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anyone know about global development delay , i need help?

(13 Posts)
jollylala Thu 18-Sep-08 23:48:50

i was told 8 months ago that my 3 year old son has global development delay and is due another assesment from the co-ordonation team. he falls over all the time, has poor co[ordonation and is very particular about how things are done. his speach is also very patchy and ive still to hear a sentence from him. im not getting any help or assistance from anyone and its driving me mad.

BriocheDoree Fri 19-Sep-08 09:29:54

Hi Jollylala, Welcome to the SN board. I'm sorry to hear that you are getting no help with your son.
I'm bumping this for you as my DD's problems are different (language disorder) but there are several people on here whose kids have GDD so hopefully someone will be along later.

r3dh3d Fri 19-Sep-08 09:43:22

Hi there JLL.

Jargon varies from place to place so I'm not sure what a "co-ordination team" is or who exactly you have involved. Where we are, there is usually a "childrens' development centre" in one of the big hospitals and specialist paediatricians there who assess development. At this stage the first contact is usually with NHS.

Global Developmental Delay is a fairly standard bit of jargon, but it's a bit of a one-size-fits-all diagnosis - it doesn't tell you a cause, and it's absolutely no prediction of severity or how far therapy will help. It's not unusual at this age to get a diagnosis of GDD and then the paediatricians will do some tests to look for an underlying condition. Or they will refer you to the local geneticists to do the same thing. But even if they don't find an underlying cause, they still have a responsibility to give therapy for the symptoms.

The diagnosis is the NHS's responsibility. Therapy is a bit more spread out. Some of it is educational, some of it is NHS and some of it is voluntary sector.

NHS first. You should be referred to a SALT (Speech and Language Therapist) for his speech delay. I think you can self-refer if you can find out who to refer to, though generally the assessing paed would do this. His co-ordination will fall between Physio (eg strengthening exercises) & OT (practical stuff like getting up and down stairs safely) They in turn may refer on to eg Wheelchair Services when he needs a bigger buggy.

Education: I don't know if he's attending nursery or not at the moment. If not, he could be eligible for a thing called "Portage" which is a charity running home based therapy for preschoolers. They will visit eg once a week and teach you exercises and things to do with him. Their waiting lists can be huge; again you can self-refer so get onto that ASAP, with a GDD diagnosis they will come out and assess you, you don't need to wait for more info to come in. I found them invaluable because they know everyone and what you are entitled to and which schools are good etc, quite apart from the therapy itself.

If he's in nursery, every educational setting (including private nursery) should have a person called a "SENCO" who is in charge of making sure all kids with special needs have those needs met. So you need to meet with them and talk through extra support - if he has speech problems he may also have comprehension problems and benefit from a very structured day, for example. But if he is in a setting without prior experience they won't have the faintest idea how to help him so you will have to give them guidance as you get feedback from the other therapists.

Money - your main benefit is DLA - Disability Living Allowance. It's a strange benefit which works on the basis of grading a child's disability by working out what extra care he needs compared to others of his age. Depending on that they pay you a token amount which goes nowhere much against the cost of care and equipment etc etc. But the thing is it is the benefit which entitles you and him to other things - from a blue badge to recognition from Social Services to concessions at Legoland, so worth doing not just for the money. It's a nightmare to claim - huge and depressing form - but there is a definite knack to it and there are people in various organisations who will guide you through it. I hear Cerebra have a good guide on your website.

Um... what else? Brain running dry now, what have I missed, anyone?

If I have one overall piece of advice - keep talking and never ever refuse a referral. Your HV may be useless. But she may send you to your GP. Who may be useless, but he may send you to a paed. Who may be useless, but he may send you to a SALT. And the SALT may give you three simple exercises which transform your Son's speech. Or they may be useless but refer you to the OT .... that's how it goes.

Oh, and plug into somewhere like this - Mumsnet SN I mean - because you will find out 100 times more about all this stuff from people here than any professional you ever meet. We've been there. They (by and large) haven't.

Welcome aboard!

Romy7 Fri 19-Sep-08 10:33:10

do you have a date for your multi-disciplinary assessment? if not, i suggest you make a gp appointment and make a small scene... explaining you really want to start helping your boy reach his potential, but you can't do it without some expert advice, which is not forthcoming.

some places do have quite long waiting lists, but you should have had a letter at least confirming you are on the list. unfortunately, sometimes you do have to push a little to get into the system.

otherwise, what she ^ said grin

this time next year you will be moaning at the amount of appointments you have lol - it just takes a while to elbow your way in sometimes, as there's lots of 'need' and not a lot of nhs...

vjg13 Fri 19-Sep-08 11:20:39

My daughter has GDD and is now 10. She was diagnosed at about 2.

