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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Struggling with my suspected ASD child

73 replies

gkkp · 29/01/2023 14:20

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?

OP posts:

Original poster

gkkp · 29/01/2023 16:14

@Sublimeursula Paeds reports back up what we say and he has agreed shows lots of traits and highly suspected to be autistic. We've sent paperwork off to the pathway which will get him the diagnosis but the wait times are just so horrendous in our local area.

Nursery - they do give him extra supervision than normal because he needs it. He only goes for afternoons (2.5 hours) as he gets picked up earlier then the rest. They have nappy changing facilities. Apparently he is not the only child still in nappies there so this is not a problem for now but suspect it will be further down the line

OP posts:

JustKeepBuilding · 29/01/2023 16:14

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

It’s not that hard to understand. Many DC are in the same boat. The waits for diagnosis are long.

The school are probably ‘coping’ the same way many others are with DC with SEN without an EHCP. They muddle through without the child’s needs being properly met.

Original poster

gkkp · 29/01/2023 16:15

@JustKeepBuilding Has explained it very well. I definitely feel nursery could meet his needs better but there is only so much they can do whilst we wait for additional funding etc

OP posts:

JustKeepBuilding · 29/01/2023 16:27

gkkp · 29/01/2023 16:15

@JustKeepBuilding Has explained it very well. I definitely feel nursery could meet his needs better but there is only so much they can do whilst we wait for additional funding etc

Even with early years inclusion funding, which I presume is what has been applied for, DS’s needs could be better met with an EHCP so do apply ASAP.

bagelbagelbagel · 29/01/2023 16:36

OP I would be triggering EHCP myself at this stage as it sounds quite a lot like mainstream probably isn't the right environment for your DS.

All the information you need is here: www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

WagyuBeef · 29/01/2023 17:56

Have you read this, it gave me a lot of hope:

Son-Rise: The Miracle Continues amzn.eu/d/d4RI6v6

Underhisi · 29/01/2023 17:59

"I can’t understand why so much medical involvement but no diagnosis?"

It's quite usual at this age. With my ds (who would be considered profoundly autistic), they wouldn't begin looking at a diagnosis until he was 3 and it then took 10 months before it went to the panel and I have heard the wait is much longer now

tulipsunday · 29/01/2023 18:06

www.singandsign.co.uk

Might be helpful - I did the online course. Can learn some simple signs that may help with communication

neverbeenskiing · 29/01/2023 18:30

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

In my area, and many other localities, there is a 3-4 year wait for an Autism assessment on the NHS. Being open to Paeds, SALT or CAMHs does not bump up up the list. It is not unusual at all for a child with multiple services supporting them to still be undiagnosed, hence why EHCP's are based on evidence of need rather than diagnosis.

x2boys · 29/01/2023 19:05

Underhisi · 29/01/2023 17:59

"I can’t understand why so much medical involvement but no diagnosis?"

Similar with my son has 13 in May and severely autistic,with severe learning disabilitie s ,he was diagnosed at three and half after seven months of assessments ,it also went to panel ,this was 2014 thoygh.

Original poster

gkkp · 30/01/2023 19:34

Today has been hell. Meltdowns, tantrums at the slightest thing. Resulting in kicking, screaming, crying, slamming doors, throwing things. What do I do? I'm on the verge of tears, it's so miserable.

OP posts:

Goingoutoutout · 30/01/2023 19:55

Op I could have written your post almost word for word. My ds is in school nursery he goes full time and they have put 121 in place for him back when he started in September, this has been invaluable to him. The whole class are learning sign language together, he is also learning this at a slower rate then his class mates but again this is a massive help to him and us to help with communication they do pecs and picture boards but he’s not picked them up as well. Your ds will be eligible for sen funding too which is something the nursery can apply for. My ds has an EHC plan that should be completed and sent to the la this week, you do need this to go to special needs school if that’s what you want (we do) he sees a salt every month and a member of the senas team that’s your (local authority sen specialist) visits him every week in school to further support him and his teacher and his ta. While my son is in school all this I available in private Nursey too. The first (and only signs) he knew for a long time we’re please/thank you, he does the same for both but it was something he could communicate to us and us to him. We are strict with bedtime routine and he has no toys in his room, he actually hates any type of cover on him. Hope some of this helps. And massive hug and handhold I get it.

JustKeepBuilding · 30/01/2023 20:17

If you haven’t had an OT assessment at home you should ask for one. They can look to make the house safer including things like door guards so DS can’t slam the doors.

Some find Yvonne Newbold’s resources and Ross Greene’s The Explosive Child book helpful.

SlaveToTheVibe · 30/01/2023 20:23

My son was like this

starting melatonin was a game changer - once he was getting enough sleep he was so much better

then because he was calmer and less stressed everything else gradually improved.

so my first suggestion would be - if you have plenty cash get the dx done privately

doadeer · 30/01/2023 20:26

My son is similar he just turned 4. It's got much better since he started melatonin, he only has a small dose but it's given us our evenings back.

He only manages two hours of nursery school, so I'm with him for 12 hours a day. It is exhausting.

What else can the school offer? Do your local authority offer you speech and language or anything? Have you done any autism courses?

doadeer · 30/01/2023 20:28

You need to start the ehcp process, it took 6 months to get ours when my son was 3.

Original poster

gkkp · 30/01/2023 20:28

The guilt I feel is horrendous, it's really getting to me. I know he can't help how he is but honestly at the minute I am not in a place where I feel I can handle everything day to day. I just want a break.

Bedtime was difficult again. Screaming because I told him no more snacks and it's bedtime soon. Cue total melt down. In the end I couldn't listen to it anymore and I put him in bed. He was crying so much, I got really angry and shouted at him. Now he's asleep I just look and feel so guilty how could I shout? I'm a terrible mum, I know I am.

OP posts:

doadeer · 30/01/2023 20:32

You're not a terrible mum but you're exhausted.

Get melatonin from paediatrician. It's not drugging your child. It's a medically prescribed hormone like the pill.

Are you a single mum?

Hankunamatata · 30/01/2023 20:48

Push for ehcp now. You can apply yourself. Reading your description a mainstream setting would really struggle to meet the needs of a non verbal reception child in nappies. You both don't need that. Push and push hard now as sounds like a special school placement would be more beneficial

RandomMess · 30/01/2023 20:57

Any parent would struggle, be kind to yourself and listen to those that have trodden a similar path before you x

Goingoutoutout · 30/01/2023 21:13

Your absolutely not a terrible mum! Your just in survival mode in the moment. Tomorrow is another day, try and relax tonight. Youv been given some great advice on here so you can make a start with working through that this week. In the immediate have a fun day tomorrow if you can mine loves trampoline parks and they are great for letting them burn energy, simple songs and miss Rachel on YouTube also keep him entertained if I need a minute. Youv got this.

RosaGallica · 30/01/2023 21:17

You’re a hero mother.

Local Authority SEND IAS (information, advice, support) may be able to help too, certainly with EHCP - every local authority has one. Google yours.

JustKeepBuilding · 30/01/2023 21:23

Be careful with SENDIASS. Some are good, but too many repeat the LA’s unlawful policies. IPSEA and SOSSEN are better.

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