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Here some suggested organisations that offer expert advice on SN.

I could really use some help re Cognitive Disability

(40 Posts)
Eyelet Sun 23-Mar-14 13:26:28

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.

autumnsmum Sun 23-Mar-14 13:45:26

Welcome your sil is incorrect dyslexia,dyspraxia etc are specific learning difficulties .the learning difficulties your dd has are classed as mild, moderate severe or profound and multiple.lecture over welcome it sounds as though things have been really tough ! I have a dd who is 4 who has autism and cognitive impairment

Eyelet Sun 23-Mar-14 13:54:25

Thank you for the lecture :-)

Can I do anything to help her? After she was born she was classed as having cerebral palsy in every limb and with Physio, OT and her brain improving she has gradually got better and better. Is it an unrealistic hope to think we could do something like that with her learning skills? Its like groundhog day around here and most days end with me in tears or just wanting to scream in frustration.

I just feel so useless. People keep suggesting reward charts etc but she cannot be incentivised - she simply does not care ^ at all^ about anything. She likes things, but not having it or working towards other things (clips for her hair or a pretty dress) goes right over her head.

Eyelet Sun 23-Mar-14 13:56:29

The specialist HV and her paed team says she isn't on the ASD (I think its not uncommon for hypoxic babies to develop traits?) but I don;t know why they say that.

What support do you get (if you don't mind me asking?)

autumnsmum Sun 23-Mar-14 14:16:51

No problem nice to meet you ! Dd2 attends a special school although she is verbal . Previously we had portage and speech therapy . I understand as well about reward charts not working

autumnsmum Sun 23-Mar-14 14:19:03

Also there is a thread on here for parents of Children with cerebral palsy , some of them may have some good ideas .

Eyelet Sun 23-Mar-14 14:39:38

Thanks - the CP isn't really an issue these days, she has full range of movement and function, its still on her notes as she has a little residual stiffness. Its just the cognitive stiff I am at a loss with.

Can I help her? Whats her future, I don't know at this rate if she will even be able to attend mainstream as her behaviour is so erratic. Or live independently.

autumnsmum Sun 23-Mar-14 14:43:51

As far as mainstream school goes I love my daughters special school she has made lots of progress there . I suspect my daughter won't live independently . Have any schools been suggested to you?

ouryve Sun 23-Mar-14 16:44:07

The sort of rewards she'd benefit most form are immediate rewards for little tasks, rather than any sort of cumulative rewards. The sort of things that first motivated DS2 (he has ASD and severe learning disabilities)we things like the chance to watch cars go down a clik-clak track (that progressed to him doing it himself) and "feeding" animals on a noisy toy.

He is only able to be in mainstream because he has a wonderful 1:1 who has an excellent rapport with him. We'll have to look at special schools for secondary, though. He's in year 3 and not level 1 yet and is still mostly non-verbal.

youarewinning Sun 23-Mar-14 18:52:56

Does she like lights? I find they help my DS. Fast spiny disco ball or slow lavas lamp depending on what input he needs.

Can you ask the OT about about sensory processing and an assessment. If she is having difficulties processing the sensory stuff around her that may be why she screams. Children with sensory processing difficulties often find it hard to settle down and learn new skills until those needs have been met.

You can try some things yourself. Wrapping in a duvet, punching pillows, swinging high on a swing or calm gentle lights and white noise. You'll find out what works as you experiment.

I agree with ouryre as well - instant rewards are a great incentive. Is there anything she particularly likes?

And yes, she has LD. That's not dyslexia. In fact the only thing we do know for sure about my DS is that he is not dyslexic but he's classed as having MLD due to literacy, social and emotional needs.

Eyelet Sun 23-Mar-14 19:19:51

Thank you for your help, I do appreciate it.

She has in the past been considered sensory seeking, before she learnt to talk she would be constantly moving - gradually as her communication improved so did her ability to sit still.I remember the phrase vestibular feedback being mentioned.

The sound (white noise) has been suggested before, I used to put cbeebies radio on during the day and that used to improve her concentration. This current chaos phase seems to have been since just after Christmas, before that she was showing signs of being ready for toilet training, playing happily with stickers for 10-15minutes, asking for items rather than having a complete screamfest etc.

Her sleep overnight isn't good either. But I cannot think of a single thing at the moment which would work as reward.

zzzzz Sun 23-Mar-14 19:44:23

Ooh hello eyelet you so just found your home from home. grin

I have a feeling my evening is not going to be MN friendly wink but I hope you will keep posting.

My dd3 has epilepsy (hard to control started at 11 months) and ds1 is neurologically different, no definitive dx yet but probably severe language disorder/ASD/????

What meds is your dd on?

Rewards only work if your child can understand and retain all the necessary ideas and stay on task. Just tell people point blank "she's not there yet". If they insist say "would you suggest this for a small baby". They will splutter and be embarrassed but it's there own fault so ignore their discomfort.

That said "cause and effect" might work. She does something you like, something fun happens, she doesn't nothing happens. Keep everything tiny. Make up the rules in your head and stick to them. So "if dd doesn't pull my hair while I help her put her trousers on, I will sing that song she likes". For mine it worked better without too much explanation. Life was just better when things I liked happened.

Ineedmorepatience Sun 23-Mar-14 19:47:44

Hi eyelet and welcome to the board. I wondered if your Dd screams because she can't communicate very well, I know you said she can talk but can she tell you how she feels or if something is upsetting her?

