Caring for teenager

For issues related to specific conditions and disabilities.
hi my son is 16 and a fultime wheelchair user,he has multiple physical disabilities but no learning this results in him getting very frustrated at not keeping up with his peers.

I think ive only just realised im a carer as my son is now left school(sitting his gcse). As he wont get the grades to go back to school I am dreading the future as he sits at home staring at 4 walls. And yes selfish as it is it depresses me the thoughts of having him with me 24/7.

He reluctantly puts up with carers from social services twice a week for showering but they can only come at 7am,grand for school days but not during hols etc I have tried applying for direct payments to get more flexibility but its been a year now and 4 cancelled appointments by the social worker and still no nearer to getting anything sorted.

My son has hopes and dreams for the future but at the moment all I can see are the mountains ahead of him. Oh to be young! Image Image
Hi Eagle

I've only just joined this forum. Felt like I needed to talk to someone after a few sleepless nights with my son. Working too, isn't that easy when you've had 16 years of broken sleep.

My son is also 16 years old, he has another year at mainstream school. Like your son, he has multiple physical problems (cerebral palysy/wheelchair bound). He is behind 1 year.

You said that your son has now left school. Is there a local college you can get him into? I'm sure local authorities should be providing some sort of education if he wants it. Failing that have you looked at National Star College (Cheltenham) or Lord Mayor Treloar's (Basingstoke)?

Josef (my son) uses a computer to communicate and is applying for Lord Mayor Treloar's.

We also have a problem changing social care times. I've asked if they can come in the evening instead in the summer holidays, as they couldn't move from 7am to 8am.

Let me know your thoughts and if you want to chat further.

Jugs
Hi jugs thanks for your reply I never thought of asking them to come at night! As it is only for showering he could have the shower at night THANKS will let you know how it goes.

How come your son has another year at school? Is he a late birthday?

It seems to me like my son is being penalised for going to mainstream as due to to missing a LOT of school he wont get the grades he needs to stay on for Alevels.

his nurse who flushes his line says she cant do it when he leaves school but adult services dont start till 18???

His physio says she has been told she cant take him after school unless he has learning difficulties she says there is no provision for physical disabilities!

If he had went to a special school they would have kept him until he was 19 regardless of grades achieved.

He is applying for engineering course at college but been told there is an access problem and they are trying to get him to do IT instead.

My son has brittle bones/spina bifida/hydrocephelus. Unique in all the world so docs say!
Wow, that sounds tough.

I'm sure access to what your son wants to do at College should not be a problem (!). I'm sure it's the law for your son to do what he wants, and for the College to sort it out. Of course I'm no expert, but I'd maybe talk with Citizens Advice about it if that's what he wants to do, and stick your kneck out.

It's sometimes difficult isn't it to keep on top of all these things? Josef has 25 professionals attached to his daily living. Most of them need to be chased on a regular basis, and I have to keep on top of when each appointment is with them etc. etc. Lunctimes usually take up my mobile phone bill.
And then something like this comes along with your son's College and it makes everything that much more difficult doesn't it.

We heard yesterday of Josef's Hospital appointment for his operation on his back. He has scholiosis, and is having his back 'straightened'. I'm taking 10 days off unpaid leave from work and then luckily working from home for 6 weeks.

The whole turning 18/leaving school thing is worrying, and is something that's been on my mind for years. So, can your son hold a pen/write etc. Is he wheelchair bound? What access does he need in College? Is there any professional around who seems like they really care enough to help you push things with your son at College?
It's difficult isn't it.

I'll stop writing there, as I won't stop......

J
Hi J im sorry to hear about josef's back, my friend at school(many moons ago)had scoliosis she had an op when she was 10 to put a rod in her back she was in a plaster from neck to her bottom for a whole year! It was very successful though.

Im not sure but i believe with the advances in medicine they nolonger put them in plaster?

When is he having his op? Is he frightened? Can josef use the computer to 'talk' on msn. My son spends quite a lot of time on msn as he doesnt get out much he would be happy to add to his online buddies.

Thomas can write well, his hands are good, he has reduced power in his arms especially the shoulders.

The OT went to the college the other day and said it just wasnt practical for him but the tutor she spoke to was very encouraging and showed them the electronics lab it would be ideal,he has an appointment with the tutor on 23rd june so we are hopeful something can be sorted. We are hoping he will be able to omit the more practical heavy machinery part of the engineering course and do the electronics instead.

Feel free to pm me if josef can use msn and ill give you Thomas' addy.
Hi
My name is Eunice, I am a mother of a 23 year old son who has Duchenne Muscular Dystrophy. R uses an electric wheelchair and uses a ventilator at night to help him breathe (which he also uses now during the day at times).

R has also had a spinal fusion operation on his scoliosis at the age of 13 - best thing he ever did - I think that is one of the things that is keeping him alive where a lot of his friends with the same condition have died.

I am a manifesting carrier of DMD which means that as well as being a carrier I also have symptoms of the condition (I use a walking stick and a disability scooter for distance)

My husband gave up work five years ago and is the main carer for both my son and I - I don't have the muscle strength to care for our son the way I used to.

I know how you feel with the worry of your children leaving school etc.

My son graduated last year from University with a 2:1 Honours degree in Computer Games Technology but cannot find a job - employers just see the wheelchair.

I am due to graduate from the same University in November with a BA Law with Distinction - I also am having difficulty in finding a job.

My son also spends a lot of time on MSN, Fecebook, Bebo etc. Thank goodness for computers or my son would go round the bend stuck in the house with his dad and I constantly as we are at the moment.

