan-19 09:24:16

Actually I'd say your son is further ahead than my ds was as he certainly couldn't draw a circle or hold a pen! Most of his peers weren't toilet trained at that age either.

Ayd7815 Wed 16-Jan-19 09:51:13

Hi Thekidsarefightingagain, thanks for your reply!

I'm glad your son is caught up with the right support, How old is he now?

I'm not sure if my son has ASD/ADHD/dyslexia/dyspraxia, his GP said he didn't think he Autistic because he's very engaging in that particular appointment but time will tell on that one. Also his PT said she doesn't think he is dyspraxic either. So I'm not sure, who knows what his GDD will change to?

It gives me some hope that one day he may do okay academically and the gap has narrowed for your son smile

When was your son Potty trained? how long did this take and do you know any tips or what to look out for when he will be ready?

HugAndRoll Wed 16-Jan-19 10:02:36

You sound very worried, Ayd, and I think it's the attitude of the school that's done it. I just think they don't want to have to deal with an incontinent child, however legally they have to, and they don't necessarily need a 1:1 to do it either.

Both of my boys are in mainstream school, and they are very well supported (though school agree my eldest needs more support, it's just the LEA are being difficult).

I'm in Wales so we're not on EHCPs yet, and the only reason DS2 has a funded healthcare plan is because he needs full time 1:1 for his physical needs, and school couldn't afford to maintain this from their delegated budget. He gets 20 hours funded now, which is a big help for the school. A general rule of thumb is that your child needs more than 15 hours a week of support to get a statement/funded healthcare plan/EHCP.

I'm going to be honest, this sounds more like a problem with the school than your DS. He sounds just like my eldest, and he's never had 1:1 or a statement/EHCP, although we feel it will be necessary for high school. However, if we'd had one offered to us, I'd have grabbed it with both hands. My son really could have done with the extra support, he was deemed not "struggling enough" to get it, and it's really damaged his self-esteem, and his anxiety levels are awful.

This phrase: ‘go get a nappy from your room and give it to mum’ is a three step instruction. If your son can follow this without any issues, I'd say his receptive language is brilliant for a three year old! My ten-year-old would struggle with this instruction, and would require visual back-ups and verbal prompts to complete it.

A medical (rather than educational) cognitive learning disability is when your IQ is lower than 70. This won't usually get diagnosed until a child is about 6/7. The reason is twofold: 1) children develop at different rates, so they don't want to misdiagnose someone who was actually just a bit slower to get there (if they did it at 3, my son would have this diagnosis, and he definitely doesn't have one!) and 2) children can't generally cope with IQ testing until that age.

With regard to his delays, are the figures you've given up-to-date? Are they for his corrected age? What percentiles is he on? To give you an example of my son, here are his Ruth Griffiths Test ages (he was 36 months at the time):

Locomotive: 21 months (not given a percentile)
Personal-Social: 25 months (not given a percentile)
Hearing & Speech: 29 months (10th percentile)
Co-Ordination: 24 months (not given a percentile)
Performance: 24 months (not given a percentile)
Practical Reasoning: 30 months (30th percentile)

As you can see, he was on average 12 months behind across the board, with the exception of his practical reasoning. His general cognitive delay was placed at 8 months behind when he was re-tested two months later using a different test. The other reason I've popped this down, is two of the areas show a delay, but actually (as you can see from the fact they have a percentile score) they're within normal perimeters, just the low-end of normal.

It's also worth noting that at the time of testing, DS2 had very few words, and could barely follow one-step instructions, yet he was still not as behind as you'd expect. If your son hasn't been assessed recently, I'd ask your SALT for reassessment as it may put your mind at rest. If it's still showing an 18 month delay, at least you'll know where you stand.

With the exception of his social communication (being assessed for ASD), his locomotive skills (has a physical disability), and his self-care skills, he has pretty much caught up in all other areas. My son was not premature, so there's no age to correct to.

Thekidsarefightingagain Wed 16-Jan-19 10:16:59

Ds is 6. We were told that he definitely didn't have ASD and that he had a cognitive delay (I think they just didn't want to provide support so used it as an excuse). You can't really assess an infant's cognitive abilities at this age as the assessment tools have limited predictive value. Interestingly ds did toilet train at 3yrs 4 months but his neurotypical sister trained much later and other children I know did too. We have had to fight like crazy re EHCP. NHS wouldn't diagnose or even put ds on an ASD assessment waiting list so we had to get private reports.

starfishmummy Wed 16-Jan-19 10:26:49

As someone with a 20 year old...

