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?

Can you print some picture cards and have them up somewhere

there’s loads available on line and you usually do a Now - we eat dinner Next we brush our teeth - after that it’s bed time

@GoldilockMom We have tried PECS but he's not picked it up well. He has very limited understanding

What school doing? Do they use symbols? Timer? Now and next? Could u do these at home? Do you use makaton signing to communicate? Pecs?
Have you been to Dr about the sleep? Melatonin?

A strict routine and expectations in place- it's hard work though.

@Bronzeisthecolour School are continuing to try with PECS too but still working on it with him and it's taking time. We are currently waiting for funding for a volunteer who will be his 1:1 but in the meantime he is under SENCO

@Bronzeisthecolour I've not asked for melatonin. I'm reluctant to give him medicine for sleep as he's still so little. I want to try other things before that but not sure what?

Have you been referred to OT or SALT? If not, ask your HV to refer or see if you can self refer.
OT could be really helpful if he's experiencing sensory issues etc - really helped us understand how our DS' 'behaviours' like jumping or climbing and how to give him opportunities for the sensory feedback he needed.

It's really hard OP - sending you a big hug. The summer my DS was 3 i thought I was going to lose my mind as everything was so so difficult, but things did improve and now day to day life is generally a lot easier than it was. X

Have you applied for DLA? You don’t need a diagnosis for this.

Does DS have an EHCP? Has he had SALT and OT assessments and does he have ongoing therapy?

Have you had an OT assessment at home looking at how you can make the home safer? A SafeSpace bed might help with keeping DS safe at night. Does he take melatonin?

You can ask for social care assessments - a carer’s assessment for you and an assessment via the disabled children’s team for DS. Sadly you are likely to have to fight for support but it’s worth it. Home Start might be able to support you too.

Hi On.my 12 year has severe autism and learning disabilities,he was diagnosed at three and a half ,he's still non verbal ,he communicates via PECS ,and picture boards but it took years for him to grasp he's in a special school for children with severe and profound learning disabilities,
have you applied for DLA?
My advice is to.find your people ,I have a gtoup.of friends who.all have children with complex disabilities, they have and continue to.be great support to me just by listening and understanding ,are there disability groups eff in your area?

No EHCP yet but we will be getting the ball rolling with this for when he starts school full time in September. He has SALT but this is on a monthly basis at school. Should this be more frequent? I just feel so lost with everything and have no idea. He is my first and only child so I have no experience

I've applied for DLA, been waiting 8 weeks so far. Not feeling hopeful but I did send it lots and lots of evidence to support

Melatonin is not a sleeping medication it's a hormone that is produced naturally ,and can aid restful sleep ,it doesn't work for everyone but it can work wonders for some children.

@x2boys ah thanks. We are under paediatrician, is it him i would ask for this?

You can apply for an EHCP. Waiting until September means you'll be waiting for it this time next year.

It will get easier. I promise.

Also you can self refer to social services to get some respite help. You need to ask for a carers assessment.

You will be fine ,my sons been getting DLA,since he was three,if you are on the various Facebook groups for DLA,take what people say with a pinch of salt ,if you have the relevant evidence you will be awarded .

@PastMyBestBeforeDate I'll mention to school again about the EHCP. It's all so difficult because I have no idea what I should/shouldn't be asking for and what is the norm

Yes I think they can ask the GP,to continue it as a repeat prescription but it has to intiated by the paediatrician

@x2boys I've got my fingers crossed. I'll be gutted if he isn't awarded I don't think I have it in me to fight but I know I need to

I am a Speech Pathologist (Australian) and for his age and needs ideally therapy weekly or fortnightly - Max gap with you there to help implement the strategies at home. Have you tried simple sign to support Him and basic visuals t9 build understanding.
It is a really tough gig being the parent to a child with complex needs ❤️

You can make a parental request for an application for an EHC needs assessment. I wouldn't wait until September as it is not a quick process. Application for an EHCP is granted based on need, not diagnosis so there is no need to wait for your Autism assessment to get the ball rolling.

I'd start the EHCP process right now. Placements are being made now for children with EHCPs to start in September. If you want a Special School placement you definitely need to be in the system today. You can apply yourself if his pre-school don't look like they will expedite it.

I also agree with PP that a safe-space bed might be a good thing, then at least you know he isn't going to hurt himself after bed time and you can sleep.

Step 1 is getting them to assess so you can do that. Technically the only thing you need to show is that he has, or may have SEN.

contact your local authority about an EHC needs assessment now. You really don’t want to waste any time because it can take a long time, especially if you need to appeal for the right school.

My son has autism and ADHD. He takes melatonin an hour before bedtime to help him slow down and feel a bit sleepy. He also has a weighted blanket. I would recommend both without hesitation.