Caring disabled son

Hi, My name is Emma and i have a son called Calum. He is 12 years old and has learning difficulties, he goes to a a fabulous special needs school. Calum finds it difficult to keep himself occupied outside of school. He find weekends difficult and we dread the long school holidays. Really struggeling now for a long time to get any practical support; help for ourselves as a family in caring for calum on a 24 hour basis and help for Calum and his own day to day wellbeing. Were told by social services he is too good for Barnardo’s and we have just been refused application for direct payments. Seems very, very little option for a child like Calum. Social services want him to access the mainstream out of school child activities with 1:1 support. However, Calum has very few typical childhood interests. He likes being outside, likes theatre shows, music and dance, going to cafe’s and much prefers adult company, he has little interest in his peers. He has very poor balance and fine motor control and dislikes most sports. He does go to disability swimming but mostly enjoys this because of the 1:1 interaction with an instructor and not the swimming itself. He cannot work a remote control, and cannot use any technology etc, he cannot read or write and can only draw scribbles. He has fixations on people and these become intensified at the weekends and in the holiday period. He spends his free time sat in the garden watching and talking to the neighbours. This is where most of his fixations on people develop. He also watches TV, the same sitcoms again and again. Sometimes he will wash the car or clean the windows and he likes to squirt passer byes with his water gun. His behaviour can be really challenging at times and is much harder to manage at the weekends and school holiday period. He can have aggressive outbursts, be over sexulised and hug inappropriately. As he is getting older, he is getting much harder to manage. Myself and my husband feel really isolated and unsupported. Trying to keep work going is a real battle. it seems as if there is literally nothing for Calum to access or do outside of school and no respite, help or support for us as a family.

Welcome to the forum. My son was brain damaged at birth, fit as a flea, but still unable to read, write or do any maths. Horrendously hyperactive as a child. Everyone else seem to look forward to summer holidays, I absolutely dreaded them!

Social Services should be providing the support you need to keep working, so ask for a Carers Assessment for you, and a Needs Assessment for your son.

Is he a day pupil, or boarder at school? What do other parents do?

I know he’s only 12, but you need to start looking at long term care arrangements now, because they can takes ages to arrange. Do NOT rule anything out, have a look at all the provision you can, and try to think what would suit him best when you are no longer around to support it. Think of it like a maze, there will be a lot of dead ends before you find the best possible provision.

My health in ruins, my son became a boarder at his school, then went to what is now Fairfield Opportunity College, then to residential care, before moving into a flat some years later.

Hopefully you are claiming DLA for your son? Have been told about The Family Fund?

Hi Emma, I know from experience how difficult it is to find out of school activities…are there any inclusive theatre projects in your area, also my daughter really enjoys going to a Riding for the Disabled stables.
Also, joining a rambling group as a family?
I hope you find something that your son enjoys… thats all we want for them isn’t it.
Take care of yourself.

Hi Emma,
Are there any play schemes and Saturday clubs in your area for children with Special Needs; run by Mencap, Crossroads, YMCA, other special schools or charities. Your son’s school may be able to advise. They aren’t often well advertised. The best source of such information is often other parents.

If your son loves being outside, he may enjoy attending a m/s forest school with 1:1 support. An inclusive drama group sounds like a great idea, too. If he loves 1:1 attention he may well enjoy attending m/s clubs, even though he’d spend mist of his time just chatting yo the 1:1. At least it’d give you and him a break from each other.

I’m not really sure why they’d prefer him to attend a m/s club with 1:1 support instead of having DP, surely the cost would be the same? Dud they give reasons?