What is so difficult is that he had a taste of what a social life would be like when he was at Uni and its all been taken away now as social work only provide help to get him out of bed and a couple of showers a week and nothing else - we do everything else - including his physiotherapy which has now been withdrawn by the Health service because it is only available for rehabilitation and since he can't be cured they consider it a waste of time to provide it - despite the fact that if he didn't get the physio he would require expensive surgery to contractures - its so short sighted. They say 'the father has been shown how to do it' and that is that as far as they are concerned.

He is going to a Children's Hospice which he has been attending since he was 11 for 5 days respite in a few week's time (he'll be away for my birthday sadly). Although he is over 18 there is no other respite available.

He gets to go a few weekends a year and one 5 day period a year and tries to go when there are other people his age there (this is getting harder to do as a lot of his friends have died in the last 2 years). He enjoys it and has a good time and it gets him away from the boring parents!

Sorry this is so long. This is my very first post!

All the best
Eun
xx
Hi eun

nice to 'meet' you that is so sad and frustrating that your son can do so well educationally only to fail to get a job.

Have you heard of the TRANSITION team,I think there is now one in each area they deal with disabled kids(in our area they have a separate team purely for physical disabilities, no learning)

We have just discovered them, an OT comes out weekly to encourage our son to be more independent,they arrange social meetings with other disabled teenagers(they work with 14-35 age group!) They have their own SW who is going to organise voluntary work for my son. Perhaps there is a charity that could make use of your sons abilities.

Also you should really try for direct payments(this takes a while to set up) Your son would be entitled to an assistant for social activities He becomes the employer and chooses his own personal assistant,it all sounds wonderful, we are presently waiting to see if we are approved for 10 hours a week I have yet to see if it is as good as it sounds!

DP can be used ALONG with services like respite.

My son is very frightened by death and although he doesnt have a terminal diagnosis the nature of his conditions could be fatal.

I dont know how a young person copes with that hanging over their heads,right or wrong it is never discussed in our home.

I hope jugs son has recovered from his op I believe it was to be the 18th july but have not heard from them.

Best wishes
Eagle
We looked into accessing Direct Payments and the Independent Living Fund but the figures arrived at were around £150 a week short of what is needed.

The SW won't allow us to have DP's just for someone to take our son out, they say if we want DP's we have to take them for all his care needs or we can't get them.

R's care needs mean that he needs two workers for hoisting etc and there isnt enough money in the combined ILA/DP budget allowed to him for him to pay for the care he needs - therefore the majority of the work falls on his parents - us!

As I said - SW don't provide us with any respite whatsoever - it's a charity called CHAS (Children's Hospice Association Scotland) who provide the respite, which strictly speaking they shouldn't do as their remit is for children who have been diagnosed with conditions that mean they are not expected to live past the age of 18. They know that there is nothing else and that is why they allow R to go - plus he's done a few presentations etc for them to try and sort of pay them back (plus it keeps him occupied now that University is finished)

Whether you discuss a terminal diagnosis or not is really up to the individual family - there is no right or wrong - it's what feels best for that particular family.

We tried to be honest with R (he was diagnosed at the age of 6) but we only answered the questions as he asked them, tailored for his age at the time. What brought things fully out in the open for us was when R started High School and one of the friends on his transport died due to muscular dystrophy. R obviously knew that he has DMD himself and put two and two together.

What has been hardest for him is watching his friends die one after another (some younger than he is) - it gets he dreads the Hospice telephoning as he wonders whose turn it is now. There is no counselling or anything like that available to help him or us to cope - you just do what you think best - that is all any of parents can do really.

Its not something we talk about day in or day out as a family - obviously its always there in the background but if you let it rule your life you would go insane. There is a lot of living still to do and a lot of fun still to be had - maybe not the same things as we used to do (R used to love theme parks etc) but you find others and you adapt.

All the best
Eun
I think you should look into Direct Payments again.

My husband has just been accepted to have 10 hours direct payments a week, for someone to drive him to a social activity and back.

The whole point of Direct Payments was, I thought, to allow the person to deicde the best use of the money for their needs. There are strict limits, but my elder son, who has Downs Syndrome, can have them for respite care, and this can be used in whatever fashion he decides.He is hoping to go on a caravan holiday with his ILF support worker. We need to sort the paperwork out first, but Social Services have said yes, this would be fine.
Dear Lazydaisy

Our council are not keen on Direct Payments unless you take them for your full package of care so that they can then wash their hands of you

Our council's SW dept has been assessd as the 2nd worst in Scotland

ILF had offered for someone to take him out for a couple of hours once a fortnight but they will take £48 off him every time they take him out - we can't afford that as none of us are working and we get help with nothing (pay full council tax, no free prescriptions etc)

The £48 is made up of half the care component of the DLA and part of his Incapacity Benefit. He will then have to pay any entrance fees for himself and the worker, buy drinks etc - and we will still have to take him there and pick him up again (his powerchair is too big for the local accessible taxis) - so what's the point.

When R started at University the SW said that it was not in their remit to fund his care whilst at university, they also said it is no longer in their remit to fund access to a social life for him (they had supplied a worker free of charge for him to go out once a fortnight which they then withdrew without any assessment).

It is getting to the point that I am starting to wonder if their is actually anything at all that's in their remit. His Occupational therapy access and physiotherapy have also been withdrawn.

The attitude seems to be that if he can't be cured its a waste of their rescources spending money on him - I'm starting to wonder if it is Nulabour or the Nazi party that runs the UK.

Also when he was at Uni we had to take him there and pick him up again - my husband had collapsed with heart problems at that time (due to the stress of caring for both of us and working full time) so he then became available to transport R, as otherwise his dreams of University would have had to be shelved.

It all seems to be down to the postcode lotterry thing again I am afraid.
Regards