Children with Developmental Delay

[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]

 

[izakyboy]

Hello you all, Reading your posts bring me.back. I think I may be a.little ahead of you. 14year old twins. Both autistic, v different. One had GDD initial diagnosis. Allow.yourselves the time to grow with the challenges and expect to feel down too. Life goes on regardless. My God time has flown by in this house. My other son, 19 is on spectrum.too so it's all types of autism here. The best I can say is we live 'along side it', it shapes everything but does not dominate. We try most things and even travel too. Dare I say, we are happy. I think I am the parent I was always meant to be. If your children are happy you are doing a super job. They.will learn nothing if not happy.
Go easy on yourselves

 

[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 shit 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]

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

 

[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

 

[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 have things been now he's a bit more time in his routine?

Much better thanks. He’s had a touch of the cold but he’s been fine to go to school. He’s getting more involved in getting ready - he’ll get his shoes and keep me right with the order I’ve to dress him in .

His intentional communication is improving (he got the milk and bowl out to show he wanted porridge for breakfast) so I’m feeling hopeful. I didn’t know what school could do to unlock things but something is working.

 

[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]

Parents of ASD children. Just how on earth do you cope? I am so worried for a friend who just can’t accept her little ones path. Particularly struggling with daily meltdowns, no communication whatsoever so little understanding yet of what causes his meltdowns or what he does/doesn’t like. I feel very helpless and don’t feel like I’m supporting enough

I posted Welcome to Holland as I had to remind myself that wishing my son was neurotypical/at the correct stage developmentally was not only pointless, it was stopping me seeing the good things in our lives.

My son was diagnosed at 3 1/2, he was 6 last week. He has Autism and Global Developmental Delay and just now, the latter is the biggest hurdle for us. The uncertainty is crippling for me, it’s not something I deal with well. In saying that, my level of acceptance has improved over time - the irony? I am in a 12-Step fellowship which is based on acceptance being the key to peace of mind!

My son went to a developmental nursery and some of the mums from there are in a What’s App group. That has been a life saver for me. I can be honest and know that they’ll understand. We support each other and celebrate the victories too. There are a lot of ASD groups from my own area, maybe your friend could join some? Or if her child is in a supportive setting, could she set a What’s App group up?

The Health Visitor played a huge part in the process for us. I appreciate the last two years have changed things HV wise and maybe your friend’s child is at school so that wouldn’t work but she set the ball rolling in times of diagnosis and accessing services. She referred us to everyone we needed to see and she was brilliant. In Scotland, once your child goes to school their Head Teacher becomes the ‘named person’ but I’m not sure how it works elsewhere.

If the child is at school, are they in an appropriate setting for their needs? I know this is a huge issue (our council has an inclusion policy so far too many kids are in the wrong environment) and your friend may have to fight. Do they have a Paediatrician assigned to them? It’s different all over the country but in Scotland, we were under a Community Paediatrician until my son went to school.

Does your friend have a good support network? We had to adapt quickly and we’re a good team (my husband has a totally different outlook on things). It’s important she has people she can be honest with (sounds like you come into that category). It’s ok to grieve; I still am it’s just not as acute. It’s ok to feel the family has been cheated and that it’s just unfair. If your friend keeps her feelings to herself then they will fester. She is not a bad person for wishing things were different or getting frustrated or crying a lot, even if she thinks she is.

My son is non-verbal. We have been lucky that he’s been able to indicate quite well what he needs since he was little but that’s coming on leaps and bounds since he started school. Speech and Language Therapy have been the most disappointing part of the process for us (we’re on our fifth Therapist in 2 1/2 years) but now he is able to point to his teachers what he wants on a picture board and understands that’s what he’ll get. We’re lucky he goes to an ASN wing at school and is in a class of 8 with 4 members of staff. Nobody can say he’ll talk but they can’t say he won’t either. The intentional communication is coming on leaps and bounds. Maybe your friend’s child could understand Makaton? It’s never worked for my son but has for other kids I know.

Meltdowns are so tough, and distressing for everyone. It’s maybe coming from frustration or under-stimulation/over-stimulation. Or it could be something in the environment - too light/too dark? Too noisy? I went on a sensory workshop put on by our Occupational Therapy Dept at the kids hospital, it was interesting. Some can feel things opposite - my son hates getting his haircut and that maybe because of the falling hairs we aren’t aware of feel quite heavy and sharp to him.

Does your friend work? If so, is she aware of what she’s entitled to as an unpaid carer in terms of time off for appointments etc.

Are they claiming what they’re entitled to? My son is on Disability Living Allowance. The form is awful, having to think of the worst case scenario for each question but it might make things easier. Before my son started school we were going to use it for private SALT but the waiting lists are huge. Now most of that money goes on feeding my son’s addiction to berries and expensive scampi .

