Autistic child getting harder with age

[pumpkinseedss]

I’m really struggling with parenting my autistic, does anyone have any words of wisdom or advice? She’s getting so much more challenging the older she gets I can barely take her out and sometimes feel like a prisoner in my own home. This weekend ive had to stay in as just don’t have the energy. She has to come with me on the school run with my other kids and on Friday she just kept repeatedly saying she was tired and kept lying across the floor on the pavement, it was so bad people were coming up asking me if she had fainted, I kept trying to get her up but couldn’t, our bus came but she refused to get on it as she was “tired” I had to miss 4 buses whilst I ordered a cab but they didn’t have any available so ended up having to cancel it, I eventually managed to get her on the bus but this was an hour later but I can’t keep doing this I feel she is getting way more challenging the older she has become.. She is 14. How am I suppose to manage this situation?

I don’t know, is the honest answer. I often wonder how parents do it - I guess a lot of them don’t

I know that’s useless, I’m sorry,

Is she not at school herself? If not, then I would suggest making that a priority.

Can you self refer to your local disabled children's team at social services for an assessment? They may be able to provide some respite care or even in rare cases home help.

Does she have an EHCP?
What education does she get?

Respite wouldnt help with the school run which is what I’m struggling with, she’s not in school she has a tutor.

She does, she has a tutor.

No answers to help but just know your not alone. My almost 15 DD is an absolute nightmare just now and I can only think it’s teenage hormones making things worse.

Why isn’t she in school?

Because there is no school available for her she’s in alternative provision with a tutor

EBSA

Are you the poster who was asking if your other DC could get school transport because of this a couple of months ago? If so, sorry thongs don't seem to have improved.

If I'm remembering right, she has some kind of muscle issues that cause pain when walking longer distances. I think someone suggested a motorised wheelchair for her, did you ever manage to look into that?

(Sorry if I'm thinking of the wrong person)

OP

I think that you must go easy on yourself too as it is all consuming

Who helps?

What support network is around you?

Can you tell me a bit more about why you can’t leave her whilst you do the school run? I’m not being thick, I have ND DC myself and I know that they’re all different.

How old are your other DC? If you’re can’t leave DD, are the other DC old enough to come home without you?

I did this and had the police called on me so I won’t be doing that again.

And no my youngest is 8 and isnt allowed to travel alone to or from school not that I’d let an 8 year old get the bus alone anyway

My children don’t have autism or any disability as far as I know, but come on. It’s fairly obvious, isn’t it?

I do not have anyone that can collect my other children from school every day or take them to school unfortunately

Request social care assessments. A carer’s assessment for you and an assessment from the children with disabilities team for DD. On their website, Contact has model letters you can use. This could fund a PA who could care for DD during school run times. Children’s Services will tell you they can’t, but in exceptional circumstances, they can fund a taxi to take your other DC to school too.

In the meantime, would DD use a wheelchair or SN buggy? Does she have noise cancelling headphones/earphones? Would sunglasses &/or a big hoody help?

When you say no school is available, do you mean you have EOTAS/EOTIS because it is inappropriate for provision to be made in a school or do you mean the LA has told you schools are ‘full’? If the latter, have you appealed? On its own, being ‘full’ is not enough of a reason to refuse to name your preferred placement as long as it is not wholly independent. If you have an EOTAS/EOTIS package, what does it consist of other than tuition? Could you arrange provision to cover at least one end of the school day?

Is DD receiving a full-time education? Because the LA has a duty to provide that and if they aren’t, you can pursue legal action to force them to. LAs all too often think a few hours AP a week will suffice. It doesn't.

We are going to tribunal that is a year away. I can’t use a wheelchair for her we would never get on the bus I know technically wheelchairs have priority but it would be a nightmare they are ridiculously packed here as the bus passes several primary/ secondary schools and they are always full by the time they get to us anyway with prams and people standing I think it would make it harder to get them to school.

Have you requested an expedited hearing on the basis DD is out of school?

Could you get a wheelchair/SN buggy that you could fold?

How far away are the schools? Is a bus essential or could you walk it if DD was in a wheelchair/SN buggy?

If you are the poster I think you are, did you request transport for your younger DC with SEN?

Request the tutor comes earlier to be there for the school runs.
And /or
Request ss provides agency carers to be there with her she has the need as cannot be left alone.
Get an urgent ss and education review so that her tutors and / or carers are with her in the home while you are out
There are solutions to this
Ask for them

Or you pay someone to take your other kids to and from school

If a 14 tar old cannot be alone because of their disability and police told you that then request ss funds carers or education funds tutors . Or is a mix of personal assistant and tutor hours
Speak to your local councillor to ask the LA on your behalf to come up with the solution

I can’t push it it’s up a massive hill it would be too heavy. No we are waiting for an educational psychologist no good pushing it forward if she hasn’t seen an educational psychologist as I can’t do the working document without that. The tutor is at the library not at home and I’m not allowed to leave her with them.

Tutors aren't allowed to be left alone with the child.

You can get power assist devices for manual wheelchairs so it wouldn’t be too heavy uphill.

Unless your EP assessment isn’t for, e.g. 10 months, I would still request an expedited hearing now because it isn’t going to be brought forward to the next few months anyway. Unless the assessment is a long time away, there will still be time to use the report to inform the WD before the HD.

Parents cannot be compelled to deliver or facilitate provision. The LA is responsible. That includes funding a second adult if necessary. You need to go back to the LA about that. Some tutors will sometimes work 1:1 with some CYP. However, if this is the poster I think it is, she will need 2:1.

You may want to add a thread in SN where there are very knowledgeable parents.
Have you tried ear plugs or defenders or music. This bus ride sound's pretty overwhelming. (Not a criticism, the system doesn’t take into account that parents of disabled children also also responsibilities for other DD/DS, work etc when deciding the help offered.)