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Here are some suggested organisations that offer expert advice on SN.

before a diagnosis

(11 Posts)
charlie0424 Mon 17-Nov-14 22:13:30

I have a six year old son who is currently under going the diagnosis process for asd and adhd we are 4 months in from the first appointment and my sons behaviour is becoming unbareable. There just seems to be no help from any source without a diagnosis. He is becoming more angry (got suspended for biting a teaching assistant as she went to stop him falling over), is soiling himself several times on a daily basis and has been waking up a few times nightly after having bad dreams. I also have a 7 month old who is still waking at nights so i am constantly both emotionally and physically drained trying to keep myself together. Has anyone got any suggestions, advice etc .

2boysnamedR Mon 17-Nov-14 22:20:53

Have you got a home link worker at school?

Have you got a carer support group in your area?

Trying to think of organisations that can sign post you to practical support.

Also home start if you have a under five your eligible and can self refer.

charlie0424 Mon 17-Nov-14 22:29:41

I can ask about the home link worker as the school is the only place that are trying their best we have had SLT and a behaviour improvement team in and now looking at educational psychologist. I have talked to a group called young minds and they are arranging a call back to speak to one of their professionals. If im honest i referral to cahms would be the best solution but the paediatrician wont consider it.

2boysnamedR Mon 17-Nov-14 23:23:00

I only know about my sons school so not sure if all schools have home link workers.

They should be support for anything at home that effects school or any problems at school really. Eg divorce, fighting and bullying etc. it's someone to do your talking with school, advise and hopefully signposting you to some real practical help. Like parent partnership or local sn support groups. Like anything they could be good or useless but ours has been ok. My eldest saw ours once a week just for a chat.

My local sn group is also great. Makes me realise I'm not alone. Some people have a harder life than mine, some have it easier but we all share advice and I no longer feel so isolated.

Home start could also come for three hours every week when ds is at school and play with the baby while have a sleep or grab a shower

2boysnamedR Mon 17-Nov-14 23:31:59

I was told my ds could only see cahms once he was suicidal! Great to hear when he was almost killing himself by accident at least twice a week. Trying to jump out of a car while it's moving was "normal" behaviour. I'm sure that would've been a great comfort to us if he had the foresight to unclip his seatbelt first.

Also during that particular period I phoned his pead and she got him a emergency cancellation. A few times when we was at crisis point she phoned me up to talk.

Luckily it has calmed down since his diagnosis as I think I understand and can pre-empt things more.

charlie0424 Tue 18-Nov-14 07:20:04

Thanks i am willing to give anything a try at the moment our local camhs have said to the paed that we have to try every option before a referral can be made. The school my partner and myself have been working together to put stratigies in place like the ones used for sn children and on most occassions it works but that last few weeks has seen a downfall in his behaviour sleep etc. A diagnosis would open up so much more to us even if it was just adhd but its a long process.

OneInEight Tue 18-Nov-14 09:02:14

Don't hold out any great hopes for CAMHS as they were singularly useless for my ds's but going back to your original question these are things I wish I had done with the benefit of hindsight in that period whilst we were waiting for diagnosis.

1. Treat him as if he already has a diagnosis - do lots of reading about ASD and ADHD and start using the strategies recommended. They are unlikely to do any harm and more likely will benefit him.
2. Try and encourage school to do likewise. Set up meetings with class teacher and SENCO. Support should be put in place on need rather than diagnosis anyway.
3. A lot of the behaviour problems are due to anxiety. Treat as panic attacks rather than naughtiness and you may see better results.
4. Praise, Praise, Praise. His self-esteem is going to be hammered if he is constantly in trouble for things he can not help. 6 year olds generally want to be good. If he is not it may well be because he can't rather than he won't.
5. Do not punish at home for things happening at school. School is likely to be extremely stressful for him and home needs to be a calm, safe place for him.
6. Investigate fiddle toys and move n sit cushions. Give him something he can get rid of energy & stress on e.g. a trampoline. The school my neighbours's son (similar diagnosis) got him a spacehopper that he could have movement breaks on which really helped him.
7. Take two adults to appointments so you can take your son out of the room when you discuss behavioural issues. Your son does not need to hear again and again that he is badly behaved.
8. Keep posting on here for support and if possible find a local support group too. They will welcome you even if you have not got a diagnosis yet and give you valuable information about what help is available in your area. Things also seem better when you can talk to someone having similar problems.

charlie0424 Tue 18-Nov-14 11:49:16

Thank you oneineight.
At the moment we are working really hard with the school/senco to help manage his behaviours with stratagies used for children with an actual diagnosis. They also want to apply for a statement to have him moved to a more specialist school as he struggles in a class of 30 even with the 1 on 1 he gets.
I will have to look into panic attacks as when he has an "episode" we try and distract him from the situation.
We are always giving praise to him and sticker charts have been helpful but it really does depend on the mood he is in.
As for punishment of things at school we normally just talk to him on his level about why he shouldnt of done that.
The school have fiddle toys in his nuture class which is a small class of 8 he has in the morning but nothing when he goes back to his normal class of 30 so i will talk to the senco about this.
Appointments are always attended by me and my partner (his dad) but we may have to consider taking my mum so she can take harley out if the room if needs be.

Ineedmorepatience Tue 18-Nov-14 12:53:44

Great post one smile

charlie0424 Wed 19-Nov-14 07:08:29

Have any of you come across dealing with sleeping problems in children with adhd/asd? My son seems to keep waking up in the middle of the night (between 11/1) several times lately and sometimes even staying awake until 5/6 in the morning which isnt good because really he needs to go to school

youarewinning Wed 19-Nov-14 18:17:15

Have a chat with your GP about melatonin. It's the natural sleep hormone we all produce but for some reason children with certain disabilities including ASD and ADHD seem to lack this. They do prolonged release medication which lasts the night. It's not a miracle cure but has made such a difference to our lives.

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