Autistic child ‘it will get easier’ does it really??

[Sleepdeprivedmamma]

Hi

i feel like a bad mum for even venting like this but i just wonder if we are alone
DD is nearly 7 - Autistic (diagnosed the day she turned 3) and is on the pathway for an ADHD diagnosis
she has an EHCP and she attends a specialist school

everyone along the way has said - it will get easier - it gets easier with age etc
it just keeps getting harder 🤯🤯🤯🤯
she constantly screeches now and it feels like torture like my brain cant function when she does it (almost every waking minute) she does it regardless of if she is happy or sad. I reached out to school for help but they just said its a phase. Shes been screeching/screaming since feb.
that aside she is just relentless. Besides school we have no help - she was assesed by short breaks and they agreed she could have a pa 10 hrs a week in the school holidays as help but this was 18 months ago and they said they cannot find anybody suitable for her / ‘funding is sat with managers for sign off’

i feel awful for saying this because i love her endlessly - but i feel sick with anxiety for the summer holidays. I just cant cope.

for some does it just not get easier???

Oh no im a catastrophic worrier so im already at that place while still feeling like im at the begining grieving too. A great combo

that scares me - i dont know who would/could take her so dont know what we would put in will.

so our area dont fund sensory in OT though im told there are ways around this
do you self refer to la ot? x

Often our young ones plead not to go somewhere yet when they do they enjoy it.

You aren't pathetic. It's very difficult parenting on this situation as it's heartbreaking seeing the vulnerability of our kids. You must prioritise your well being above everyone. You have to have a break. Even if she screams the house down, regular good experiences at these types of clubs will help give you a break.

Guilt is the toughest part. You're one person and you just can't do this alone without breaks. Some contact in these groups are going to be beneficial.

I'd definitely explore the music idea. My teen has tics that involves screaming sometimes and the music seems to address it. Headphones and his own music system and choices.

@hellooomynameisbillyballoonhead ahh okay will contact gp about this tommorrow! Thank you!

😂 will join you for the 11:16 teapot worship!!

Oh no - i often hear surrey/devon is difficult? Im northwest an getting the ehcp was fine i did this when she was two. But the shit show we had with school placement 🤯🤯🤯🤯🤯 a long long unbelievable story.
when we drive past the mainstream school she had to go to last year she cries and covers her eyes. Absoloutley breaks my heart x

School is the only break at the minute bar that one group she tried in april. And when i say breakni still have the 7 month old attached to me every minute of the day and often the 3 yr old too (he does go to nursery 3 days and starts school in sept. Sob)

the guilt is wild. Cannot win

she does enjoy music - loves rock or classical in the car (loves a long drive - country lanes no traffic lights only - for regulation) at home loves nursery rhymes on the speakers as she free jumps from furniture but shes never liked headphones well she wont try them - i think she would if she would try so will have another go! X

Nah it hasn't gotten easier for me. It's just that they get stronger and their screams become louder/ more intense and people around you stop thinking 'oh its a temper tantrum', and you say bye bye to your social circle. Aah what a cheery person I am

@wizzywig appreciate the honesty!

ive already waved by to the social circle so only my sanity left to bid farewell to then?
how old is your child x

In times of desperation I use bribery.

If you try this activity, I believe it will be a fabulous achievement and you're going to have the best time too. I know you can do it and as a reward for being so independent I will get you x,y,z.

In this situation it does work for me but I have ended up having to reward an awful lot of stuff.

With the music, my son has Alexa too with various sound apps like rainforest or rain. That helps. Ot just choosing any music and no headphones needed.

I'll be honest. Once they leave school, it is far from easier. When they are children there's lots of parental support groups, more funding. Once they leave school, if they live at home with you, you are responsible to keep them engaged with the community, you get to pay for a lot more (I guess you could refuse) and the support groups aren't there. You also start to face the long term questions of what happens to them if they need a lot of support and you are getting older/will die one day? And mine is at the higher functioning end compared to what you describe.