If I have any advice to give its to say STOP comparing to the "average" child, to what the books say, to other kids of the same age... Don't focus on "'they're xxx months behind" because there's no point. They are what they are.
They may catch up in some areas, they may not in others. Focus on thebowrson they are and on helping them to reach their potential.

HugAndRoll Wed 16-Jan-19 10:33:04

Well said, @starfishmummy I wish I'd added that to one of my posts. Honestly, I wouldn't change my children for the world they really are the best.

Ayd7815 Wed 16-Jan-19 10:41:53

Hi HugAndRoll, thanks for your reply!
I think your right i am so worried and the school has made it harder on me. I'm in Berkshire, England. The school think they can get one for him so I guess that's why they are pushing for it. Do you think if I can get the plan I should just take it and push for it too? Maybe it will help his confidence and may not need it in a few years? Especially if he does ok academically and his physical skills improve as times go on?
Do you think its likely my son is also on the spectrum?
Why do you think your son wont cope without one in high school? If he has done okay up until now?
With regards to the three step instruction yes its good he can do this and most of the time he does it without and verbal prompts but when he's tired or doesn't want to he needs to be told a few times haha!

Other things are when I ask him to get his shoes he will look for them around the room and find them and bring them to me if they are in the same room.

I'm worried that my son may have a cognitive disability because he’s delayed, I don’t know if he will be fine or if there's a underlying issue. At the moment I'm just guessing.

He hasn’t had any tests like these yet, that you have described. I will ask SALT for a assessment, but when they did assess him when he was 2 when I told them the things he does do they didn’t sound concerned and were positive. He was following simple instructions at that time. and was babbling but had very little words and had feeding issues. That was their main concern. They didn’t even suggest a test?

Its great your son has mostly caught up too despite the few areas left. You say your son has a coordination disorder? What does this mean for your son? How does this affect him?

Thekidsarefightingagain Wed 16-Jan-19 10:48:08

Starfishmummy and HugandRoll. So true! When ds was 3 I worried so much but now I just see an amazing child. He's absolutely hilarious, easy going and I'm amazed at his work ethic.

Ayd7815 Wed 16-Jan-19 10:54:53

@Thekidsarefightingagain, thanks for your reply, I hope my son can also catch up with the right support in place too despite whatever's he's diagnosed with.

How is his speech now? has that caught up also?

That's so interesting about the potty training, I think im worried because his head teacher said its very unusual to not be potty trained in reception he's 3.3 and summer born so he will be in reception when he's just turned 4. If he was born on time he would have another year to learn. How did you know when your DS was ready to be trained?

Ayd7815 Wed 16-Jan-19 10:57:03

@ starfishmummy thanks for your reply!

I totally agree and I wasnt this frantic until his school pointed out all these things that sent me into a spiral of worry. I was so posative before about his progress.

Thekidsarefightingagain Wed 16-Jan-19 11:19:52

He has a receptive and expressive speech & language disorder and hasn't caught up with this but NHS S&LT actually discharged him so it's not as if he's been given the support he needs!! Xx

Thekidsarefightingagain Wed 16-Jan-19 11:36:40

Forgot to ask - have you thought about deferring his school entry for a year as he's summer born?

Ayd7815 Wed 16-Jan-19 11:57:46

@Thekidsarefightingagain

That's annoying when they discharge you when you still need support. How delayed is he in this yet? Is he speaking in sentences etc? Mine isn't yet sad His receptive language is much better then speech.

I have thought about deferring school because he was meant to be in the year below anyway. But I was told I can do this but when he reaches senior school this will be a problem that he's not in his chronological year and will have to skip a year. I not sure he could handle that.. So I wonder if I should now. What I can do is keep him in Nursery till Jan2020 and he will only have half a year of reception and then go into year 1 in Sept 2020.

Can I ask what the signs were when you new your DS was ready for toilet training. ATM my son hold his nappy when I ask if you have done wee/poo and he has dry nappies for more then 2 hours sometimes. These are the only signs I have seen.

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