Children with Developmental Delay

[LennyBriscoe]

I have one child and he has Global Developmental Delay and Autism. The GDD presents the biggest hurdle; I don’t know what age he is at but he is non-verbal, can’t dress himself, isn’t toilet trained etc. He’s 5.

He is at a great school and we’re hopeful they will be able to open some things that are locked.

I appreciate that in all circumstances all children are different and know that he will develop in his own pace but I’m looking for a bit of hope from anyone who has experienced this. I’m struggling to deal with it to be honest. He’s such a beautiful wee boy and he’s really pretty happy most of them time but that makes me feel worse for not just dealing with it. Thanks in advance

 

[Valentina]

I don't have any experience but I just noticed that no-one has replied to you. I can only imagine how overwhelming it must be for you.
I had a look on the MENCAP website and I think they have some support groups which might be helpful for you.
I also found this site https://contact.org.uk/help-for-fam...tion/all-about-diagnosis/developmental-delay/ At the bottom of the page there is a link to some support groups.
You might be able to talk to people who also have children with developmental delay. Maybe, knowing you aren't alone will help you in some way.

I think you're allowed to 'not deal with it' sometimes and try to be kind to yourself. You sound like a great mum.

 

[twinkleunicorn]

My eldest was diagnosed with GDD, I just had an inkling that there was something else, and she was referred for genetic testing. She was diagnosed with a specific syndrome, which didn’t change things but it opened doors for OT/PT/SALT which I’d previously had to fight for

 

[LennyBriscoe]

I don't have any experience but I just noticed that no-one has replied to you. I can only imagine how overwhelming it must be for you.
I had a look on the MENCAP website and I think they have some support groups which might be helpful for you.
I also found this site https://contact.org.uk/help-for-fam...tion/all-about-diagnosis/developmental-delay/ At the bottom of the page there is a link to some support groups.
You might be able to talk to people who also have children with developmental delay. Maybe, knowing you aren't alone will help you in some way.

I think you're allowed to 'not deal with it' sometimes and try to be kind to yourself. You sound like a great mum.

Thank you so much for your reply, and for your kind words. I’ll check out the website too, thank you

My eldest was diagnosed with GDD, I just had an inkling that there was something else, and she was referred for genetic testing. She was diagnosed with a specific syndrome, which didn’t change things but it opened doors for OT/PT/SALT which I’d previously had to fight for

It’s not an easy process is it! We had genetic testing (I still shudder thinking of them getting blood from him) and nothing came up but we do get SALT. It’s just such a slow process and the uncertainty of it all gets me down.

I hope your daughter is getting on well. Thank you

 

[dancingqueen5678]

I have one child and he has Global Developmental Delay and Autism. The GDD presents the biggest hurdle; I don’t know what age he is at but he is non-verbal, can’t dress himself, isn’t toilet trained etc. He’s 5.

He is at a great school and we’re hopeful they will be able to open some things that are locked.

I appreciate that in all circumstances all children are different and know that he will develop in his own pace but I’m looking for a bit of hope from anyone who has experienced this. I’m struggling to deal with it to be honest. He’s such a beautiful wee boy and he’s really pretty happy most of them time but that makes me feel worse for not just dealing with it. Thanks in advance

I don't have any experience and I don't have kids so maybe this carries no weight at all but if he is a happy most of the time then I would say you're doing a brilliant job. It's not that you're not dealing with it cause you're dealing with it by being there with him every day and writing this thread. You're just going at his pace instead of making him uncomfortable. Also it's great that he's getting on well at school cause kids spend so much time there.

 

[LennyBriscoe]

I don't have any experience and I don't have kids so maybe this carries no weight at all but if he is a happy most of the time then I would say you're doing a brilliant job. It's not that you're not dealing with it cause you're dealing with it by being there with him every day and writing this thread. You're just going at his pace instead of making him uncomfortable. Also it's great that he's getting on well at school cause kids spend so much time there.

Thank you so much, I often forget that he’s busy being happy and I’m hurting my own heart by overthinking things! Thanks again, for your lovely words

 

[Giftinghell]

Can I ask how people end up with a GDD diagnosis rather than looking at an autism diagnosis. Have a wee family member struggling but should add he’s only 3. I just worry he’s being labelled autistic very early (by parents no one else) and it could be something else?

