Help: My daughter has serve global development delay... - Mencap

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Gemsteve77
Gemsteve77
10 Replies

My daughter has serve global development delay and I was wondering if there is any help on what we can do and what support As I am a mum and a fulltime carer

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Sarah_Mencap
Sarah_MencapAdministrator

Hello Gemsteve77

Welcome. I know there are quite a few other families on here affected by global development delay. You might find some of these posts helpful -

healthunlocked.com/mencap/p...

healthunlocked.com/mencap/p...

ndmcleod, Charlie2750, lqrt43 Breangel and CJCGDD - can you offer any words of wisdom about where to find support and information about GDD?

If you'd like to chat to someone about this our helpline may be able to help - 0808 808 1111

or helpline@mencap.org.uk

You may also find these organisations helpful

* SWAN

-https://www.undiagnosed.org.uk/

* Brainwave

- brainwave.org.uk/

* Tree of Hope

- treeofhope.org.uk/

* Understood - understood.org/en

As a full time carer is also really important to make sure you get the support you need. Do you meet up with any other parents in a similar situation? It might be a good idea to see if there is a carers centre in your area, and also a parent carer group.

Best wishes

Sarah

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Gemsteve77

No I haven't met up with other carers

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Spujo

Does your council authority offer carer assessments? They will have a wealth of information

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Gemsteve77

How will I find it out

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49Twister

Get in touch with social services in your area. If you have a carers centre in your area give them a ring, they will be able to point you in the right direction.

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Gemsteve77

I'm with carers in herts and I have the carers passport

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Charlie2750
Charlie2750Community friend

Hello Gemsteve77

My son has severe learning disabilities caused by GDD. He is 32 now and attends a day centre daily with lots of other people.Social Services foot the £50(aprox) daily fee for 5 days care via Direct payments.

You have not said how old your daughter is and what support through health you have had to say how you came by the diagnoses?

My son had a rough start in life and when the Peadiatrician reported he had development delays we thought it was just a delay and that he would catch up.They don't mean that though.We didn't struggle too much in the early preschool years because everyone is growing but he went to a special nursery group called an Opportunity Group.

When school started we looked at the local primary school but settled on a school for moderate LD. He had a "statement" but I gather it is called a health and social care plan now.Getting a statement ensures you get the support and schooling your daughter needs.It could be one to one help and speech therapy etc. Dont expect too much , and don't demand too much because there are thousands of parents needing the same help.Please do things slowly because putting too much too soon will frustrate all of you.After a couple of years my son wasn't making progress with reading and writing and was transferred to a special school for children with more problems.Some children have multiple and profound learning disabilities and spend most of their time in wheelchairs.

After many years at this school he went to a college at 19 for 5 years to learn more social skills etc.They students at the college helped looking after some farm animals and gardening. After 5 years there he now attends a day centre 5 days a week.We have tried respite but not for us at the moment.Thomas walks, talks and dresses himself and feeds himself however his hand are not well coordinated and he cant master the skill of using a knife and fork.He needs me to shave him and brush his teeth and help to bath him.He needs pulling together and he wears Velcro shoes and no zips or buttons on trousers.

He is as good as he will be however when I get a few spare minutes and can prize him away from the goggle box I will try again with writing.I failed to mention about benefits but that is another challenge.

I hope our story will help. If you need more help while I cant help you I can offer written support and tell you how it is for us.

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Gemsteve77

Our daughter will be 5 on 1st March and she get a 121 at school at the moment and now we have to find another school for her in September .

I never knew that I was pregnant at first with our daughter as I had no signs and I thought that I was putting on weight until I went to hospital with stomach pain and then they done a test at the hospital and said that I was 36 weeks pregnant and I had a emergency csection because she was distressed and so was I so had her on the Sunday then cam out on the Tuesday then went back in to hospital on the following Sunday and she was doing the weird fits and we was in hospital for a week and she has 2 eeg 2 lumbar punctures and a MRI plus been on phinabarbatal medication from 6 days old till July 2015 and then they class it a 5day fit .

Our daughter was a very late Walker so she didn't start to walk when she was about 1 years old and now she can't walk properly so she has to hold our hands all the time and that's why she is in a normal pushchair all the time and she trips over all the time and unsteady on her feet , she has a convergent squint and that is permanent , she has hypotonia.

We had a genetic test done on her to find out what is wrong with her and they can't find anything at the moment so they are leaving it for 2-3 years time and go back on it again but all what they are going for is serve global development delay the school has said she is the age of 18-24 month old and the speech and language said she is 20-24 month old and she did have home schooling before she started nursery and that stopped.

We love our little girl and no one can't find answers on what's wrong with her and why she is behind a lot plus she is our first child .

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Charlie2750
Charlie2750Community friend

Hello Gemsteve77

Don't look too hard for answers because you can fill your selves up with guilt and blame A lot of parents look for answers or a diagnosis but even with an explanation it doesn't help because as parents we just get on with it.

My wife had a selective ceasarian section at 36 weeks because she is a shorty with size 4 feet..She had this procedure done 2 times before and our other boys are fine.There was nothing wrong at the surgery although while the anaesthetist did a lumbar puncture for spinal he said to the midwives don't move her, but they turned her to put a catheter in the bladder.Her blood pressure dropped and she reported to me afterwards that she saw a bright light and found herself looking down!! Reported often by others as a NDE

As far as I'm aware everything else went well until later baby was finding it difficult breathing and after a lot of dithering they transferred him to a Neonatal intensive care some 70 miles away. He was taken by ambulance and with a doctor.The hospital in Pembury were brilliant .He was diagnosed with persistent foetal circulation. He also had to have a blood transfusion because of jaundice but they maybe couldn't find a match.. He was quite a big baby amongst all the others who were 24 and 25 weekers.

Global development delay I thought at the time was an expression but it is an entity and a diagnosis/condition.

When we all got home we looked after him but he was late walking and talking.

I will advise you now to apply for PIP which is an extra benefit and is not means tested.We applied late for mobility component when he was about 8 years old.The form suggest (with DLA) that your child needs more help than they would do than a child of the same age.Look carefully at her abilities which is difficult if this a first child but you may be able to compare with friends children.

With PIP you will get/may get enhanced mobility and can apply for a motability car.

We got mobility DLA at the time and bought a large 3 wheel trike.

He walks but I couldn't let him cross the road alone or go out to play with other children in the streets like when I was younger.

Best wishes

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Gemsteve77

I have DLA and carers allowance plus I am registered as a carer too I, i couldn't get the highest rate for DLA as it wasn't accepted

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