I don’t know about anyone else. But I feel like I’m constantly banging my head against a brick wall. I just personally feel like theres not much help for parents out there and thought I’d write on here to see if there are places that do have helpful resources or places to speak to someone for help and advice.
My son is nearly three and been on the autism waiting list for a year. Therefore we have another year and a half to go and he will more than likely be at primary school before we get a diagnosis. My main goal since being on the waiting list has been to get him all the help and support he needs ready for primary school. Or to know to find a SEN school and not to attempt mainstream. However, that seems easier said than done. I got him started at a nursery which is very expensive and they had someone external come and assess and refer for complex needs etc. But since then I’ve had no support as a parent (he’s happy there!) and I want feedback and good communication from them to know what to implement at home and help him learn and understand. I’ve been told about PEX cards? And that would help. I have applied for DLA and awaiting to hear back from that any day now. He’s on the waiting list for SLT, complex needs, paediatrician and autism.
I have contacted national autism society and got told to contact my local branch. I emailed my local branch and heard nothing. And whenever I try and get some support and help I just seem to get passed from pillar to post, and I’m reluctant to stop trying and wait until preschool and school for help in areas as I want the best for him.
The things I am looking for advice for are to do with his chewing, he has improved alot, he was relentless last year and I have holes in my carpets, and would chew EVERYTHING! Now it’s calmed down a lot. But he wants toilet paper, and loves moss, and chew toys don’t seem to work. Wet cloths he’s currently through a phase of chewing. His nappies after nursery are horrendous due to all the things he shouldn’t be digesting. Any advice on help with chewing? Or why they do it? Things they can chew safely that aren’t rubber chew toys?
He’s not noise sensitive, but very sensitive with his ears. He doesn’t like them being touched, he gets really bad build up of wax and I can’t even attempt to wipe them to clean them. Any advice or tips with this?
PEX cards? Where’s the best place to get them? I’ve made him a picture bock with different things in. But he just likes to chew it rather than use to communicate 
. I just get dragged around by my hand to everything. I see lots on Amazon etc but I don’t think he won’t understand them. Didn’t know if there is anywhere I can get help or advise with that or things to help him communicate?
Sleep. He struggles to wind down. And isn’t going sleep until later than usual now and been waking a lot at night for a few hours at a time. He went through 4 months of sleeping all night. But he’s always got up at night. He’s just up and ready to go as soon as he opens his eyes. Is there anything I can try that’s more calming and distracting in his room to help him wind down? I’ve tried many things, he likes to throw and turn up toy boxes and unplug things and throw night lights etc….
lastly, with DLA and support for schools etc, if he’s granted DLA am I then told the different things I can apply for? Or is it left for me to find it all out again. I’ve heard you can get grants and help with resources and things for home. But I don’t know how I do this or what things to apply for etc.
apologises for the very long post. Part of me thinks I should leave it and just cruise along until school. But the other half of me wants to push for as much help and resources as I can, as my main goal is just for him to be happy and be able to communicate and have things that help him and to just understand him a bit more. So with that, any courses anyone can suggest?
I’m just surprised there isn’t somewhere you can go and ask questions and get answers. It just seems like a maze to get any kind of support or even someone to speak to. Doctors, health visitors etc they don’t seem to know.