 

[LennyBriscoe]

Can I ask how people end up with a GDD diagnosis rather than looking at an autism diagnosis. Have a wee family member struggling but should add he’s only 3. I just worry he’s being labelled autistic very early (by parents no one else) and it could be something else?

We had noticed things at home and so did the private nursery my son went to. When we went for our 27 month review it was obvious he was not where he should be so our Health Visitor referred us to the Community Paediatrician. She made the diagnosis when my son was 3 1/2.

Because he had no words we went for a hearing test too, which was fine

Of course it’s possible to have one without the other. And in my son’s case the GDD is the bigger hurdle; he is laid back about a lot of things that other autistic children we know aren’t - routine and noise are two things he can cope with but he does jump and stim a lot.

Because my son was diagnosed quite early, it 100% worked in our favour as he got a place at a developmental nursery and then into the ASN school he goes to. But it sounds like it isn’t so cut and dry for your family member, and he is still quite young. A lot of people think that boys are a bit slower than girls when it comes to development. Hopefully they will have a good HV who can steer them in the right direction, as sometimes for parents they’re so involved, it’s hard to see the situation in its entirety. Best of luck

 

[Giftinghell]

We had noticed things at home and so did the private nursery my son went to. When we went for our 27 month review it was obvious he was not where he should be so our Health Visitor referred us to the Community Paediatrician. She made the diagnosis when my son was 3 1/2.

Because he had no words we went for a hearing test too, which was fine

Of course it’s possible to have one without the other. And in my son’s case the GDD is the bigger hurdle; he is laid back about a lot of things that other autistic children we know aren’t - routine and noise are two things he can cope with but he does jump and stim a lot.

Because my son was diagnosed quite early, it 100% worked in our favour as he got a place at a developmental nursery and then into the ASN school he goes to. But it sounds like it isn’t so cut and dry for your family member, and he is still quite young. A lot of people think that boys are a bit slower than girls when it comes to development. Hopefully they will have a good HV who can steer them in the right direction, as sometimes for parents they’re so involved, it’s hard to see the situation in its entirety. Best of luck

Thank you that’s very kind of you and helpful to hear. It’s very tricky. Hoping some progress is made to get him the right support in the next year or two. Covid really hasn’t helped, they’ve not been able to see a HV

 

[LennyBriscoe]

Thank you that’s very kind of you and helpful to hear. It’s very tricky. Hoping some progress is made to get him the right support in the next year or two. Covid really hasn’t helped, they’ve not been able to see a HV

Ah of course, that’s such a shame. They might have to be a bit more forceful than they would normally and hopefully they will have their concerns allayed, or get access to services if the wee boy needed them.

Our HV referred us to Speech and Language Therapy too, so we didn’t have to wait to see the Paediatrician for that. (Sadly that’s the one area that I feel we’ve been let down - we are on our 5th Therapist in two years.)

If your wee man hasn’t had even a phone call for his 27 month review, below is what I think is th standard questionnaire they use

https://www.mkchildrenshealth.cnwl.nhs.uk/media/1058/asq-27-month-24-month-asq-se.pdf

 

[ManicMayz]

I have one child and he has Global Developmental Delay and Autism. The GDD presents the biggest hurdle; I don’t know what age he is at but he is non-verbal, can’t dress himself, isn’t toilet trained etc. He’s 5.

He is at a great school and we’re hopeful they will be able to open some things that are locked.

I appreciate that in all circumstances all children are different and know that he will develop in his own pace but I’m looking for a bit of hope from anyone who has experienced this. I’m struggling to deal with it to be honest. He’s such a beautiful wee boy and he’s really pretty happy most of them time but that makes me feel worse for not just dealing with it. Thanks in advance

How are you and little one getting on now? My 2 year old has GDD and a genetic syndrome which means he will need lifelong care and will likely always be non verbal. I've found this time of year quite hard as friends with similar aged children have been sharing videos of their kids last new years and this one to show their progress whilst my little boy has regressed and lost all speech and only just about regained a few steps.

