global delay help please

[Phoenix4725]

My son is now 3 and been told he has global delay his devlopment age is only 18 months.

With no sppeach at all also suffers with hypermoblity affecting his gross and fine motor skills.

After 12 months wait we now see pysio every 6 weeks speach the same (shes struggling to work with as cant articulate sounds only has gruno ook and ah) as for OT were still on list also awaiting oorthotics for pedro boots.

Im just lost as dont know where to turn my gp is useless I had to fight for a year to get him to even acknoledge might be problem , healt h vistor the same , and the specialist health vistor is so busy never get hold of her only 1 to cover a veery big are

[anxiousmax]

Hi Phoenix the waiting is a nightmare but keep making a nuisance of yourself, ring the OT dept & let them know you are happy to take any cancellations etc.
Also I think you can self refer to Portage & they are normally a very good source of info & knowledge.

Do you have a sn mother & toddler group in your area. Our local group is held at the local sure start centre. I'm not normally one for m&t groups but it is good to get together with other parents going through similar & also an opportunity for the children to play without being judged or compared by other parents.

I hope you get some more support for you & your ds

[BINAH]

I was like that, when I was that age.Improved with lots of physio, speech terapyad some help at school.It was hard, specialy wearing the boots until I wa 8 years old and having difficulty in playing with other children.
I am fairly all riht now, hae a beautiful 3 year old girl, have a degree and, although my coordination and balance is not great, you will see your little girl will succeed.
Time, love, care and strengh...
love binah.

[Phoenix4725]

hi thanks no idea what portage is??, he has seen a ep already, there talking of statment as hes ment start mainstream next year at tender age of 4 years 1 month.Which i would like delayed a year least give him a chance

The salt we seen seems worse than useless case of well he carnt articulate not even babby babbel ,so she says cant do anything with him.

There is not a surestart center near me were classed as rural and i dont drive plus the busses are not disabled friendly so were pretty much stuck locally but will look see if other groups , finding the isolation and lack of support from the professionals really hard

And yeah im finding older he gets the harder it is i get the but he looks normal y cant he walk well , talk etc

[Phoenix4725]

hi thanks no idea what portage is??, he has seen a ep already, there talking of statment as hes ment start mainstream next year at tender age of 4 years 1 month.Which i would like delayed a year least give him a chance

The salt we seen seems worse than useless case of well he carnt articulate not even babby babbel ,so she says cant do anything with him.

There is not a surestart center near me were classed as rural and i dont drive plus the busses are not disabled friendly so were pretty much stuck locally but will look see if other groups , finding the isolation and lack of support from the professionals really hard

And yeah im finding older he gets the harder it is i get the but he looks normal y cant he walk well , talk etc

[littleredcorvette]

Portage (according to their website) is:
'A home-visiting educational service for pre-school children with additional needs and their family'
Website: www.portage.org.uk

Josh had portage for over a year until he started school and our portage worker was fab .
She even came with us when we went to visit schools and she submitted a really in-depth report when we were going through the statement process.

[anxiousmax]

Phoenix your SALT does sound crap, thats why its called speech & LANGUAGE therapy, communication does not have to be speech.
My ds2 started SALT AT 2.5 & was totally non verbal, no babble, no sounds of any sort. He was still silent when he started pre school & last year when he started school at 4.5 he still had a significant speech delay.

I'm sure someone will correct me if i'm wrong but I don't think they have to start formal education until the term in which they are 5, so you should be able to hold you ds back if you feel that is the most appropriate thing for him.

My ds has just finished his first year at ms school with 1 to 1. We are rural & its a small village primary & it has been fantastic for him.
If it hadn't have worked out I would have been equally happy for him to go to the sn school as we used their pre school service.
Whereabouts are you?

[MehgaLegs]

High Phoenix - my DS4 is also 3 has GDD with a similar developmental age to your DS. He started walking in Jan when he also started at pre school. He attends a theraply session every Friday at our CDC where he recieves SALT and OT. He has portage every Tues. I am amazed at his progress. We have recently been told that he has a speech disorder rather than a delay but he communicates with soem words and lots of Makaton.

He also has hypermobility and hypotonia. No DX. He has had an MRI the results of which showed no apparent brain famge. He has all his chromosomes in the right order and number. We are waiting for an appointment with Geneticist to see if we can find out more.

[MehgaLegs]

Why have I written Hi as high? -Two glasses of wine on an empty stomach probably had a lot to do with it. Sorry

[brere1]

"The salt we seen seems worse than useless case of well he carnt articulate not even babby babbel ,so she says cant do anything with him."

This is the problem with many SALT's. What they don't seem to appreciate is that early language development is dependent on early, basic abilities such as the ability to make eye - contact, attraction to faces, the development of joint attention, proto-conversations, etc.

It really makes me mad. Where DO they get their training.

