What will our lives be like?

[Vni8w]

Would be really grateful if anyone is able to share their experiences.

I have an almost 3yo daughter who was diagnosed with autism shortly after her 2nd birthday. I will summarise the main issues we have: she has a speech and language delay, she doesn't always answer to her name, her communicative intent (using language but also gestures) is lacking- so she seldom points and doesn't respond to someone pointing. She is unable to wait, she hates transitions. She has frequent meltdowns in public. She screams at people when we're out and covers her ears. She cannot self sooth without a baby bottle. She refused to drink from anything else. When we're out, she has a bottle in her mouth and I top it up with water continuously. She uses the bottle of water to sleep and needs is topping up during the night. She isn't potty trained and is always always leaking. She often climbs out of the pram even when strapped in and physically fights being held or restrained for her safety. She has issues around food textures so she never really tries new foods. She's been on the same meals now for about a year (variations of porridge and stews). She doesn't self feed. Her communication is improving but her meltdowns are getting worse and more frequent. She has recently started holding in her poo. She can go days without a bowl movement and is incredibly distressed when she does have a movement (her poo is soft).

She's recently been awarded high rate care DLA, and it's been a bit of a wake up call for me. I think I was in denial about how she was doing and how I am managing. I created this small world with strict routines and a safe place at home and pretended to myself that I was coping. But our world is becoming smaller the more difficult she is when we're out/with other people. She's due to start nursery in a couple of weeks and I genuinely do not see how she will settle.

I'm desperate to speak to other families with a similar sounding child but a few years ahead of us. How does life look for your child and your family?

Thanks in advance

It is really hard when all you want is answers, but no-one can say what your live will be like in a few years.

Does DD have an EHCP? Have you spoken to the nursery about support? Is it a mainstream nursery?

I would visit the GP about the withholding. The earlier the better in terms of dealing with it.

Has DD had an OT assessment? Does she see SALT?

Have you looked at harnesses DD cannot escape from?

Do you think DD should be receiving high rate mobility DLA too?

Thanks so much for responding.

No EHCP yet, but it's in the pipeline. Just waiting for her to start nursery.

I had a telephone appointment about the withholding. They just offered me a stool softener.

She is under SaLT. We have an therapist who has been an incredible source of support for us. No OT. We cannot afford to see anyone privately.

She refuses a harness, body or arm. It's infinitely more difficult using a harness.

Given her age, I don't think she's entitled to mobility DLA. She's been awarded high rate care until she is 7.

Thank you again for responding.

I would request an EHCNA now. On their website, IPSEA has a model letter you can use. You don’t need to wait until DD starts nursery.

In the meantime, I would speak to the nursery about early years inclusion funding. Let them know DD is receiving DLA too because they can receive disability access funding.

Some areas have early years assessment places for those going through or needing to go through the EHCP process. It is worth checking if your area has any.

You could look at an OT referral on the NHS. In some areas you can self refer, if you can’t the GP or HV will be able to. Not all ICBs commission sensory OT on the NHS, but it is still worth it even if your area doesn’t. If you request an EHCNA and the LA agrees to assess, an OT assessment can be part of the needs assessment.

Where the criteria are met, HRM DLA can be paid from 3.

I meant a harness for the pushchair to keep DD safe rather than reins/a walking harness.

@Vni8w Following this as you dd sounds very similar to mine . Would like to hear peoples experiences with how things changed & developed over time .