I think when you're the parent of a child with additional needs there is always a bit of a cycle of feeling positive and then struggling with feelings of hopelessness. I hope you're all doing OK atm! Xx

 

[LennyBriscoe]

How are you and little one getting on now? My 2 year old has GDD and a genetic syndrome which means he will need lifelong care and will likely always be non verbal. I've found this time of year quite hard as friends with similar aged children have been sharing videos of their kids last new years and this one to show their progress whilst my little boy has regressed and lost all speech and only just about regained a few steps.

I think when you're the parent of a child with additional needs there is always a bit of a cycle of feeling positive and then struggling with feelings of hopelessness. I hope you're all doing OK atm! Xx

I have found the Christmas and New Year period this year really tough, even though we had our most positive Christmas in terms of my son having a tiny bit more interest than previous years. He’s definitely found the holidays from school harder too, probably because we had to isolate waiting for PCR results for him just before the broke up.

I have definitely stayed off Facebook more this year, I find it so difficult to not compare. I can definitely identify with the cycle of positivity and hope with the lows of “I’m not sure I can do this”.

Your son is still quite young but have you looked into nursery provision for him? We’re in Scotland where you can get free nursery hours from 3 onwards and as I said in a previous post, we were fortunate to have a really good, proactive HV who supported us in applying at a developmental nursery. Our local authority have an inclusion policy so there is a woeful lack of appropriate facilities in our area. We’re starting to notice changes in my son from school and while there’s the obvious uncertainty, I really need to keep reminding myself that we just don’t know what the future holds

 

[ManicMayz]

It's such a hard time of year even when it's positive because the reminders that things aren't as you imagined they would be are everywhere! It's exciting that he's started to get more interest! My friend's child goes to a sen school and they started doing some recognition activities for santa and reindeer etc. and unwrapping activities in November to start getting the kids aware in the run up. I think I might try that next year

We're in England and he's not at nursery atm but is under the portage scheme. I'm not sure if the rules are the same everywhere but here they can't access portage if they go to nursery. The first thing his support worker did was help us to fill out the dla form (which i hadn't even thought about before!) Still waiting on the decision but that gives 15 hours free nursery for 2 year olds. The plan atm is to stay with portage until Easter and then start him a couple of days at nursery. There's no specialist nursery provision here but there is a good sen school that starts from reception so hopefully he'll be starting there once he's old enough and I feel that will be a big help for him.

Your right about the future! It's completely unknown how things will be. It's hard to stay in the moment and not worry but I think making a fuss out of their milestones helps.
We've luckily got a good hv as well which is a huge help!

Hope you were all negative on the pcr as well!
Xxx

 

[LennyBriscoe]

It's such a hard time of year even when it's positive because the reminders that things aren't as you imagined they would be are everywhere! It's exciting that he's started to get more interest! My friend's child goes to a sen school and they started doing some recognition activities for santa and reindeer etc. and unwrapping activities in November to start getting the kids aware in the run up. I think I might try that next year

We're in England and he's not at nursery atm but is under the portage scheme. I'm not sure if the rules are the same everywhere but here they can't access portage if they go to nursery. The first thing his support worker did was help us to fill out the dla form (which i hadn't even thought about before!) Still waiting on the decision but that gives 15 hours free nursery for 2 year olds. The plan atm is to stay with portage until Easter and then start him a couple of days at nursery. There's no specialist nursery provision here but there is a good sen school that starts from reception so hopefully he'll be starting there once he's old enough and I feel that will be a big help for him.

Your right about the future! It's completely unknown how things will be. It's hard to stay in the moment and not worry but I think making a fuss out of their milestones helps.
We've luckily got a good hv as well which is a huge help!

Hope you were all negative on the pcr as well!
Xxx

We are negative thankfully but taking the test on my son was hands down the toughest thing I’ve ever done - I felt like Steve Irwin (RIP) and that was with my husband there too…that’s one thing that’s giving me huge anxiety is the school phoning about a cough again. They definitely had a different definition of persistent to me but there’s nothing we can do - they won’t let any of the kids back without a negative PCR.

