Struggling with my suspected ASD child

[gkkp]

Every day is a constant battle. I feel depressed with life at the minute and it's wearing me down because I have no idea how to handle my DS. I feel like a terrible mum for even writing this.

He's almost 4, pretty much non verbal, still in nappies and can't communicate his needs. This leads to extreme frustration and intense meltdowns on his part. I'm constantly asking and guessing what he wants. His behaviour is extremely repetitive, ie. he'll watch the same things over and over again, he's obsessed with opening and closing doors etc. He's obsessed with food, if I say no he goes into crisis and I can't calm him down. Usually I end up giving in after a while because I can't cope with it. His sleep isn't great either. Lots of late nights because he refuses to wind down, he's hyper, he won't get into bed so I don't even get time to myself in the evening. He has no sense of danger, I have to constantly watch him and stop him because he would seriously injure himself. This is only some of the things he does btw, there's so much more on a daily basis.

I'm drained, I don't know how to deal with this. I work FT also but cannot reduce my hours/stop work to look after him. We are waiting for a diagnosis but this is taking months. What am I supposed to do in the meantime?

@Sublimeursula Both of my parents help whilst I'm at work thankfully

Don’t wait to apply for an EHCNA, apply now. On their website IPSEA have a model letter you can use. They are based on needs, not diagnosis so you don’t need to wait for that. SALT and OT can then be part of an EHCP, weekly if needed.

If DLA is refused ask for a mandatory reconsideration and then appeal if necessary.

Look up "objects of reference" which is a way of communicating with children who do not understand pictures.

You don’t need a diagnosis for DLA or an EHCP. They are based on needs, not diagnosis. You need evidence but it sounds like you have it/can get it from the support DS is currently receiving e.g. the SALT, nursery, paed.

I know you say you cant, reduce e your.hours and obviously I don't know what.your.finances are like ,but is it worth looking into.what you would receive if you were.a full time carer?
Once your son is awarded DLA, you would be eligible for universal credit,carers allowance etc, if you gave up.work ,everybody,s situation is different of course ,but it would take some stress off.

@Sublimeursula He doesn't display as many of the challenging behaviours when he is with them but they recognise that he does show a lot of ASD traits

@x2boys I could look on one of the benefits calculators, however I do have a partner who works so we have that income coming in too, would that affect how much I could get?

i work in a preschool with a child who sounds similar to yours and we have just sent in an application for an EHCP so I’m disappointed that yours is batting it away. Definitely apply now, the sooner the better. That is huge pressure on you but at least you have the relative respite of work, staying home means there’s no break at all as is the case for many parents / carers

Our daughter's been on melatonin since age 7. She's 10 now. It's really helped her. It doesn't work for everyone but it's definitely worth a try.

Yes and it depends how much.he earns, it might be worth looking into I gave up.work when my son was diagnosed and my dh,still works , with cares allowance and tax credits ,plus DLA, we get.by .

Your partner’s income would be taken into account for UC but when you have a disabled child the maximum amount (it’s a different amount depending on individual circumstances e.g. age, age of DC, how many DC, rent…) a family can earn before they are no longer eligible is higher than many realise.

DP’s income isn’t taken into account for carer’s allowance.

So I would say first steps

• speak to school senco- do you have a pecs book at home?

-Start EHCP now.

• Start simple makaton signs- yes, no, more

--(google) ask local schools- especially any SEND- just email them- about parent support groups, even if you can't attend they often have an online presence and weekend meet ups. This can really help!

• paediatrician appointment about melatonin, at least get all info and options. I would try it as more sleep fir you both can really help.
• look at weighted blankets,safe sleeping space, trampette, space hopper, chewy toys, fidget toys etc and see what would work for him. Even ear defenders may help in noisy spaces.

Hope this helps a bit- feel free to ask questions.

Apply for an ehcp now. He will need one for the option of special school or guaranteed 1:1 support.
Look for local parent support groups and there are online groups. These can be an excellent source of information and support.
The information schools and your local education authority (LA) give you regarding what they have to provide or should be doing to help your child is sometimes not correct ( frequently because they don't know what the law is) and I would never rely on them to do what is required. Other parents are often helpful in this situation.

You’ll be awarded DLA I suspect you’ll find on the basis of the sleep issues, my son has far fewer challenges and we were awarded mid level with no issues.

If the wait time for assessment is horrendous, the right to choose pathway is very straightforward. My GP happily referred us to a private clinic nearby via this pathway that accepts referrals and now he’ll be assessed within six months. Otherwise we were facing a year wait just for his referral from the paediatrician to be processed and submitted to CAMHS.

Definitely get the EHCP ball rolling now, the sooner he has support in place the better he’ll be. Everything has a waiting list and the sooner you are on them all the better.

It’s really hard sometimes, I know. No idea how you are working full time and managing, I work three days with significant family support and a DH who 100% pulls his weight and I still find it overwhelming and really hard filling all the forms in, chasing things up, sending emails etc.

Yep I agree with all.of this .

Barely coping if I'm honest. Finding it so difficult dealing with DS and everything that comes with him and working in a demanding, full time job as well. I'm not sure how much longer I can keep it all up. My mental health is shot, I genuinely feel like a shadow of how I used to be. Praying things improve in the future

@Sublimeursula I sent lots. Various paediatrician reports, SALT reports, school reports etc