Just need a rant and advice

[Lankyboxmum]

My daughter is 7 but I think she has a moderate learning disability going on, undergoing Autism referral too but everything takes so long. Problem is I can’t do anything or go anywhere through these holidays due to her behaviour.

I have other children too, who are autistic and adhd, but with the right accommodations and knowing their triggers they love going out and running around parks. The problem is my daughter refuses to walk, she’ll sit on the path and refuse to move. This can be anywhere, in a shop, outside our house, in a random place. She just says she doesn’t want to move, but she says she does want to go to the place we’re going. If I try to coax her it ends up in a full meltdown with screaming and crying and kicking out. Sometimes I have to put her in my 2 year olds pram just to get anywhere. My other children are starting to get sick of not being able to go as many places.

another problem is she has severe chronic constipation to the point she’s constantly soiled due to passing small amounts without feeling it. She also has bad stomach pains due to withholding. She refuses all medication until she ends up in hospital with a enema. Hospital are recommending starting daily enemas at home if she doesn’t start taking her meds. So taking her out and trying to find somewhere to change her pull up as well as dealing with her not walking is killing me. I honestly hate being stuck in and the kids just want to get out and about, I feel so sorry for them.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DC.

Also HomeStart might be able to support you.

Have you considered using a SN buggy or wheelchair?

I don’t claim for her as I have no proof of anything, apart from the constipation. Her behaviour at school isn’t a problem - she’s quiet and very behind but they don’t see behavioural problems. I’ve never applied for a carers assessment as the thought of a social worker terrifies me for some reason.

Ive thought about using a disability pushchair but people tell me I’d just be enabling her, when I should just be making her walk. Plus with professionals not seeing the behaviour side of her needs, I feel like I’d be judged for trying to make her seem worse than she is.

You don’t need a diagnosis for a social care assessments. No need to be scared of social care and it’s a separate team to the children’s safeguarding team. Nor do you need a diagnosis to claim DLA.

Ignore anyone judging you. If a SN buggy or wheelchair would make life easier for DD, and subsequently the rest of the family, don’t pay attention to what others think.

I’m sorry OP, that sounds like really hard work. Please apply for DLA if you haven’t already done so. It’s all about how much extra care she needs in comparison to her peers. Send all the evidence that you can. I’m not sure how respite care works but perhaps look into this too?

Is your daughter not walking because she has ASD, limited understanding? Then that's a special need so a buggy is a sensible choice. It sounds like it would make your life easier and have a positive effect on the whole family.

Is the constipation giving her such bad stomach pains she doesn’t want to walk? Wants to sit in the foetal position? How does she move at other times?

is she trying to avoid going to the places you are taking her? If so would the buggy be a safe space for her?

Who is telling you that you’re ‘enabling her’ if they have less knowledge, experience than you or don’t have professional expertise than dismiss them.