That all sounds really positive and it’ll be good for you to get a bit of a break too. Having good, supportive professionals made things a lot easier for us and sadly not everyone has the same experience. Once my son was at nursery, a few of us got together in a What’s App group and that’s been invaluable to me.

Ah the DLA form . Never easy but worth applying for - anything that makes things easier.

It’s weird, I’ve just been on one of the threads I follow (Cleaning with Mario - very different from Sean and Big O but hilarious ) and I saw the quote “comparison is the thief of joy” and it’s so true. I think part of the reason I get lost in Tattle is the anonymity means I don’t automatically compare my situation to others. And it’s been a welcome distraction at times that’s for sure.

I’ll keep everything crossed he gets a place in the SEN school, even if it’s a wee bit away yet. My son started school in August and the changes in that short space has given me hope xxx

 

[ManicMayz]

Can I ask how people end up with a GDD diagnosis rather than looking at an autism diagnosis. Have a wee family member struggling but should add he’s only 3. I just worry he’s being labelled autistic very early (by parents no one else) and it could be something else?

With us i suspected autism and had to badger the HV for a good couple of months before they agreed to see him. When they did they were really apologetic and said they weren't allowed to visit families unless they'd called a certain number of times once we were seen though the ball started rolling fairly quickly. We were on a waiting list for the paediatrician and got an earlier appointment on a cancellation. They diagnosed GDD and then referred to salt, ot, physio and genetic testing. The early intervention autism team don't take referrals here until their 3 and this team doesn't officially diagnose though and has a wait and watch approach (the waiting list for an autism assessment for school age kids here is ridiculous! So I'm not sure how much of the wait and watch approach for toddlers is due to lack of capacity)

We are negative thankfully but taking the test on my son was hands down the toughest thing I’ve ever done - I felt like Steve Irwin (RIP) and that was with my husband there too…that’s one thing that’s giving me huge anxiety is the school phoning about a cough again. They definitely had a different definition of persistent to me but there’s nothing we can do - they won’t let any of the kids back without a negative PCR.

That all sounds really positive and it’ll be good for you to get a bit of a break too. Having good, supportive professionals made things a lot easier for us and sadly not everyone has the same experience. Once my son was at nursery, a few of us got together in a What’s App group and that’s been invaluable to me.

Ah the DLA form . Never easy but worth applying for - anything that makes things easier.

It’s weird, I’ve just been on one of the threads I follow (Cleaning with Mario - very different from Sean and Big O but hilarious ) and I saw the quote “comparison is the thief of joy” and it’s so true. I think part of the reason I get lost in Tattle is the anonymity means I don’t automatically compare my situation to others. And it’s been a welcome distraction at times that’s for sure.

I’ll keep everything crossed he gets a place in the SEN school, even if it’s a wee bit away yet. My son started school in August and the changes in that short space has given me hope xxx

Oh gosh I can imagine! Poor little guy! And pcr tests can take so long to come back as well!
I think I'm the same with tattle its a great distraction! As are Sean's bin marche outfits and Big O's modelling poses
I'm just praying 2022 does get a little bit easier with the whole covid situation! Hard to develop a steady routine when things are constantly up in the air and being cancelled. I guess we also have to remind ourselves we're doing all this in a completely bonkers time in history! So deserve a good pat on the back for that if nothing else! Xx

 

[Soflora]

Hi Everyone,

First time posting on this thread, my son has just turned 3 and has had the first part of his autism assessment with the speech and language therapist that we see and we are having the final one towards the end of January with her and someone else from the children's centre we have here, does anyone know what this involves? I think its like a nursery setting?

I noticed my son was showing signs of autism around the age of 1 as he would hand flap constantly (still does and jumps around all over) he still doesn't talk and has no idea about potty training, getting himself dressed and so on..
He bounces about all over, sleeps about 1am, has meltdowns about most things, i cant take him in a shop without him wanting something, if he cant get it he will go crazy! He is getting quite heavy too so its quite difficult if I'm on my own as i cant manage him sometimes when he's throwing himself all over. He's still in a pram too, i honestly couldn't take him out without one and he has no sense of danger.

My daughter at his age was completely different so i knew something wasn't right.

