tough few days cant stop crying tonight

Hi again - you are doing brilliantly.  You are being let down by services which should be helping you.  You need to keep on at them, even going to your MP if necessary.  I know the last thing you need is any more to do but you have to keep pushing.  A number of years ago I got very disheartened + tried + temporarily gave up on pursuing something for my son.  In the end I got there, basically because I wouldn't leave the authorities in peace, including writing letters telling them I'd take things further.  I know how it feels to be so tired day in day out.  That's why they need to get their finger out with his diagnosis because that's the key to getting things put in place which will help the both of you.  You know you need some rest + relaxation in your life but haven't any way of getting it as things stand.  Your life needs some balance back in it.  Is there a befriending service in your area?  If there is I'd check it out to see if it could be suitable.  I hope things get moving with the diagnosis soon.  You are a brilliant mum, but everyone needs enough support + a break from the usual. 

hi thanks for your reply. we get the people working with him saying 'off the record' as apparently they cant say he has autism or whatever it has to be this one doctor and i suppose its their way of covering themselves in case it isnt i dont know but it is VERY annoying.

Funny thing is i have taken the initiative to help him

1/ im here on this page

2/ headphones / ear defenders

3/ made his bright colourful room one colour he chose

4/ took him away from a dangerous situation ie school and home ed him which isnt easy and believe it or not i dont get ANY time to myself

5/i buy him hooded clothes as he feels happier with hoods up

6/ i put vast amounts of fabric conditioner on clothes and cut labels out to make them 'feel right'

7/ ive seen the gp, school when he was there, asked his peanut allergist, epilepsy peadiatrician, hes also got a social worker to help him get into groups to socialise which the school set up when he was there and its a waste of time as she dosnt come up with ideas he would rather stay in

8/ ds when we go out

9/ i take sensory play toys i bought him out with us

10/ tried sunglasses but he dont like the feel of them

11/ bought him a thick rug indoors as he likes rubbing hands and face on it, bought lots of other sensory things he likes

12/ joined home ed groups, take him to his fave place 3 times a week (library)

13/ bought EVERY toothpaste on the market to get one he would use

14/ made him his own 'space' in the garden, with a teepee and all hiw bird houses etc he likes and sooth him

15/ Been on twinkl printing off different visual cards

the list goes on, i appreciate its hard for him but me, I'm human too! I do try so hard to help him somedays are worse than others. All i think about is my son, are their peanuts anywhere when we go out? (he only has to touch where ones been) have i got his adrenalin with me? hes holding his head is he about to have a fit (as he wont tell me if hes unwell). Will it be busy out? where can i park in case he has a meltdown? etc

The anaphylaxis to nuts and epilepsy add stress to the autism for himself and i.

It must be the areas we live in that determin if health professionals are useful or not. psch ed suggested trying smaller shops first then get bigger gradually...I've been trying this, and trying to look for signs to try telling if hes had enough.

i care from him from the moment the sun rises (he has a blackout blind but seems to just know when its up) until 7pm then i do my lesson plans then sleep, get up and do it all again.

Today is a new day, we have an easy lesson day planned in his teepee. Im hoping it will all go better than yesterday :)

Hi - things must be so difficult for the both of you.  This thing with getting a diagnosis sounds odd to me.  What's this "off the record" phrase??  Why off the record?  I always thought that once you were on the diagnostic pathway then you would either get a diagnosis of autism or not.  I would check out info via the nas site + also the ipsea site if you have enough time.  I know how difficult it can be to keep pressing on when things are so difficult.  Unfortunately, from my experience, you do have to keep on at the various organisations to get where you need to be.  

Please note stranger's advice.  It is relevant.

Schooling - are you still home educating your son?  How's it going.  A number of parents here home educate so it's worth checking out their posts + how they came to the conclusion that was the best thing to do.

When my son was little I was a single parent.  I didn't know many people in my neighbourhood + didn't have family locally.  I do understand how difficult it can be.  

You don't have to wait for a diagnosis to implement coping stragegies.  Just do it.  Check things out via the home pg + the posts.  You can take the initiative + make a difference to your child's life + your own.  It sounds like he's under a load of stress + that's why he's doing some of the things you mention.  Think about how autism affects him as an individual with his own personality.  Does he has sensory problems? Do some things cause problems such as: certain noises, tastes, textures, smells etc.  Is he easily overwhelmed when you go out?   Fear of the unknown, crowds, etc. What affects him?  Has he a regular routine day in-day out?  A timetable he can look at, whether pictoral or verbal which he understands so it settles him down?   Just a few thoughts which may help him + so will help you.

We all understand on here + are sympathetic because we've been there ourselves.  Sometimes we return "there" every so often, sometimes for longer than we'd expect.  We'll always try to be of help + at times look for help from others.  You'll feel a bit better when you've regained control over your daily life with your little one.  He'll feel better too.

thank you for your reply, I couldnt get to see his epilepsy consultant as he was off for two weeks and the nurse wouldnt give any other advise than talk to the consultant! the secretary said i couldnt see any other consultant as epilepsy complex. gp i couldnt get into so i ended up at the pharmacy as i needed help for him and no idea what to do. he trashed the pharmacy but they were brilliant and said it was the meds and asked me if he was autistic too! they called gps and got me in later in the eve which was better than nothing, i insisted he came off them but you have to do it gradually so was a long processwhich took 6 weeks. hes just finished them about a week ago.

Ive chilled looking at the stars this evening and decided tomorrow is a new day. we will decide what he likes doing lesson wise and ways to reward him for good behaviour. thank you for the tips, its so nice talking to someone with asd and getting his perspective

Whatever you do, you need to be consistent. So, if you punish him for doing something and he does it again, you need to punish him and not just ignore it.

If his medication for his epilepsy make him violent, have you asked for a review and a possible change?

Two approaches you can try:

1. Bribery. We, on the spectrum, are often reward motivated, so if you want us to do or stop doing something it's better to reward for 'good' behaviour, rather than punishing us for 'bad' behaviour (in fact, punishment can often make matters worse).

2. Reducing and removing stress factors. Your son's behaviour is almost certainly a stress response to some environmental and/or sensory factors. Try to discern what these factors are and remove them from his environment.