It is a really, really tough road. I have no other children so my parenting experience is solely autism and GDD and that overwhelms me sometimes. Many a day I have a cry because my son is still in nappies at 6. But Holland is beautiful. When we see my son picking what he wants to watch on his iPad or putting his rubbish in the bin or coming in for a cuddle then that fuels me to carry on. And we just don’t know what the future holds - I have to work on accepting that good things will happen but I know they will. Your friend will get there and they’ll find their rhythm. But it will be easier if they’re getting the help they’re entitled to. Sending your friend lots of love

 

[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

 

[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

 

[ManicMayz]

@LennyBriscoe Was just thinking about you! Hope half term has gone/is going well x

 

[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 shit 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]

@LennyBriscoe Was just thinking about you! Hope half term has gone/is going well x

We had a lovely few days, thank you! He was reluctant to get ready yesterday morning but I think that was much to do with my husband starting work later (him being around threw him). But he was fine when the bus came and he was no bother getting ready this morning.

How are you guys getting on?

 

[LennyBriscoe]

Glad your son has settled back into school well Hopefully being back into that routine will help everything! Do you think Christmas was a bit overwhelming for him this year? My little boy had a funny couple of weeks he had a virus of some sort, nothing serious but he barely played or made any noise for days. The dr didn't seem too worried but I was! Then once that shifted he sparked back and has a good few days! He's seen the physio again and is going to get a lycra bodysuit to help with his sensory issues and hypotonia. I'm hoping that will help a lot! X

He had been ill the week before and had to stay off until we got the results of a PCR (just a cold) so he was off/back/off again. Christmas was fine - he was probably more into Christmas than he’d ever been before but new year was tough - he was missing his routine, his dad was off and I was at work and it was pretty grim. We’re hoping to get him into the play scheme he goes to in the Easter holidays.

Being under the weather I think does have a huge impact on them too I think. My son can’t tell us (not even just in words but he won’t point out if he’s got a sore anything).

That sounds amazing, let us know how he gets on with his bodysuit

Hello you all, Reading your posts bring me.back. I think I may be a.little ahead of you. 14year old twins. Both autistic, v different. One had GDD initial diagnosis. Allow.yourselves the time to grow with the challenges and expect to feel down too. Life goes on regardless. My God time has flown by in this house. My other son, 19 is on spectrum.too so it's all types of autism here. The best I can say is we live 'along side it', it shapes everything but does not dominate. We try most things and even travel too. Dare I say, we are happy. I think I am the parent I was always meant to be. If your children are happy you are doing a super job. They.will learn nothing if not happy.
Go easy on yourselves

Thank you for posting, it’s so great to hear from someone further along in the journey. It’s giving me hope for the future. I hope to be the mum I was meant to be someday, just now my head is telling me it’s all my fault and I can see that he prefers to spend time with his dad and that’s taking a bit of adjusting.

This week has given me hope too with the positive changes

 

[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]

View attachment 1085288

This is lovely

Parents of ASD children. Just how on earth do you cope? I am so worried for a friend who just can’t accept her little ones path. Particularly struggling with daily meltdowns, no communication whatsoever so little understanding yet of what causes his meltdowns or what he does/doesn’t like. I feel very helpless and don’t feel like I’m supporting enough

Hi @Giftinghell How old is your friend's son and is it a recent diagnosis? There is definitely a grieving process when your child has a condition like asd. I think it's a lifelong grieving process because at every birthday and milestone there will always be a reminder of what could have been. It's a big adjustment to make in you're mind and it's always coupled with guilt for feeling sad or wishing things could be different.

I think the major thing is having a good support system. You being there to have a cup of tea and a chat with will mean a lot. I'm not sure what's available locally but see if there are any support groups for parents with children with similar conditions. There's a local group in my town who meet up every couple of weeks (parents and kids) and it's nice to be in environment where you can just enjoy your child without worrying about questions/looks. I'm also on a few fb groups, I'm not massively active on them but I find it helpful to read others posts and get tips and ideas.

When my son first received his diagnosis (he has 2x genetic conditions, global developmental delay and suspected asd) my gp prescribed me valium as I wasn't sleeping and constantly had dark thoughts and anxiety. I really feel like this coupled with some sessions with my therapist made the biggest difference in the early days. I needed that bit of help to rest and get my brain out of the cycle it was in. Your friend might be completely different but I really needed that input.

My son doesn't have tantrums in the traditional sense but sometimes he can scream and cry for hours and it can be difficult to understand what is causing the distress. The biggest thing that helped here was understanding his sensory needs. He's sensory seeking and now has an at home therapy plan which includes lots of things to meet this need. He's a lot calmer and happier now!

There's an amazing book called "The reason I jump" which was written by a 13 year old boy with non verbal autism where he answers questions about what its like to have autism. It's a really uplifting and sweet book which gives a great insiders perspective of living with asd. I've put a couple of screenshots.

 

[ManicMayz]

Much better thanks. He’s had a touch of the cold but he’s been fine to go to school. He’s getting more involved in getting ready - he’ll get his shoes and keep me right with the order I’ve to dress him in .

His intentional communication is improving (he got the milk and bowl out to show he wanted porridge for breakfast) so I’m feeling hopeful. I didn’t know what school could do to unlock things but something is working.

Wow that's amazing what a super star! Really great communicating Obviously doing him the world of good!