Help and advice needed please

[silverfrog]

Hello, I've been lurking around this board for a few weeks, and have finally plucked up the courage to post. My dd (21 months)is a bit behind in development, and I have just had her assessed by a paediatrician. The report has come back with a summary of Global Developmental Delay and Social and Communication Skills Delay. Are these technical terms, or an interim assessment while they delve deeper? My dd has been assessed as having the developmental level of a 12 month old for most skills (although she is walking, climbing, running etc), and has been referred for speech and language therapy. The report did not say whether she will have any further investigation by paediatric specialists. Is this normal? I am worried that the report was not deep enough, and that enough has been seen to get her assessed as needing help, but that no-one is really interested in taking it any further. For example, she does not point at all, nor does she do imaginative play at all - surely she should be being checked for ASD? How would I go about ensuring that this is not overlooked? Also, is there anything other than speech and language therapy that she could be having to help her out?
I am not particualrly happy with the report overall (some parts of it are fairly innaccurate) and having consulted with BUPA we are about to embark on referrals and go private. We are in Kent - does anyone have any experience of who to use/avoid in the Kent area? Sorry, I've waffled on a bit, thanks in advance for anyone with any suggestions.

Hey Welcome and all that malarky!!
My ds was similar to you, mainly delayed in speech but a lot of his fine motor skills were delayed eg. drawing, feeding himself etc
He was given a provisional dx of global development delay with speech difficulties too. But then he was seen by SALTs and ED Pyschs and a few other professionals. He was then given another assessment with 5 people all in on it and he was given his ASD dx.
No help on the Kent area Im afraid, Im in Herts but justa few questions.
Has your dd had a CDC or CDAC? My ds had a few speech and language sessions and was started on IEPs at nursery then was given a more in depth CDAC which was when he got his DX.
Feel free to ask more questions, I'll try to answer then, maybe someone more knowledgable will answer also.

Just wanted to say hello. can't offer any advice as my dd has cp so not very good on global delay.
sure you will get loads of advice on here though:o

Hello, welcome and all that jazz

It may simply be that you have been given an interim report, once she's had a SALT assessment they may decide to involve a pead psych and various other agaenies and do a multidiscaplinary assessment [or whatwever your health authority does for dx..]

Can I ask what makes you concerned about the possibilty of ASD?
What is her behaviour like, is she sociable..

not pointing and a loack of imagniative play are obvious concerns but they could also be attributed to the speech delay and developmental delays.

any questiions and I'm sure osmeone will answer you, much better then I can!

Welcome to the SN board. :)

I have 2 boys with autism but know nothing about GDD. Sorry.

Has your dd had a full multi-disciplinary assessment yet or has she just seen the Paed?

Hi, thanks for all your welcomes and help.

Spursmum - sorry, but what are CDC and CDAC? My dd does sound a lot like your son - her fine motor skills are very delayed, and as for feeding herself! Let's just say she's happy to eat anyhting, as long as I'm feeding it to her!

Emmalou - it's mainly the lack of pointing/imaginative play that has me thinking ASD. I'm a total newcomer to all this, and just getting off the ground on trying to research it all. SHe is incredibly sociable, less so with strangers but not in a bad way IYKWIM, and everyone always comments on how happy she is. It's interesting to see that the lack of pointing etc could be attributable to developmental delays, as that's not something I've come across so far - just been spooked by the certainty in most of the stuff I've read that she is at high risk of developing ASD. She is definitely speech delayed too, but has started copying a few more sounds in the last week (not convinced she has attached significant meaning to them, but copying the sounds has to be a step in the right direction, surely?)

Coppertop - again, I'm not sure what you mean by a multi-disciplinary assessment, sorry. She has been seen by a paed for a full assessment, and they tried to get her to do all kinds of shape sorting, build a brick tower etc, but she doesn't have a clue, bless her. It's a major step forward that she has recently become interested in knocking down towers that I build...

Thanks again for your replies, it really makes me feel as though I'm not alone.

Sorry. A multi-disciplinary assessment is where each professional assesses the child - either together or separately. My 2 boys, for example, were assessed by an Occupational Therapist (OT), speech & language therapist (SALT), physiotherapist, and a Psychologist as well as the Paed. Each wrote their own report on their findings.

Before my DD got a diagnosis of sotos syndrome, a condition that causes overgrowth and delayed development, she was first assessed as having global developmental delay, both fine, gross and language.

She started having portage (where a portage worker comes into the house, say, once a week for an hour or so and works with your child on whatever skill - may be walking, puzzles, making similarities beween same/different, big/small, etc. etc.).

She was also referred for physiotherapy (although that didn't help much as she also has low muscle tone so was a bit of a "floppy" baby), occupational therapy (to help with every day skills).

