I could really use some help re Cognitive Disability

[Eyelet]

Firstly I don't even know what to tell people is wrong with DD, she suffered a brain injury when she was born and she has always been described as having developmental delay. She was doing really well until she was almost a year old and then she got very ill, had several seizures and it was after that its been more difficult. But describing her as having learning disabilities are generally construed to mean dyslexia (according to my teacher SIL) and DD is way WAY beyond those!

As shes got older its become harder and harder for her to play alongside her peers. She isn't statemented (yet) but does get a few hours 1-2-1 a week at nursery. We don't go on playdates or out much because her behaviour is so atrocious. DH and I communicate by text because when we try and talk to each other she just screams and screeches. She was very late to talk (now almost 4) but because she had so many physical issues when a baby/toddler we concentrated on those and did lots of physio/OT.

Now it feels we've been left to drift. I don't know how to help her, I suppose after almost 4 years with very little help I am exhausted (we have a typical baby too) and all the 'just read to her' or 'play alongside her' doesn't make any difference.

Very very fed up.

[ouryve]

Does she go to nursery, Eyelet? When does she start school?

I think it would be worth you pre-emptively visiting some special schools, if you haven't already, so you can ask about how they work with children like yours. If you haven't done so, or it hasn't been done for you, then you probably also need to apply for statutory assessment. (DS2 started nursery with a statement already in place because our paediatrician was able to get the ed psych to come and evaluate him at home, when he was 2.)

[autumnsmum]

I don't know if your dds toilet trained but if she's not once she's four you can get free nappies delivered .i do and there a godsend ! Plus my children love the boxes they come in

[Eyelet]

she does go to nursery yes, although i think they have not been 100% honest about what she does all day. i had to collect baby a few weeks ago and watched dd through the door for 20min and she just stood in the centre of the room chewing a toy and nobody spoke to her or engaged her.

we have started the statement process. she isn't toilet trained although she does have sensation and she can stay dry when she chooses to.

we have deferred her start at school so she will start in 2015. thats based on her being a summer born not having SN.

[youarewinning]

I came back to say did you get DLA! It helps to pay for things that you can do to support your DD. Eg sensory toys etc.

And whilst we are talking about it and our uses - DS has had his iPad, LFT book, the worry book, chew toys, clothes replaced because he still chews them, same with headphones! Special pens and pencils which help cos of poor fine motor skills. And a new washing machine because mine broke and he still has bowel accidents. Oh plus repeatedly replacing boxers he soils and stains and he only will wear one brand (and not a cheap one!) extra think double duvet, noises, heavy cushions on sofa and storage for his room. tbh I have no idea how I afforded things before hand.
that's a lie I was missing bill payments to meet his needs and getting myself more stressed in the process

[quirkychick]

Hi eyelet.

My dd has ds and is 4. She most definitely has learning disabilities!

The best early intervention we had was Portage; but your dd might be too old for this. Speech Therapy is good for us too as it is very structured and the SALT pushes dd to make her achieve.

We use the local Scope branch as they run pre-school groups for children with disabilities. They have loads of expertise and do lots of ot/physio/music/pre-school skills.

The challenging behaviour link looks really good. As an aside, we are putting dd in a bed for the first time. We have replaced one side of the cotbed with a rail. She has not been impressed. We might be in for a tough few loads of nights.

[Eyelet]

I'll investigate our scope branch, I wasn't impressed before because we went when dd was about a 18monyhsr old and they had nothing for very young children especially those who were at that point looking ok. She was stiff but she was mobile, could transition, feed herself.

I think if someone would just sit me down and explain exactly what she was missing, and what preschool skills she needs then at least I could work on them. When we did physio I threw myself into that - does anyone think that this is possible? Mind physio? Or am I deluding myself.

I suppose this is just the next hurdle.

Good luck with the sleep thing, dd has her own bed but usually ends up with us.

[autumnsmum]

Lovely to meet you quirky

[Eyelet]

Thank you - I'll take a look at them when I get back on the computer :-)

[ouryve]

There is such a thing as mind physio - it's usually (but not exclusively) aimed at kids with ASDs and is called ABA! It's not for everyone, but sounds like the sort of thing you're after.

I'm wondering if there's any chance of a referral to a behaviourist with more tricks up their sleeve than sodding reward charts. Actually, your SALT is probably your best friend, in this respect. Your DD's passivity is partly a reciprocal communication issue, from what you describe. A good SALT can make use of techniques to engage a passive or otherwise self-motivated child into adult directed tasks.

[Eyelet]

Thats interesting about the behaviourist, we see our SaLT in a few weeks so I shall speak to her then.

We spent almost the entire day outside today except for her nap, the morning spent with a friend and her twin boys of a similar age. Played beautifully, epic tears when time to come home. Afternoon spent walking to library and shops then home. TV while I cooked.

Days like today I wonder where the issues are. Days like yesterday. Nuff said.