The following is an extract from an email I have sent this week to try and secure some help with respite and accommodation costs to allow some adaptations to our home. It’s not very dignified I know but I am so sick of people being judgemental this week that I wanted to try and give a little insight.
“Let me attempt to give you a little insight into our family life.
My son Andy will be 9 in May and my wife and I have strived and endeavoured to look after him to the best of our abilities. He is a beautiful, precious boy whom we love with all our heart and soul. He is also severely autistic with high support needs for every aspect of his care.His sleep is woefully inconsistent, his hyperactivity can be truly overwhelming. Although his toilet skills have improved he regularly smears excrement around our home and is up through the night running and whooping and stimming. Our carpets are beyond cleaning. Our curtains are pulled down. He has a whole host of sensory processing difficulties that affect his diet and bowel. He usually refuses to wear clothes or shoes. He has absolutely no sense of danger. He has a fixation with water and often has 3 or 4 long baths every day. Our heating is on all day every day and much of the night. Our fuel bills are astronomical. Our other two children have a very disrupted life and miss out on so much that is either not possible due to Andy’s needs or not affordable due to the fact that our ability to work is very limited. I am able to work only half a week while my wife gave up her work and career to look after Andy full time. She receives carer’s allowance for this. It is £60 PER WEEK! She is on duty 24/7. I receive nothing for my efforts. My oldest son was diagnosed with Tourette’s Syndrome last year. Very often I am unable to support him the way I would like. His condition is getting worse at least partly because at the moment he gets very little sleep. He mostly now sleeps downstairs on the settee. He is 10 years old. There are very few facilities for us locally and we are very isolated at times. The cost of a residential placement for our son would be more than £100,000 per year at a very conservative estimate. Our combined efforts save the tax payer and this authority a vast amount of money. We are tired of fighting for support that people in offices control and who have absolutely no idea what our lives are like. Our self esteem is very low and we seemed to be perceived as awkward people that are always looking for help. I could go on but perhaps this will help at least set some context for you.
In July last year we had a terrible experience when Andy managed to get out of our garden. One of my son’s friends had arrived and left a normally secure gate open for less than five minutes. That is all it took. Andy was out and away driven by powerful sensory seeking behaviours he made his way half naked and without shoes to the local supermarket. By the grace of god someone noticed him and police were able to pick him up. This incident marked, I believe a watershed in his development and subsequent care needs. We were in need of more support to continue. We only have one toilet and this is not suitable to meet our families needs with Andy constantly in the bath and we were attempting to toilet train also.We have been assessed as needing a downstairs walk in shower for the smearing issue and Andy’s tendency to dominate our bathroom. We also were assessed as being eligible for help dividing a bedroom to give our oldest son some peace and privacy. To also provide padding and some flooring for the walls and floor of Andy’s room as he tends to bounce off them quite a lot. These are not adaptations you would choose for your home, let me be clear about that. A padded room is kind of depressing, you know? They are to allow us to meet our son’s care needs and also the needs of ” affected others.”( David has a diagnosis and care needs in his own right also but without a social worker we have struggled to explore this fully.)
If successful in applying for a grant (and at the moment we are going through the rather humiliating process of deciding on an item by item basis what can and cannot be grant funded) we will be awarded 80 % funding. The 20% we are hoping to borrow from a relative depending on how much it is. These are costs incurred for the sole reason that we provide Andy’s care. Please try to hang on to that fact.
As I said earlier we feel that Andy’s care needs increased significantly around the time of him absconding from the garden. These things tend to creep up on you when you have little time to step back and reflect. Our support package has not changed in two or three years. We are getting older too alas and the stress and strain on us as parents is all the greater as Andy gets so much bigger.
We could do with at least one night off per week to recharge, catch up on sleep and perhaps do something “normal” with our other two children- like a meal out or the cinema- it is their childhood also and the emotional stress of letting them down is in itself very difficult. Everything is a fight however and we dread the assessment in April when bean counters with little or no insight decide on our quality of life for the next year. We also have a 14 hour a week D.P. package. We use this in a remarkably cost efficient way in lieu of any education input while giving us a little time off each day usually to wash urine saturated bedding and run our home. We have an exceptional and dedicated teacher/carer who implements Andy’s home development programme and is able to provide personal care and take him on community outings. She is such an important figure in his life and we are terrified of losing her with the talk of S.D.S. Overall I feel we do an exceptional job in a responsible and extremely cost efficient manner. We don’t look for praise however and that is just as well because personally I feel we are perceived as a major pain in the arse to this authority. (pardon my bluntness, I have little time or energy for etiquette these days).”
We are extremely grateful for the support we get just now and realise that we are fortunate in many ways. I hope by sharing this some people will be more understanding
and less quick to judge.