Andrew

[Phoenix4725]

hi ty all for your messages

im near Colchester but go to clacton for speech when she can see him ,asked about portage but been told dont cover and no funding available,

i been trying makton over a year now (i went learnt as we was waitibg for speech )

Now waiting see who playgroup appoints to be his aideim hoping someone whos used to working with special needs

[Arabica]

Hi, my DD (2 today!) has GDD and, judging by the amount of help she gets, it sounds as though you should be receiving many more therapies, such as regular blocks of speech therapy with a speech therapist experienced in working with children with GDD, occupational therapy, physio and play therapy. There should be a community paediatrician overseeing your son's developmental issues--are they aware of how long you are having to wait for all these therapies?

I would strongly urge you to apply asap for a statement of special educational needs, which will ensure that your child's needs are properly assessed. You need to ring your local education authority's special needs department and get the ball rolling. They should have a website. You also need to be talking to your local parent partnership, if you have one. They're normally based at child development centres. Don't wait for the playgroup or nursery to suggest stuff. You need this in place now. Early intervention can work wonders--DD would never have learned to crawl, let alone walk if she hadn't had physio at the right time.

[brere1]

Hi.

Sometimes it can be useful to 'trackback' on the development of language. By this I mean to reinforce the precursor stages to language development such as eye-contact, facial regard, primary intersubjectivity and the development of proto-conversations. This can sometimes help to restart the developmental process.

Hope this helps

[anxiousmax]

Hi Phoenix,
Which hospital do you use? We use Ipswich & the therapies & support for my ds2 has been fantastic (well except SALT but communication wasn't his biggest problem).
Just wondered if Colchester is struggling to provide the services you need would your GP refer you to Ipswich (depending which side of Colchester you are the travel distance wouldn't be much more).
It may be worth asking, the waiting lists aren't too long at Ipswich.
I think Portage have a branch in Ipswich so it may be worth ringing them direct to see if they would cover your area.

As for playgroup has the pre schoool area SEN officer been involved if so ask what minimum qualifications/experience they will require, it may just get them thinking!

[Arabica]

I'm really annoyed on Phoenix's son's behalf that he has (by the sound of it) been getting such a rubbish service. A keyworker could help with all this but I expect she hasn't been offered one.

[anxiousmax]

Totally agree Arabica, Ipswich CDC have a family co-ordinator who will chase services & speed up things. Actually she was very good at just listening to me moan!

[justdontknowanymore]

What is a keyworker?

How do you get one?

What level of therapy is reasonable to expect local services to provide? Once a quarter? Once every six weeks, once month? Twice a week?

[anxiousmax]

tbh we only found out about our keyworker/co-ordinator after ds2 was refered to cdc for ASD assesment prior to that I had been doing it all myself. He had a paed from birth as he was very prem & all the other professionals came on board as needed, it was only once the psych got involved that they decided on a multi disciplinary approach to be sure that he was getting what he needed.

The frequency of appointments changed depending on his needs.
Physio was involved from birth & was seen weekly between about 6 & 9 months & then went to 2 weekly & then monthly ds2 is 5 now & we see physio every 3 months but she has set up exercises for the school to do with him.

SALT was always Crap, even when consultant requested increase from 6 monthly review & wrote to head of SALT complaining that ds2 wasn't getting any therapy things didn't get much better.

Hydro was weekly but he hated it

OT was fantastic regular reviews & exercises etc initially & then a year of weekly group OT.

Orthotics good
Wheelchair services, no waiting list
Psych very thorough & useful in put with school
Paed appnts now every 6 mths

I'm sure there is more but can't remember

[Phoenix4725]

Hi after reading about portage i asked but it not available in my area less go private and unfortunatley we only have 1 special health vistor and shes so busy all we manged to do is talk on phoone once,I have requested more speeach but been told no none available due to severe staff shortages .

As for wheelchair services we can get referal without Ot and been told could be 12 more months before hes even seen and we been waiting 6 months already,

How do I find out about a keyworker i know whenb he ws seen by ed pyscologist intially is ib band D and does not qualify for family support worker .

soory for the moan but feel like im banging head on brick wall all seemed be told be glad he has no agressive traist while I feel for those that have this problem because hes such a aplacid chap(almost to much) he seems be over looked

[anxiousmax]

I know what you mean about being placid, ds2 was initially turned down for a request to assess for a statement because he wasn't disruptive enough, sod what he needs they were only worried about the teacher.

Do you have any sn parent groups locally as it varies so much from area to area it may be the best way to find out whats available locally & what your ds is missing out on.

Ours is held at our local childrens centre, it may be worth asking.

[Arabica]

I would have thought the best place to find out about keyworkers would be your child development centre (where paediatricians, SALT, OT etc are all based in my London borough). To get one in my area you need to be using 2 or more services at the child development centre, eg physio and SALT. Parent partnership, or something like it, should also be there. You could look under special needs on your local council's website, that's often a good place to start.