You are not alone and it does get easier. And can turn out better than you expected. I was fortunate in that it was only ds and me so I had no other people to consider and could put my efforts solely towards him.

It involved shifting all of my expectations to neutral and finding what worked for him. It's taken many years and ds probably passes as a normal human being better than I do nowadays (small wonder).

I'm waving him off to Uni in Sept (age 23) and no prouder mother exists than me. Rely on no one to help you but take on board any help you may receive and let your dd be and she will become.

@groomthedogs thank you!
how is your child doing now? X

@TheHateIsNotGood this is so lovely! Wishing your son lots of luck and success at uni x

My child is happy and doing well. Early 20s now. I can't work more than very part-time to meet their needs. A lot of time is spent taking them to activities to keep them busy, otherwise they'd happily sit at home all the time. Few of the costs of these things are covered, so it comes out of the household income. We are putting trusts in place to make sure our child is provided for when we are no longer able to do it one day, though hopefully that is a long way off. They will probably never be independent, even though relatively high functioning, and it's all on us to make sure they are having their needs met, and their future security. It's so much easier when they are minors and get things funded and there's lots of support and interventions available.

It peaks and troughs in our household. Mine 16 and 13 now. ND and hormones can be a very challenging mix. In many ways I’ve actually found it harder as they’ve got older. Secondary school has been a special kind of hell for my eldest, it will take some time I think for her to heal. I just take life one day at a time. Although I’ve had low ebbs with feelings of suicidal ideation previously.

I’m still grieving for the ability to do “normal” family stuff. He’s 12.
We have a (mostly ) neurotypical younger child as well, and i’m grieving for the things he’ll never know. Like going to a restaurant as a family,
But life is much better now, we haven’t had a proper meltdown in months.

You need to get it in section f of the echp and it needs to be worded so that there is no question as to what must be provided. If you can pay yourself get a report via an ot that is post degree level trained in si. You may then need to goto tribunal via ar or re assessment of needs to do this. Sossen are a massive help with this, they have a free helpline you can call. There's also a Facebook group called educational equality where there are inde professionals, advocates and parents that will help you in terms of ehcp. From what you've wrote I think it'd be worth exploring an ot.

Op my ds is 7, autistic and also at ss. You have my sympathy, shouting and screeching is horrendous here. Got some short breaks activities to attend but never enough. Currently having meltdown over two clocks not in sync. Waiting desperately for the day it gets easier but no sign of it here 😕

Yes I think he probably does have ADHD too in our area they don’t diagnose until they are 6 so the school referred him when he turned 6 but we are still on the waiting list 18 months later! I know he is so strong already! 🙈 His school are amazing and supportive we feel lucky he gets to go to such a good school. It’s when he’s not in school at weekends & holidays that are difficult

Just a quick thought - I wonder if the screeching / screaming might be meeting a sensory need she has for her mouth / throat? One of mine (on pathway) has always been very verbal, makes lots of repetitive noises, and we established a while ago that it is because they like the tickly feeling when their throat vibrates (from the noise). When we have wanted them to be quieter, on occasion, we have given them minty or menthol chewing gum to chew, to give some sensory feedback (instead of the repetitive noises). Or you could try them with sucking an ice cube, for a different sensation.

It sounds like your dd really likes to climb - could you get a climbing frame for your garden, maybe with a swing / rope swing attached? Climbing (and spinning / swinging) might be good things for her to do which might help regulate her.

For quite a few years we had one of those pop-up festival tents that we put out in the garden during the day (and put away at night, so it didn’t go mouldy), and I gradually bought lots of those ball-pit type balls (bags and bags of them). My dc loved being zipped into the ball pit tent, and rolling around in it!

We also have a gym ball out at the moment in the living room (one of the ones that you sit on), and a peanut shaped one, mine love bouncing and rolling on those inside the house, and it seems to really help.

It can get easier. Depends on the child/adult/local services.

If she likes balloons, how about a swing ball set (as the ball is on a string) or a ball on a string hanging from a tree? A bubble machine? Something she can post items into? We had a mailbox on our climbing frame for posting.