To think that disability socail care for children is useless?

[ScottMumofGirls]

Well, to start with I don’t think Iabu and just ranting here, but happy to be told otherwise.

I have four kids, all somewhere on the asd spectrum, two are borderline, two have significant Sen. One has non verbal asd and six.

When the six year old was three and diagnosed with asd I asked to be assessed by the children’s disability team. It took six months and the outcome was that children under five don’t get help from SS ( not true as I know other kids with asd who live in my area). I was told they might grow out of it ( ha!) and to try again after they turned five. I complained a bit and was kind of threatened by the SW assessing me with sectioning me ( long story but I said if I was sitting on a bridge would I qualify for help - answer was no but I could be sectioned under the mental health act and SW told my husband this) not helpful and made me very distrustful of SS.

Fast forward to now and my child is six, non verbal, at a extremely specialist school and was given highest rate mobility and care DLA at three. My oldest child had a ADOS for ASD as they started to school refuse. So the school home link worker said we needed to try again to get disability team of SS involved. So the home link worker filled in the forms, explained that we have a non verbal child, a borderline asd school refuser, another child placed in a special school and a toddler awaiting a MDA.

SS replied and said we was coping fine ( with a school refuser, me on anti depressants and blood pressure tablets). The home link worker pushed back on this saying we are in crisis.

That was back in Feb. SS never even made contact with me to get any input. My six year old will need SS support post 18 for supported living but they refuse to work with us as I guess they don’t have the money.

My oldest seemed fine until teenage years, second child I thought was just a fluke as no one in either family has any Sen ( but with hindsight I can see that’s not really true - no one has been diagnosed is more accurate). I found out my other child had asd when I was in my third trimester with my fourth child and only at that point did we find out it wasn’t just a random one off.

I guess that only the child with asd needs the SS input but their needs impact on all the kids.

That’s all.

YANBU it is really poor provision and they make parents fight for everything which is exhausting in itself. Do you have a local charity that supports parents through the processes to get help? It should be detailed on the council's local offer on their website. The council have a legal duty to provide support in accessing services but it's often contracted out to a parent-carer charity. They may be able to fight your corner.

We have a carers group but they cover every type of carer so adults looking parents with dementia, kids looking after adults etc. They have also had their funding slashed but at a pinch they can come to crisis type meetings to mentally support me and take notes but nothing practical or on going. Thing is no wants to prevent crisis ( neither do they help out then - school refuser? Borderline asd and struggling to cope with severely disabled sibling? Let me fine you to see if that helps)

I have never had input so I can’t really comment if SS bring any benefit but we just dig ourselves out of each hole. My school refuser was struggling with peoples reaction to the disabled sibling when we go out. So they no longer go out in each others company. It’s not ideal but it’s a solution I didn’t have to beg on my knees for. We just bumble along by cutting corners I guess. Hopefully one day the stares and comments will ease off.

I feel really bitter about the whole thing and resentful but I know the child will need adult SC. I guess we will just be in a position if we are constantly refused where we turn up at 18 and with no prior involvement he gets adult socail care?

Makes me shudder for people who are in a harder position than us. But with such severe needs my child could only be worse if he also needed medical interventions, like a peg, but even then I doubt we would be on the radar.

It was you that had four children. Services are stretched to breaking point and those that work on the frontline are doing all they can with very limited resources. They are putting themselves out sometimes to their own personal detriment.