advice needed for my 4yrs old son

[kwjd]

hi we are in the process of getting a diognosis very early! we are waiting on the hospital. We have had no really help (its not money that that we want) Our son has a speach therapist who goes to the school once a week. My son is not having a very good time he hates to go out its really hard to even take him to the local shops. So we never really take him out unless its really needed. He is almost 5 and is not toilet trained we go though so many nappies, he doesnt sleep well we are finding it very hard as a family to cope. What if anything are we entitled to? thanks

do we

[sky]

my son is 13 and was also diagnosed at 4 so trying to remember how the wheels started turning. the first thing to do would be to apply for dla and get a social worker sorted. we only see ours once a year but she could help you to get free nappies which you should be entitjed to -also to arrange some sort of respite care for your son.we only get 1 day a fortnight but you need some sort of break. hope this helps

[sky]

hi again -forgot to say if there is a sleep problem go to your gp and ask to be referred to a paediatrician who perhaps could prescribe melatonin for your son -made a world of difference to us!i sympathise -my son also wont tolerate shopping and at 13 is too big for meltdowns-and too risky for everyone else!

[Sally44]

Is your child in a special nursery?

Have you been referred to Early Years or Portage?

Is he being assessed towards a Statement so that all his special educational needs are met in school and he has the right school placement.

I'll also find an NHS autism exemplar which you can read.

There is loads he should be getting access to, but if no-one tells you and refers you on then he just won't get it.

[Sally44]

This is the link to the autism exemplar.

It is useful to see the process through the system and the time scales are worth mentioning to professionals so that they know you know how long this process should take.

 

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4090571.pdf

 

I would also recommend contacting your local authority and asking them for a contact name/number for the Early years Co-ordinator and also Portage (if they have this service). Phone them up and tell them your situation. If they need a professional to refer you to them ask who that is, and then make an appointment to see that person so that they can refer you on. If it would be the consultant you are already seeing, then write them a letter and ask for them to refer your child now, so that he is in the system and that saves you time.

 

He is 4, and should be starting school within the next year. They need to get a move on. You can also phone your GP and tell them that your child is autistic and is still in nappies and can ask them if you can get help with nappies because he still wears them 24/7.

 

Wearing nappies is also an issue with mainstream schools. Most will not take a child until they are out of nappies. But it sounds like your child may need a special placement anyway.

 

Once he is diagnosed you are entitled to a number of benefits, and you can spend the money entirely on your son. This would be disability living allowance, carers allowance, council tax benefit etc. So apply for these as soon as you can.

Edited January 31, 2011 by Sally44

[kwjd]

thankyou for the help my son is in main stream school he is in reception but he still spends all his time in the nursery where he is finding it alot better. His teacter the is Senco and has been trying to get things moving. He wear pull ups at school and nappies at home i have to change him every hr. We are waiting from the hospital for his assessment appointment. Things are moving so slow this has been going on since he was 2 1/2, and things are only moving along now.

[justine1]

thankyou for the help my son is in main stream school he is in reception but he still spends all his time in the nursery where he is finding it alot better. His teacter the is Senco and has been trying to get things moving. He wear pull ups at school and nappies at home i have to change him every hr. We are waiting from the hospital for his assessment appointment. Things are moving so slow this has been going on since he was 2 1/2, and things are only moving along now.

Hi

 

With the potty training, have you tried him in underpants instead of nappies and pull ups? you could take him shopping and get him to chose his own underpants and use reward charts(with stickers of a fav charactor)for every successful wee. Also Sam did not use the potty at all he just went straight to a toilet at age 2,so maybe try the main toilet with training seat.Get him to take in a fav soft toy or something as he may be afraid of being in the toilet.

If you changing him every hour you can instead put him on the toilet every hour or even every 30min depending on your situation.

 

Good luck x

[kwjd]

Hi, the toilet training is a real problem he has his own pants dr who,waybaloo, pepper pig you name it. I take him to the toilet alot and he just refuses to go thats with the toilet and the potty he just wont use them. I can stand there giving encourgment or stand away depending on his mood. He goes on average 2 in 10 and thats a good day, and he has also found his bits and plays with them alot. So he takes his nappy of all together and pees on the floor.

[Sally44]

Use the Autism Exemplar to mention the timescales in that. If he is mainstream he is going to need considerable support. You can also phone the local authority and ask for the contact details of the autism outreach teacher. The Autism Outreach Teacher only goes into mainstream schools to give advice to those schools. If you get her involved she would be able to write a detailed report towards your request for an assessment towards a Statement - if you felt you wanted to do that.

 

The Speech Therapist and the educational psychologist are the ones that decide if they think he will cope in a mainstream school. If you seek an assessment towards a Statement they should identify ALL his difficulties in reports and quantify and specify provision to be included in his Statement of how those needs will be met in school.

 

At this stage you are STILL waiting for a diagnosis. To get the support he needs and the right school placlement (especially if he needs an autism unit or a special school - he will need a Statement that says that is the kind of placement he needs).

 

You can go and visit any other local authority school that you think maybe appropriate. Go and see the special schools that have children with an ASD diagnosis in them. Also visit mainstream primary schools that have autism units.

 

Your son's age is not very early. There are many children diagnosed at a younger age.

 

If you visit a special school or an autism unit that you think has similar children to yours, or which you think has the educational environment and specialist teachers that your son will need, then you can write to the local authority and request an assessment towards a Statement. You do not need the school/nursery or the EP to agree with you. You can request it. The local authority will ask for reports from the nursery/school, the speech therapist and the educational psychologist (and the autism outreach teacher if you get them involved now). And the local authority will decide whether to issue a Statement or not.

 

Are you expecting a diagnosis at your next appointment with the paediatrician? If you don't know then write to them and say that you are going to ask the local authority to assess for a Statement and so you need to know the diagnosis. (Typically getting a diagnosis can take 12-18 months). Having a diagnosis will help.

 

If the local authority refuse a Statement then you appeal that decision (you will be told how to do that at the time). Most local authorities refuse a request for a Statement on the first occasion. So it is always worth appealing.

Edited February 1, 2011 by Sally44

[Sally44]

If he remains without a Statement the school he is in will have to try to meet all his needs thorough their delegated funding. From the stage of development you say he is at - ie. still in nappies and playing with it - do you feel that he is going to cope in a noisy, boisterous mainstream primary class. You say he has been kept in the nursery, surely that is an indication that school feel he would not cope in the mainstream class?

 

I think that visiting other mainstream primary schools with autism units, and also local authority special schools, will give you a much better idea of what kind of placements are available.

 

One thing to put on file for future reference. If the local authority do agree to assess him towards a Statement, write to all the professionals involved and ask that they carry out standardised assessments. These will give baseline recordings related to age level or percentile results from which you can measure your childs progress. If they don't do these assessments (and do observations and classroom based assessments only) you will find it much harder to prove that he is not making progress in school. And you need to be able to prove that progress is not happening to get any further input or specialist help.

 

The Statement is a legal document. What it contains is what your child will receive. So it is very important that everyones input is detailed in terms of the need they are addressing and the amount of time they will devote to it. Eg. 12 hours per term on speech and language therapy broken down into 6 hours 1:1 direct therapy and 6 hours for admin, note taking, observations and assessments, training of school staff and home, liaising with home, attending IEPs, writing an up to date report for the annual review. If the Statement does not say these things then it will not happen.