When you have a child of school age with Learning Disabilities and/or Autism you learn to fight, you learn to fight for their educational needs to met while you are meeting their hygiene, emotion, community access, family relationships financial, clothing, happiness needs.
When you have a child of school age with Learning Disabilities and/or Autism and they require residential school or college because of challenging behaviour you learn to fight hard, to fight multiple battles to ensure the holistic needs are met for your child. As their parent you are usually listened to, opinion taken into account, respected and valued.
When your child reaches the magical socially constructed ADULT age of 18 and they change to adult services everything changes. (Please remember that for the child their age related needs are related to capacity and understanding and intellectual age not how many years they have been on the earth). Suddenly as a parent you are seen as and called and written about as:
- Trouble maker
- Having too high expectations
- Never happy
- Always complaining
- Being an irritant
The list goes on and is all negative.
For some reason when your child enters adult services and needs to be supported by a private care provider you are expected to stop being Mum and Dad, take a back seat and maybe visit once a month or every other month for an hour, not ask to see care support records, not ask about medical situations, not have an opinion on leisure and social activities, and heaven forbid you take issue with the way your child is restrained, medicated, fed, or spoken to.
When you are in this situation, you don’t fight occasionally, for one thing, you are fighting every minute of every day to ensure your child is happy, healthy, growing, learning, experiencing a great quality of life and learning new independence skills and communication skills.
This constant fighting is exhausting and debilitating and takes away from physical, mental and emotional health. The parent is on edge all the time, dreading the call to say their child has self harmed, had a major meltdown, attacked someone, is being sectioned, is in hospital, or notice is being served on their placement. This state of constant fight or flight is real, it is all consuming and then the care providers and authorities complain when a parent flips over something seemingly trivial like clothes that are not clean, or food remnants round their child’s mouth or a missed dental appointment or pain relief not given for an obvious injury……. this seemingly trivial thing is the straw that breaks the parents back…… its not what they are broken about, its what broke them finally….
Many providers, local authorities, clinical commissioning groups, actively work to exclude parents from decision making, from safeguarding meetings, from Best Interest Meetings, from support plan writing, even from visiting their child.
If a provider and the authorities funding a placement truly have the best interest of the person they are supporting at heart then they have to enable, encourage and support the person to be part of their family first, part of the providers community second.
I accept there are occasions that a parent is the trigger for behaviours, a trigger for upset and the route of a problem….. this is something to be worked through as all families outside of ‘looked after’ do. Many neuro typical families fight, argue, get annoyed with each other, play off each other and have what others would deem as unhealthy relationships…. no one has the power to split them up, to ban them from seeing each other (outside of criminal behaviour). How dare providers and authorities feel they are above society, that they have power to decide who can and cant see each other, who can and cant have a relationship, when and where relationships are allowed.
There is no better resource, knowledge filled person to understand and share information on a person, than the people who have known them the longest, spent every waking minute thinking about them, caring for them, speaking up for them, supporting them, communicating with them.
Stop seeing parents as the enemy…. work with them… support them to continue with meaningful relationships with their adult child…. respect them…. value them….. IMAGINE BEING THEM.. put yourself in their shoes, imagine their journey and decide if you are being helpful or destructive to the continuance of that journey.
The professionals I have found to have the most compassion, understanding, care, knowledge and genuine interest in achieving great outcomes are the ones who are also carer’s themselves, with children or siblings with Learning Disabilities, Autism, physical disabilities, and challenging behaviour….. they are the ones who have been in our shoes and fighting the system they are a part of for their own loved ones.
So the answer to the title… The problem with Mothers and Fathers of adult children with Learning disabilities and/or autism is THEY STILL CARE, THEY STILL LOVE, THEY STILL WANT WHATS BEST FOR THEIR CHILD.
How Very Dare They!!