My Dd has delayed emotional/social skills because she has autism, she can talk really well but she cannot explain how she feels or even recognise her feelings. This leads to lots of crying and rolling around on the floor when she is anxious or upset and I have to try to work out what is wrong!

I can imagine that you must be exhausted if she is challenging every day and not sleeping well, do you get any respite?

Do you have a family support worker? If not go to your nearest Sure Start Children's centre and ask what support is available for families with disabled children. They should be able to help you make sure you are accessing everything you should be.

They might know of a local support group where you could meet other families in the same situation as you. Keep coming on here for advice.

Good luck smile

Eyelet Sun 23-Mar-14 20:46:32

<settles in and offers bourbons>

zzzzz Currently dd is nonmedicated but the neuros say she has a higher than average risk of developing epilepsy and we are currently monitoring for absence seizures. How old is your dd3? We carry Buccal Midaz for seizures - she goes into status without it.

I like your suggested responses, my most recent day out with 'friends' had one agreeing there was something not right with dd, one telling me she was a bright cookie and would get there in her own time and i just had to support her and the other telling me how early her dd PT and how much of a help she is.

We don't go out much.

Life was better when things I liked happened yes that might work, but even then I spend all my time firefighting.

ineedmorepatience <- me too

Yes I think she can say if she is upset but usually its over something I cannot fix, but possibly on an 18-24mo basis rather than almost four. She didn't start to talk until just before her third birthday - but as soon as she did it was useful rather than one word at a time. We aren't eligible for respite although we have a homestart person come and she backed us up recently with dds behavior and so she is being assessed by an edu pychscologist.

Its just a rollercoaster and we worked so bloody hard to get her physically more able and i suppose i have coasted for a while but now having to acceot all over again that she really is less able cognitively.

Most days I despair of ever being able to cope,

autumnsmum Sun 23-Mar-14 20:50:42

Eyelet lobs a bourbon back at you it is really tough I'm so glad you've come here my dd is four and a half and functions like a two year old . Please tell me if I'm being nosey do you get disability living allowance you certainly qualify

Eyelet Sun 23-Mar-14 21:09:22

No - we have foolishly refused to apply. Maybe I thought it was an act of acceptance too far?

Now I feel so guilty most days for just wishing we had the money so that I could pay someone to entertain her while I played with the baby - who for the record is the sweetest little character - just so I don't have to listen to the bloody yelling and mayhem.

How do you adjust? my 9mo can entertain herself better than dd1, she makes toys work more easily, has an innate curiosity and a light in her eyes.

ouryve Sun 23-Mar-14 21:10:59

I stumbled upon this organisation a few days ago, btw. I could have done with them a few years ago. There's some excellent advice sheets, particularly around working out why a certain behaviour is exhibited and how to head it off.
www.challengingbehaviour.org.uk/

zzzzz Sun 23-Mar-14 21:11:27

We carried midaz for a while but it didn't work for dd (she just fits again and again rather than status we were in hospital for 57days the first time). Then we carried paraldahyde for ages. We've been seizure free for 2 years now so we are med free and winging it! shock grin <wibble>

Ds had very delayed language. It was very noisy and frustrating. He is enormously easier now and improved year on year. I think a rough diary helps to cheer you up when you are feeling a bit grim. I video triumphs on my phone and then look back and can't believe how far we've come!

ouryve Sun 23-Mar-14 21:14:40

And do apply for the DLA - it'll make a difference, even if you end up using it to pay a friendly teenager to coo over your baby (who will soon be a toddler!) while you deal with the tricky stuff with your older DD.

zzzzz Sun 23-Mar-14 21:15:10

grin <whispers I still haven't applied>. I'm an silly though. It gets more expensive and if you don't need it now, save it for later.

ouryve Sun 23-Mar-14 21:17:11

Another way that I fnd DLA helps is with those situations where we realise OMG DS2 has really taken a shine to these, so we go out and buy all of them!

autumnsmum Sun 23-Mar-14 21:24:17

Ouryve I think dla has paid for what seems like the entire fisher price lAugh and learn range for us

Eyelet Sun 23-Mar-14 21:24:54

I think the current problem is that I want to play with the baby!

We know she has an attachment issue we just haven't worked out exactly what yet - we have quite a stressful home because I work odd hours/days. DH is very very hands on and deals with her most of the time.

I just want to know whether there are 'exercises' I can do with her which might help, will she improve? We haven't seen a plateau yet, just a delay, but nobody really wants to talk about cognitive stuff.

ouryve Sun 23-Mar-14 21:29:21

zzzzz - that car seat we ended up buying when we realised that no amount of wishful thinking would ever stop DS2 escaping from the Crelling harness was £500. Just being able to say, right, we have a serious problem, and this looks like the only way we can fix it and we have the funds put by to fix it is a total sanity saver. Similarly, it was useful to have the money put by from DLA for DS1's OT evaluation, last year, after we gave up trying to get anything out of NHS OT for him, never mind a written report of any sort. Smaller costs have been things like replacing chewed clothes, replacing shoes or coats that have been worn twice then completely rejected, new locks for various doors around the house, replacing a child gate with a tall dog gate, replacing the rain hood on the mac major - all expenses arising mainly because of the boys' disabilities.It's so easy to overlook things like this as stuff you have to do, without it even registering that with a NT child this age, it wouldn't be happening.

ouryve Sun 23-Mar-14 21:30:33

Same here with leapfrog, autumn! He even has 2 versions of one toy, as it changed and he wouldn't let us leave the shop without the new one.

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