My son is at nursery during the week and he absolutely loves it and has really come on a lot since going. He follows instructions a lot more and can go and get his cup, coat etc.
Nursery have told me that he wouldn't be able to cope in a mainstream school which i knew anyway. I am hoping to get him in to a great SEN school near us.

I wondered if anybody else's children that are autistic are rough when playing with others?
If i take my son to a play area or the park etc he pushes children, hits them and can be nasty.
I don't like taking him places like this anyone as it made me feel awful when i had to explain my son had additional needs and didn't know what he was doing or when other children were calling him 'the devil child' etc.

I recently went to a family members house where they had a toddler who my son loves.
My son started getting a bit rough and the family members were getting concerned and were making remarks like 'watch him he might strangle him' .. 'hes like a boxer' ... 'he might pull the christmas tree down' .. 'is he always like this' ...
It made me feel so uncomfortable along with my daughter (11) and my brother that we left.
On my way home i started crying as it made me feel so tit that they were talking about my son badly right in front of me. Its been on my mind ever since.

They don't understand autism and unfortunately you cant educate some people.

Thing is if i tell my son off, which i do, its in one ear and out of the other and he just carries on. He has no idea and doesn't care at all.


Sorry for the rant

 

[LennyBriscoe]

Hi Everyone,

First time posting on this thread, my son has just turned 3 and has had the first part of his autism assessment with the speech and language therapist that we see and we are having the final one towards the end of January with her and someone else from the children's centre we have here, does anyone know what this involves? I think its like a nursery setting?

I noticed my son was showing signs of autism around the age of 1 as he would hand flap constantly (still does and jumps around all over) he still doesn't talk and has no idea about potty training, getting himself dressed and so on..
He bounces about all over, sleeps about 1am, has meltdowns about most things, i cant take him in a shop without him wanting something, if he cant get it he will go crazy! He is getting quite heavy too so its quite difficult if I'm on my own as i cant manage him sometimes when he's throwing himself all over. He's still in a pram too, i honestly couldn't take him out without one and he has no sense of danger.

My daughter at his age was completely different so i knew something wasn't right.

My son is at nursery during the week and he absolutely loves it and has really come on a lot since going. He follows instructions a lot more and can go and get his cup, coat etc.
Nursery have told me that he wouldn't be able to cope in a mainstream school which i knew anyway. I am hoping to get him in to a great SEN school near us.

I wondered if anybody else's children that are autistic are rough when playing with others?
If i take my son to a play area or the park etc he pushes children, hits them and can be nasty.
I don't like taking him places like this anyone as it made me feel awful when i had to explain my son had additional needs and didn't know what he was doing or when other children were calling him 'the devil child' etc.

I recently went to a family members house where they had a toddler who my son loves.
My son started getting a bit rough and the family members were getting concerned and were making remarks like 'watch him he might strangle him' .. 'hes like a boxer' ... 'he might pull the christmas tree down' .. 'is he always like this' ...
It made me feel so uncomfortable along with my daughter (11) and my brother that we left.
On my way home i started crying as it made me feel so tit that they were talking about my son badly right in front of me. Its been on my mind ever since.

They don't understand autism and unfortunately you cant educate some people.

Thing is if i tell my son off, which i do, its in one ear and out of the other and he just carries on. He has no idea and doesn't care at all.


Sorry for the rant

Speech and Language Therapy have been the biggest disappointment for us. When they were first involved, their standard main aim is to get the parents on a Hanen course, which is a Canadian model of teaching communication without talking - this wouldn’t be suitable for my son now, much less 2 1/2 years ago but I’m not sure what it’s like in any other areas of the country I’m afraid.

Maybe being rough around other kids is something they can work with at nursery? It’s fab he’s taking direction there and I’ve always found my son to be different in the other settings he goes to (school/Grandma and Granda’s). I can totally sympathise with not taking him anywhere, I’ve never tried to take my son to a supermarket when he can’t sit in the trolley because it would be chaos!

I’ve found things pretty tough this holidays, in fact my mental health has taken a huge blow. I only have one child so my whole parenting is about autism/GDD and I’d been working hard on accepting it as I can’t change it. But the time of school has been tough and I’m on edge wondering if school are going to be on the phone when he goes back saying he’s been coughing again. We’d built up a quick routine from starting school, and he coped well with the October holidays but this has been different. I find it really hard to deal with sometimes.

