Please Help!

[JadeHodder]

Hi People,

 

This is my first time writing on this site but me and my family desperatly need some assistance.

Basically my Mum isnt really good with computers and I offered to come online to see if we could get any help!

I am 20 years old, my brother is now 11! My mum has suspected he has Autism/Asperges since he was around 3years old but it has just been so difficult to try and get some help!

He has just recently been passed to a Dr. Singh (i think thats his name) who has told kai he thinks he has autism but needs to do a proper dianosis for him as my family is starting to find it difficult to cope!

 

We all love my brother very much, and do our best to help him, but now he has just started high school he is finding it extreamly difficult to cope with the amount of work and as he has not formally been diagnosed his teachers arent exactly doing much to help except tell him he is stupid which we are certain he is not!!

Anyway, Kai (my brother) is started to get very angry, with himself and the rest of the family!

 

Until he has been diagnosed and finnaly gets the help he needs and so greatly deserves! We are just asking for any help and advice anybody can offer for ways to deal with this kind of stress, not just for Kai but also for my mum, she feels so bad for my brother that she cant give him the help he needs, but how can she when she doesnt know what is going through his mind or even how to help him get some of his thoughts out of his mind. He doesnt even know how to get his thoughts out of his mind! We really think he would benefit from meeting people with asperges/asd but we dont know anywhere to meet people to talk about our concerns. We are genuinely worried now, he is really beginning to have bad thoughts about himself that nobody his age should be thinking!

So, I am sorry to ramble on... im sure most of this doesnt even make sense.

 

Thank you, and I hope someone, somewhere has some advice to help us get through this tough time!

Please Help

 

Jade xx

[tom'smom]

Hi Jade,

 

I'm no expert but I am mum to Tom (10) who was diagnosed with High Functioning Autism 2 years ago and I can sympathise with your family's problem. Unfortunately until you do have a formal diagnosis many schools will be reluctant to give you any extra help, even though they are supposed to; they think they can bamboozle you into thinking you have to have a Statement of SPecial Educational Needs, which actually you don't (although it can help). And although there is a lot of help out there, finding it can be a nightmare.

 

What I can suggest is this (I don't know where you live so can't be more specific):

 

1. Use the NAS website (www.autism.org.uk) to find out more information about the condition and also to find your local NAS support group. They will be the best source of help to you because they will know the local schools, local groups that are available to help your brother etc. They will happily talk to you without you having a formal diagnosis. Most local groups have family advisers who will come out and talk to you, and also a huge amount of resources, books etc that you can use.

 

2. Get hold of your local education authority (county council education department) and ask them to give you the number for Parent Partnership in your area. These are trained semi-voluntary people who work on a family's behalf to ensure the school is doing all it can to support the person with difficulties. You do not need any form of diagnosis to access this service, its free, and it is a great help when it comes to dealing with schools. They can come with you to school meetings etc and help with paperwork. I've found the school has completely changed its attitude since PP came along with me, they no longer treat me like a paranoid mother!

 

3. If there is a local NAS group, go along to it and chat to other parents, siblings etc. You will get invaluable local insight here, as they will all have been through the same thing, although obviously autism being a spectrum disorder their children/siblings may well be very different to Kai. You don't have to go every week or commit to doing anything to help, but it is often a first step to feeling that you are not alone and are supported. Many areas also have activities organised for young people with autism or similar conditions; these parents will probably know what's available. THey are also a great help when it comes to filling in forms etc, of which there will be many!

 

4. Go to your local library and ask them to help you locate any books that explain autism and ask them if they know of any local groups - libraries often have lists of groups and activities that go on in their district. You may find that many of the books are very scientific and hard to read; just chuck these and keep going, there are lots of really helpful books out there. Tony Attwood's are the best, and one I've found especially useful is How to Help Your Autistic Spectrum Child: Practical Ways to Make Family Life Run More Smoothly by Jackie Brealy. Disregard anything American or anything that promises a special diet can cure autism. It can't.

 

5. If and when you do get a diagnosis, register your whole family with the Autism Research Centre (http://www.autismresearchcentre.com/) as by doing so you can help scientists discover more about autism, how it develops and potentially how to treat it.

 

6. See if there is a Family Carers or Young Carers organisation locally. If your brother is diagnosed with autism, or similar condition, they can provide help and support for you and your family. In our area, for example, my daughter who is 12 registered with Young Carers because she often has to help look after her brother and their relationship can be quite fractious so she needs some extra support. They have been into see her in school and arranged counselling if she needs it, plus they arrange days out, have a monthly club where other young carers can meet up etc. This is not autism-specific, many of the young carers have family members with cancer or mental health issues etc, but they are all quite supportive of each other and understanding of frustrations etc.

 

I hope this helps somewhat; good luck with the diagnosis.

