A parents view of sharing their lives with a child/young adult with mild/moderate learning disabilities and Autism.
As editor of this website, these are my views after having spent time over the past weeks with parents who are living with broken dreams for their now adult children. Please take time to read about the struggles and difficulties they face and remember that this could have been your life, not by choice but purely by accident of birth. It is not intended to blame or shame any authority or organisation, I just want you to think about the parents and understand their daily reality.
So, the day has finally arrived and into your life comes the long-awaited bundle of joy. As humans, having hopes and dreams for the new addition are natural and boundless. Anything is a possibility on this wonderful day, doctor, teacher, scientist, musician or even a politician are among your hopes. The space on the mantlepiece is already marked out in readiness for the University graduation photo or the wedding day and subsequent grandchildren photos.
But what if those dreams never come true – when the dreams are actually shattered?
Because after only a matter of days, months or even years the diagnosis forces a rethink of hopes. The diagnosis is not an illness that can be recovered from – but a condition that is life-long, but not life threatening. Your child will age but remain childlike in their mind, may never attain verbal skills, so may never call you mummy and daddy!!
Sometimes the diagnosis never comes as doctors now think that they don’t want to label a child early in life with a ‘condition’ that they still struggle to understand themselves due to its wide parameters.
I have been fortunate that disability only encroached on my lifestyle with the ageing of parents. Today I spoke with parents who had disability enter their lives with the birth of their child and now, some of them, 50 years later still live and care for a disabled child. They as parents have aged, but their children – while ageing in body – remain in mind as helpless as a child in an adults body. Often larger and stronger than the carer. And what of the families with more than one disabled child, who were assured that lightening wouldn’t strike twice or a second child was born before the damage to the first was obvious and diagnosed.
Marriages have become strained or even failed under the immense strain of disabled children. There is rarely time to do things as a couple, as often a tag-team approach has to be used in order to shower or feed or spend time with other children. Also, what of the other children and their needs, always a juggling act to accommodate everyone. Other children can often feel isolated, the family unit utterly alone, isolated and cut off from rest of world. Because as a disabled child grows their own frustration grows and its not a terrible two’s tantrum anymore but a twenty-two-year-old melt-down as they invariably find our world confusing and frightening.
Disability is not always visible but it is ever present and living in defense mode and hyper-vigilance which all these parents are, can cause mental fatigue and post-traumatic stress symptoms similar to combat soldiers experience. The child may have medical needs and their personal care has to be managed and is the parent’s responsibility even when the child has physically grown.
A real worry is that the child has no perception of danger and yet we are urged to give them over to strangers for respite care. A stranger is looking after your child and your child cannot communicate what is happening to them. Sensationalised stories in the press of abuse of ‘children in care’ mean that while we desperately need the respite from caring, can we be sure of the substitute carer?
And, who will provide the respite? Who will decide the length of respite a parent is entitled to and who will pay for the private respite?
These adults cannot live alone, with no supervision, for various reasons but yet there is not a standard benefit their parents can claim on their behalf. What is the difference between a mute or a vocal brain damaged individual, that they should receive a different benefit. The brain in both is damaged, the perception impaired.
Every parent I have spoken to is a Warrior. They have to be! They didn’t choose to drink excessively, inject with drugs or smoke cannabis to make the world feel better, they gave birth to a damaged child either through hereditary, catastrophic birth failures or worst of all the unknown reason. The NHS is warning of the effects of drink and drugs on mental health and is making funds available for treatment.
But what are the provisions and funds for the unintentionally damaged? Often one parent has to stay at home to be a carer, meaning only one wage is keeping the house and bills paid. But caring for a brain damaged child or adult can be expensive. The extra heating costs alone can bring a family to its knees.
A family with a disabled child finds it easier to stay at home to avoid the bullying, the staring, the tutting, the ‘that child needs a good hiding’ brigade. There is no textbook provided for parenting a child with disabilities. They are left to navigate this journey without clear instructions. They fight battles for their kids to get them services, appointments, accommodations, understanding and when they fail, as they often do due to sheer exhaustion, they feel a little more hopeless. Yet the smallest progress in the child, maybe a few words vocabulary, the ability to fasten a button, recognise a shape or colour sparks intense pride and joy. Parents experience high highs and low lows.
When they reach school leaving age the child then becomes an adult. What then? Not for them the further education or job search. They cannot be left at home all day, they still need the stimulation that school interaction gave them. The place in a private day care has to be funded just as at Council run care facilities, and there are strict rules as to how many days they can receive funding.
The good day care provides activities and crafts, and are the job that these youngsters wish for but could never hope to achieve, the place to meet and form friendships with others who have disabilities. They want to go five days a week as we, who are able, go to work but they may only qualify for funding for three and a half days. This means the family have to raise the funds for the other day and half.
The private day facility lives in a constant state of fund-raising for craft supplies, outings, adapted vehicles, instruments, etc.
Here at Social Eyes they provide access to football, band, drama, outings, crafts, healthy eating preparation and lots of other activities, all of which require supplies.
Parents often wish that they could still hang out with their friends from before their child’s diagnosis. They miss the way things were. They would still like to be included and have friends, date nights, parties, casual hangouts and happy hours but that would make them feel guilty. Organising a sitter for a baby is difficult enough, what if the person needing a sitter is a thirty-year-old demanding adult with the stubborn mind-set of a five-year-old?
Parent isolation is very real and debilitating. If you know a family with a child with a disability, please don’t forget them.
written by Margaret Gregory.
Today the everyday reality of these young people and their lives is brought into sharp focus with the sad death of one of their group.
A very special lady and friend, you will be remembered dearly by all at Social eyes x