undiagnosed delay help

[Phoenix4725]

hi i have a 3 year old with no speech and basic understanding at all ,his only communication is by pointing and showing we see salt but only hour every 6 weeks any idears please tried makaton but he not following plus hypermoblity means cant co rodinate enough do signs.
He has general delay as well as sever hypermoblity currently gets 1 hr of pysio every other month and are on list to see ot but no idea when .
been told needs angled cultery and i also need help with moblity as he struggles with walking but getting to big for strollers(last one buckled wheels0, but been told wait for ot then be refered to wheelchair equipment but we been waiting for 8 months and no end in site so does anyone know where can buy these .

he has been awared a one-1 for some of time at preschool come september and is classed a s band D but no statement plnas yet but he due start school sep 2009 anyone had any experiance on getting there child held back a year he will barley be 4 before hes ment to go
soory for long post but no idea where to go or what to do thank you

where on earth do you live? The support sounds terrible. Have you had any tests done and an mri etc?

Has the physio given you a program to do at home? and also has the salt done the same?

Makaton is a very good starting point and have you seen the something special dvds? these would most probably be helpful

As for the wheelchair, ring up whoever reffered you and ask where your appointment is. Then just pester pester until you get an appointment. They are called maclaren major buggys and you can sometimes get them on ebay but your wheelchair service should provide you with one

Does your boy see a paediatrician or educational psychologist at all, as their input would be useful about schooling. I would be wary of trying to hold him back a year, as in England, LEAs tend to make you start kids directly in year 1, rather than reception, so he wouldn't get a year to catch up before starting school. You would have to check with LEA whether they would let him go into reception at 5. You might also want to think about and discuss with the professionals whether you are determined for him to go into mainstream, or whether a unit attached to mainstream or a special school might be better for him.

I agree re:wheelchair. As Ryobi says, it's possible to get maclaren majors on ebay but after 8 months they should be sorting this out! mountain buggies are also useful for older kids - there is a recent thread on this board about them.

useful organisations:-

www.ipsea.org.uk (lots and lots of advice and model letters on statementing, they also have a (very busy!) phone helpline.

Parent Partnership (each LEA has one, they advise about rights etc to parents with kids with SEN). not fully independent though.

regarding communication - don't know if you already do this, but it can be useful to show photos to your kid to help them know what's about to happen/who they are about to see etc.

in general; you might want to discuss PECs (picture exchange system) with your SALT. More info about PECs here

www.pecs.org.uk/general/what.htm

You need someone on your side to help sort all this out. Do you have a keyworker (usually one of the health professionals involved with your child, or could be a social worker). If not, there should be someone at the child development centre (usually where the developmental paediatrician/OT/physio/SALT looking after your child is based) who's supposed to be helping out parents, giving advice, etc. My DD has global developmental delay and we get quite a lot of supportyou should too! Portage are very helpfuldon't know if they work with 3 year-olds but it's worth asking.

Phoenix - re pre-school, he probably wouldn't get portage as well, but nursery should be gearing up additional help for him in any case - usually best to get kids with delays into the education system as early as possible - has he been assessed by Area SENCo/IncO as well? These guys are really useful to gee up everyone else. Have pre-school seen SLT, physio, OT etc for target setting for his IEP? They will need guidance on how to maximise his fine motor from an OT, working towards school. I'm guessing he is at School Action Plus... Have you seen his IEP? It should be reviewed termly or a minimum of six-monthly with your input. we were at School Action Plus getting all the support needed and statemented for school - so hopefully the paperwork for statement can be sorted in the next school year - they won't bother now until septemebr as they'll all have their knickers in a twist sorting out this year's intake.
slightly staggered by how little support you are getting - contact your paed and ask for a multi-disciplinary meeting (or 'team around the child' meeting) to get everyone in line and referrals done and chased (inc WCS). You can ask the SENCo to chase OT as well. Does he need spec seating to maximise his fine motor? They should assess for that too.

Re the school issue, my ds did mornings only for the whole of reception (he is one of the youngest in the school year) but I really wouldn't recommend it. When it came to doing full days he really wasn't keen and we had the whole lunch time issue then as well. In hindsight I really wish I'd made sure he was in full-time education from the start. When he did start full-time he only lasted a term before it all went pear-shaped and we had to move him to special school...where we all lived happily ever after!

My ds uses PECs and even though he has a fair bit of speech now they are still a great support. They really ease the frustration of trying to communicate.

Hope you get some good tips from Mumsnet!