 

[ManicMayz]

Hi Everyone,

First time posting on this thread, my son has just turned 3 and has had the first part of his autism assessment with the speech and language therapist that we see and we are having the final one towards the end of January with her and someone else from the children's centre we have here, does anyone know what this involves? I think its like a nursery setting?

I noticed my son was showing signs of autism around the age of 1 as he would hand flap constantly (still does and jumps around all over) he still doesn't talk and has no idea about potty training, getting himself dressed and so on..
He bounces about all over, sleeps about 1am, has meltdowns about most things, i cant take him in a shop without him wanting something, if he cant get it he will go crazy! He is getting quite heavy too so its quite difficult if I'm on my own as i cant manage him sometimes when he's throwing himself all over. He's still in a pram too, i honestly couldn't take him out without one and he has no sense of danger.

My daughter at his age was completely different so i knew something wasn't right.

My son is at nursery during the week and he absolutely loves it and has really come on a lot since going. He follows instructions a lot more and can go and get his cup, coat etc.
Nursery have told me that he wouldn't be able to cope in a mainstream school which i knew anyway. I am hoping to get him in to a great SEN school near us.

I wondered if anybody else's children that are autistic are rough when playing with others?
If i take my son to a play area or the park etc he pushes children, hits them and can be nasty.
I don't like taking him places like this anyone as it made me feel awful when i had to explain my son had additional needs and didn't know what he was doing or when other children were calling him 'the devil child' etc.

I recently went to a family members house where they had a toddler who my son loves.
My son started getting a bit rough and the family members were getting concerned and were making remarks like 'watch him he might strangle him' .. 'hes like a boxer' ... 'he might pull the christmas tree down' .. 'is he always like this' ...
It made me feel so uncomfortable along with my daughter (11) and my brother that we left.
On my way home i started crying as it made me feel so tit that they were talking about my son badly right in front of me. Its been on my mind ever since.

They don't understand autism and unfortunately you cant educate some people.

Thing is if i tell my son off, which i do, its in one ear and out of the other and he just carries on. He has no idea and doesn't care at all.


Sorry for the rant

We had an ages and stages review at the children centre and that was with a sen nursery nurse who basically just observed how he played and interacted with things/people in the room. But I'm not sure how similar that will be. It was quite laid back and no pressure on little one.

Where i live there's an autism play group at the community centre every week so the kids can enjoy playing with peers but everyone understands them and the parents don't have to explain constantly (which is knackering!) Is there anything like that near you?
Your right about telling off as well. If it doesn't register then it's just stressful for everyone! That's where there needs to be more support imo in managing those difficult behaviours where traditional methods don't work. My son went through a bitey stage and all I came up with was to repeat no and then move him out of the situation. I don't know if it worked or if he just grew out of it but I was constantly scared of other kids getting to close to him. With our relatives I just told them and moved him if he seemed like he was about to get nibbley. We're lucky our family are quite understanding about it. I can't imagine how horrible it must have been for you hearing comments like that! How are they generally? Do you think you could speak to them about it or would it not be worth the trouble?
Its fantastic that he's starting to follow instructions as well! I think he'll absolutely thrive once he's in a sen school also if you think with following instructions the more he understands that and cause and effect the easier it will be to put strategies in place to help manage the rougher play xx

Xx

 

[LennyBriscoe]

I think you hit the nail on the head @ManicMayz, when you meet a group of parents who just get it, it’s invaluable. I’m in a few Facebook groups local to me and a lot of the posts are not really applicable but there is comfort in knowing there are folk who just know.

Do you keep in touch with the other parents in the group Manic? I think I said yesterday, the What’s App group I’m in has been invaluable, and I’d never met any of them before.

 

[LennyBriscoe]

How’s everyone getting on, has there been a successful settling back into the routine after Christmas?

We had a very unsettled festive season, the most out of sorts my son has been. But he settled back into school very well and we’re noticing positive developments. I’m feeling a bit more hopeful about everything