All good advice from Romy and r3dh3d.

We went to a massive amount of appointments, she had genetic studies, metabolic tests, MRI scans and no cause or syndrome was found. This was important to us at that time as she was our first child. She had fluctuating hearing loss and so loads of hearing tests and 3 sets of grommets. She had a squint which was surgically corrected but she has glasses and we did all the patching too. Also physio and SALT appointments and an OT assessment. We had the special needs play service which is similar to portage.

Once you get into the system this type of help should all kick in.

Now at 10 she is more coordinated and although has a strange running style(- like a spring lamb!) she rarely falls. Her speech and language are delayed still and unclear but we work on it all the time and it is improving. She is a kind, happy, very funny little girl who can swim, ride a pony and goes to Brownies and trampoling.

I have found you need to be quite forceful to get on all the waiting lists and get all the help you need but you will be able to do it.

I wish you and your family strength and good luck. smile

FioFio Fri 19-Sep-08 12:08:11

Message withdrawn

misscutandstick Fri 19-Sep-08 13:22:07

welcome!

the girls here are fantastic, with loads of very good advice [thumbs up icon] to R3, and a very good shoulder in times of need. DS5 has GDD too, though hes only 2.4y. Apointments for us currently, are completely out of hand shock but its good that help is out there, but you reallly need to shout for it. Good luck, and {{{HUGS}}} for your journey. XXX

MommyUpNorth Fri 19-Sep-08 14:07:26

Great advice already here, especially from r3dh3d! DS3 has GDD, and he is 21 months old. I think he was diagnosed at 6 months old (or thereabouts) with developmental delay, and then changed over to GDD at about 9 months.

I'm not sure I have any other advice really, so I'll just say another 'welcome'!

mm22bys Fri 19-Sep-08 14:31:15

Hi,

My DS2 has GDD, no known cause, no diagnosis, just loads of tests, including MRI, ECG, EEG, blood, urine, lumbar puncture, muscle biopsy. He has hearing and vision deficiencies, although they are improving.

We found it hard to get him assessed, we were worried about him from when he was born, but he wasn't properly assessed till he was 10 months and by then they said he was "severely DD". Worst day of our lives.

He has had heaps of appointments (at least 3 a week most weeks), but medically they are slowing down now that the testing phase is almost over.

Therapy has really helped him, but it is very patchy in our area, so we have paid to have various assessments and therapists treat him.

His speech is still very delayed, but he is coming along in other areas (he's just started toddling a little - he's 22 months today!).

All the best to you and your DS

Arabica Fri 19-Sep-08 23:05:34

Hi, welcome to mumsnet. Another GDD diagnosis here. DD is 2 and has severe speech and language delay, slight hearing loss, a squint, etc etc! We've been in the system since before she was born because some excess fluid was detected in her brain at the 20-week scan.
Echoing previous advice, you need a paediatrician's input asap. Have you found a nursery or school you want your son to attend? You might want to get the statementing process underway so that the council can allocate enough money and staff to helping your DS in the classroom.

FanjolinaJolly Fri 19-Sep-08 23:54:55

Hello,my dd was initialy assessed as having GDD,R3 post was excellent at explaining it.Everyone has given good advice,just want you to know you are not alone xxx

2loudboys Sat 20-Sep-08 19:10:14

Hi there, another GDD here. My ds1 (now nearly 8.7 years) has severe speech & learning problems, hypotonia, hypermobile joints, behavioural issues, and has just started wearing glasses (though they are off more than on at the moment grin). He is also one of the sunniest and most sociable little boys I know grin grin.

Can't really say more than R3 has so clearly put it. But DO look at getting statemented as early as possible. I wouldn't say it makes life easier, but it is good ammunition to have when it comes to getting the support you need.

Arabica Sun 21-Sep-08 22:49:47

Sorry for hijack, but 2loudboys, when did your DS' behavioural issues begin and how did they manifest themselves? DD is now 2 and bites/pinches me: I am worried she might attack one of the children at nursery one day, before I've learned how to get her to stop!

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