 

Helen

[cmuir]

Hi

 

I found that pester power can help. In other words, keep badgeringyour GP to get a referral. Once you get a referral, if for example the appointment is months away phone and ask for a cancellation appointment. Although that can speed things up, it can still be a long process. Generally, a team of specialists can be involved in assessing a child, e.g. SALT, OT, Paed, etc. I kept a diary and recording odd behaviours, for example, at Christmas, R wouldn't entertain wrapped up presents, he'd stack them up behind the dining room table (he'd happily open presents that weren't wrapped!), lining up things, insistence on routine, inability to cope at social gatherings, etc. Also, reports from school, etc can all help. All of these things can help. In the meantime, it may be worth speaking to your GP again and tell him about the thoughts that your brother has been having, and also outlining how the whole family are affected. With regards to school, even in the absence of a diagnosis, support should still be put in place – in reality though, a diagnosis can help a great deal. Your parents can ask the school for an Educational Psychologist to see him, but there may be a reluctance if he's calm and progressing in school. Pester power!

 

Best wishes.

 

Caroline

[KezT]

Ask for a formal meting with the scool, explin your concerns and that Kai is undergoing tests/dx. ask for an IEP to be writtem. follow the whole thing up by "cnfirming" wha was iscussed/agreed in writing.

 

the school has a duty to support with or without a dx. if they can't, they should be pursuing additional assistance!

 

you can also request an ed pysch report.

 

but at the end of the day if the school is totaly unsupportive - I would suggest looking around for a better one. we moved DS at the end of year 1(pre dx), which was extemely traumatic for everyone, but soooooooooooo the right thing to do forhim in the long run:) it's better to get the school on board at this stage than to fight them for the next 5 or 6 years and watch Kai get more unhappy, then try to change school later in his education.

[Kathryn]

Hi Jade,

 

Welcome to the forum - and to your mum as well if she's reading this.

 

Not much to add to the great advice already given. If your mum prefers to talk to someone on the phone about your brother's problems at school, give her the numbers of the helplines on the link below. An adviser can then talk her through what she needs to do next, how to approach the school, etc.

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/20381-special-educational-needs-advice/

 

You might also want to print this sheet out and give it to your mum. It has some good advice about what to do if the school aren't taking your concerns seriously. Although the scenario is slightly different, the steps are the same and you can adapt it to your brother's situation.

 

http://www.ipsea.org.uk/AssetLibrary/How%20we%20can%20help/Taking%20Action/Case03.pdf

 

I hope that helps but do keep asking questions here as there are many people on this forum who have experienced similar situations.

 

K x

Edited October 8, 2011 by Kathryn

[Sally44]

The only additonal thing I would mention [as he is in the process of being diagnosed], is to ask IF school have referred him to the Educational Psychologist and the Speech and Language Therapist?

 

Is he on School Action Plus? If so he should have been seen by those professionals and the school should have an IEP (individual education plan). Parent Partnership can go with parents to school for these IEP meetings.

 

In the meantime, the school/or you, can contact the Local Authorities Autism Outreach Teacher. She should be able to come to the school [if school are okay with that] and can give advice to school and home.

 

You can also ask the Local Authority to assess your son for a Statement of special educational needs. That would involve all professionals having to write an up to date report on the child. You can write to each professional (EP and SALT) and ask that they carry out standardised assessments [these are very specific assessments which will demonstrate what his baseline abilities are in terms of age or percentiles in all areas of functioning - that will prove whether he does have a general learning difficulty, or whether he has things he is good at, and things he struggles with typical of an ASD].

 

Although "observations" are useful, standardised assessments are really the only way to get a baseline measurement of where he is at now, and what his areas of main need are. From those results any progress can be measured. If progress is not being made, that is also your evidence that he needs more input/therapy or even a different type of school.

 

It is important to know the cognitive ability of the child, along with all the difficulties they have. Ideally wait for a diagnosis BEFORE you ask the LA to assess for a Statement.

 

At your next meeting with the Paediatrician, or whoever is assessing him for a diagnosis, and ask them WHEN they think they will be sure if he is ASD or not.

 

So far he has managed to get to mainstream secondary school. That means he must have some potential to have got that far. What is his academic level? To be coping in a mainstream class without support he should be on at least level 3 for literacy and numeracy?

 

If he begins to be unable to go to school due to anxiety etc, then you may need to ask for the assessment towards a Statement sooner.

 

Sorry to hear things are not going well at the moment. As he is verbal, as well as reading books, I would also ask him "how" he feels, or what it is that bothers him. He may be able to give you some information/insight himself.

Edited October 9, 2011 by Sally44

[trekster]

Theres a good book that could help your brother aimed at ASD older children and above.

'How to be yourself in a world thats different'.

 

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/diagnosis-what-to-expect.aspx

 

http://www.autism.org.uk/Working-with/Education.aspx

 

http://www.autism.org.uk/en-gb/get-involved/campaign-for-change/our-campaigns/make-school-make-sense.aspx

Edited October 25, 2011 by trekster