I now know that the global developmental delay was due to a genetic condition that was finally diagnosed just before she turned 3.

I'd advise self referring or asking your HV to refer you for portage.
I know nothing about asd etc, but I think at 21 mths these types od diagnoses are developing, theya re not constant and are subject to change, are you under a review time of less than 3-6 mths?
A close eye should be kept at this stage as babies leap ahead in huge bounds and kiddies can get left behind really fast.
My dd has ebbed and flowed, she is now on a par with her peers after having been dx'd with delays and SL problems.
You should be seeing a paed at least 6 mthly I would suggest.
A deep report may not be possible as yet, but
I urge you to look into portage, it saved our life... honestly

Hi Silverfrog.

I'm really sorry that this is happening. I remember when we started the ball rolling WRT DS's diagnosis and I felt so alone. It does get easier though and there's usually always someone on this board who's been through something similar.

At 21 months I knew that my DS was delayed but nobody was particularly concerned so we didn't push for a referal. It's much better to be in the system, as you are, from as early as possible. It was an enormous shock when DS was DX with an ASD last year (3.8 yo) and it would have been easier to accept if he had been refererd earlier. I doubt if he'd have been DX'd any earlier but at least we'd have known what was on the cards.

I don't really have any advice for you but I agree that you should know what the next step is WRT further asmt's.

When DS was first DX'd the Paed. suggested that I contact \link{http://www.earlysupport.org.uk/Default.aspx?tabid=68\Early Support} DS was a bit old for their services but they were a big help to me. Basically they sent someone out to me who acted like a case worker until I felt ready to handle things myself. I was upset because after he was DX'd they organised a multi-disciplinary asmt for 8 months time, and I needed help much sooner than that. Early Support contacted the Child Development Centre for me and the appointment was brought forward. They also visited and offered to help with DLA forms, told me about ASD support groups in my area and were just generally sympathetic and friendly and I really needed that.

Sorry that I can't answer any of your questions but I just wanted to pass something on that might help you.

xx

Sorry for not replying yesterday. Ds was being a liitle toad and not going to bed!!
A CDC is a Child development check. A Paed tests your child to see how well they are going reaching all the usual targets, what they can and can't do.
A CDAC is a Child development assessment clinic. There can be up to 5 pros at this. My ds had an Ed Pysch, Autisic advisor, SALT, Paed and OP at his. They test your child to see if they have made any improvements in any areas, then decide between them on a dx.
I hope this has cleared things up a bit.

Hi Silverfrog

I,m new to MN too, but been about for a few weeks now.
My DS has global delay, particularly speech & language,mild CP & low muscle tone he was almost completely silent as a baby. He is 3 now & his delays are improving & doing well.
His first appt with the development paed gave the broad dx of global delay as he scored low on the mental development tests (building the blocks etc). But this assessment provides a baseline for them to monitor progress at subsequent assessments & provides a basis for referals. The SALT then provided a much more in depth language assessment which was fed back to the paed (along with ot & physio).
Unfortunately the frustrating thing is none of these things happen quickly. For us it took a little while but once they all get their heads together they were able to give a diagnosis.

Hello Silverfrog! Sorry, I don't know much at all about GDD...but my DS2 is 4 yrs old and dx ASD, and we're in the East/Mid Kent area.

I'd also firmly recommend portage, and possibly advise you to consider private SALT as we've found the NHS very stretched (19 month wait between referral and being seen for 6 sessions....).

We did have a private assessment done, but actual dx was NHS paediatrician.

Sorry, not being terribly specific (might not be in your area!!), but did want to say "Hi".

I could be wrong on the pointing thing! but I'm sure I've read/been told that delays in language and development can delay pointing because they haven't reached that stage yet.

I wanted to echo Piffle and tell you you can self refer.
Oh and If I mention CDC I mean Child development centre, its where we go for all our pead appointments and its where all our health Authority specialists are based.

I get very confused by acronyms and emoticons... I just pretend I know what they mean and Hope I aren't making my own up a lot of the time!

Hi Silverfrog

I think global developmental delay can be a kind of diagnosis in itself after all other avenues have been investigated but it is often just a description until more is understood about the cause. There are a multitude of causes for GDD I think.

My Ds2 was described as globally delayed at 26months. As he has got older it is clear he is much more delayed in some areas than others and so it isn't really a global delay. He has no diagnosis but strong dyspraxic and some autistic traits.

I definitely think you should push for any help that is available and if you can go privately do. I would also definitely recommend portage - see \link{http://www.portage.org.uk/\here}. They can help to chase up appointments etc and they can refer to other people as well as giving you some moral support at home. They are also of practical use in helping your dd to develop skills.

I am sorry you are going through this. It can be horrible especially at the start where you don't know where it's all going.