Any mums to autistic children advice needed

[NicholJO]

Hi all will try to keep this as short as possible
My daughter is 4 now from about age 2 we new there was something different about her. (she was born with a medical condition called saggital craniosynostosis) she used to get angry and upset about the smallest thing she been see by doctors the specialist said she definitely autistic and possible none verbal autistic as she doesn't talk she growls but at the moment it's getting worse I can't move anything ie put new duvet cover on bed move a new tv in the bedroom without her having a meltdown the last 6 weeks I have been sleeping on beanbags on bedroom floor as she only wants the bed for her and daddy if I go near the bed she kicks bites scratches me in the day she's good as her meltdowns about the smallest thing but my question is could this be to do with her autism doctor can't help much as she's still on the pathway and not been diagnosed yet
thank you for reading

Yes, those all sound like issues we see in autistic children. Do you have any support? Is she at nursery/school? The waiting lists for assessment are so long now that in most areas you can get support even while waiting.

CanaryCanary thank you
Yes she goes nursery 2 days a week they love her and are trying to help everything was delayed as in August she had 9 hour major skull surgery at bch to completely cut her skull from left to right due to her medical condition as she had pressure around her brain now I'm being told its a 2 year wait for speech and language she is in the process of having to special education plan as she cannot go mainstream school as she needs constantly watching until then I was basically told get on with it

Ah gosh that’s hard. If you try googling the name of your area and for SEN/autism/disability support groups it’s likely there will be parent and volunteer run services that may help. I know in our area for example there are SEN play sessions, there’s help with filling in forms for DLA and carers allowance, there’s charities offering reduced rate speech therapy to those who need it etc. Migut be worth looking to see what help you can find?

Thank you yes I will try definitely Google that I will also try to speak to her autism specialist as he's not aware of the change in her in the last 6 weeks ( ie getting more violent loads more meltdowns and how she's behaving) think I definitely need a book about autism even if it just helps me help my 9 year old boy to understand he loves her so much and wants to play with her but everything is on her terms it don't help that he as sensory issues

First fix practical issues, you shouldn't be sleeping on bea bags on the floor.
Get a full size bed to go in Dds room and sleep in there. Or get a small double and DD and DH can sleep in her room on that asserting the boundary that her room is for sleeping and your room is for adult sleep.

Have you tried teach her/the family sign language, it can decrease frustration and violence greatly as she becomes able to communicate some of her needs. You can teach her BSL but Makaton is easier for people with significant needs as the hand shapes are easier.

Changing duvet covers etc just buy multiple of the same one and do it when she can't see.

I don't know anything about her medical condition so I'm not sure what is the autism and what is her other condition.

Makaton is easier for people with significant needs as the hand shapes are easier

I was just answering to suggest Makaton OP. The Makaton Charity will point you in the direction of resources on your area that could do face to face teaching of it. Here’s the link for you.

https://makaton.org/

FloraMacDonaldsFancy
Thank you I will definitely try this I'm just a bit overwhelmed at the moment it's like I'm learning something everyday if it's overwhelming me it must be so hard for my little sweetheart as she cannot express herself

Singleandproud
Thank you yes will definitely try this we have a brand new single bed in her bedroom I have tried sleeping in there but it's a very small box room and I feel anxious and panic in there so I can't sleep daddy as took her in there with him on multiple occasions but she as a complete meltdown I know its my fault its like this a shouldn't of given in to her but I love her so much its so hard seeing her screaming and crying as she can't express herself and she doesn't understand

Buy her school uniform ASAP and leave it in her wardrobe to get used to.

@NicholJO it's not your fault you do what you can, it will be a phase, it might be a long one, but she won't sleep in there forever

It's great you have a single bed already, just take the mattress off and sleep in a different room, perhaps the living room that we you will be properly rested and ready to deal with whatever she throws your way. It's much more challenging if you are sleep deprived too

Have you thought about getting her a little pop up tent? Put some cushions in, and blankets, some sensory toys and see how she likes going in there.

feathers boas, textured things, some fairy lights for the wall weighted blankets can all help with sensory overload - squeezy balls

I would work on the presumption that she has a diagnosis and do all the research you can do, without overwhelming yourself. Presume she had sensory needs and find ways to help her with them. In some ways getting a diagnosis makes little difference other than resources at school, I got an invitation to a parent information night and lots of books with links to websites and that was all, I'm not in UK so it may be better there although I've heard otherwise. If you can get the money I would definitely recommend private Occupational therapy and speech and language therapy, the wait could be detrimental. If you can't pay then do lots of research yourself and get help and advice from wherever you can, the nursery staff, here, a local charity group etc. Sadly it falls too much onto the parents shoulders to educate themselves.

That surgery sounds horrific, must have been really difficult for you.

Just to add, do research on sensory processing, understanding sensory needs would make a huge difference for any child having meltdowns. Sometimes it's more manageable than you think with simple tools you may not have thought of.

I would also add depending on where you are, there are groups for siblings of autistic children to give them support and help them understand about their sibling. I know there is Sibs for any type of disability or additonal need but our local autism support agency also run one.

@tootssweet that's a good shout, your older child is likely to be eligible for Young Carers groups too. And if his school don't know then it's worth flagging up how challenging things are at home s they can offer him some respite and TLC at school, or at least be mindful of any challenging behaviours he expressed there

Thank you everyone
Yes will definitely be doing a lot off research over the next few days I wish it didn't take so long for a diagnosis it took over 4 years for my son to be diagnosed with sensery processing disorder I'm going to try and get all the help and support possible for her as the specialist said she's definitely autistic he thinks moderate to savere sorry about spelling mistakes new phone can't get the hang off it yet