This afternoon I will be interviewed on RTE Radio 1 by Ray D’Arcy.
Myself and another Mum, who finds herself earlier in the journey of behaviour challenges from a child with Autism. Who like me loves her child and wants to do anything she can to stop the challenging behaviour escalating and finding herself in the position my family do.
Earlier this year, I wrote about the need for us all to ‘step out of line’ against a ‘system’ that is massively failing the most vulnerable children in our society. I believe true acceptance and inclusion cannot be achieved without honesty. Honesty creates and environment where people know the challenges and know how to help.
Today, I am stepping out of line in a way that exposes my family to attention that we do not want. A way that means, I have to potentially damage my future relationship with my son if he hears the interview in the years to come, where I will discuss the violence and trauma his challenging behaviour brings to our family as a whole.
I hope that if Patrick does hear it one day, that he knows I did it as a last resort after six years of trying to get support for him. That I did it to protect him and his sisters. That I did it to hopefully get comprehensive, professional help to support a beautiful, kind, loving little boy who is; confused, scared and so very sad about his challenges, a little boy that hurts himself badly because he is so upset by his own actions. Behaviour that he does not understand and has absolutely no control over. I hope he will know that I did it because of how much I love him and his sisters.
Apologies if I am causing your mascara to run, I don’t wear it anymore or I would spend too much time wiping it away. Honestly, I’m crying writing this, but that is okay because that is one of the reasons I write, to release the and make sense of the emotion I feel. I share it, in the hope it helps other people in similar situations and helps people to understand what this life is like and why professional support is so desperately needed.
So my top ten today is not for fun like it usually is. It is instead to ask you all to do your bit in improving life for families like ours by:
- Voting for change in the general election this weekend. I mean total change, not Fine Gael and not Fianna Fail who have been allowing, supporting and advocating for the harmful choices and policies made for the past 4 years. But, remember that any new Government won’t have a magic wand or an immediate fix. But this is the step on a pathway to a better Ireland, an Ireland we ALL deserve. Please vote for and with integrity,
- Grill potential candidates who are vying for your vote in the next few days and in all elections in the future. Ask them what practical changes they will make to support disability and mental health services. Ask them to follow up with you regularly – give them your email address.
- Contact your TD regularly, even if you did not vote for them. Their email address is first firstname.lastname@example.org. Ask them what practical changes they are making to support disability and mental health services. Demand they give back the €20million cut from disabilities budgets this week. Ask them to follow up with you regularly – give them your email address.
- Educate yourself – attend courses that parents of children with additional needs run for the general public, or ask them to run a coffee morning, information evening on how your school, community, church etc can support their family. Seek them out and educate yourself about their child’s differences.
- Talk to the children (and adults) in your life about differences, teach them how to interact with children who have special needs. Most importantly of all teach them that different is not less.
- Ask your employer about their inclusion policy and how they proactively employ and support a suitable working environment for people with Special Needs and Disabilities. This applies also to how school, sports clubs etc ask how they are demonstrating an inclusive environment? A truly inclusive environment, not tick in the box actions or lip service.
- Give practical help – if you see a parent struggling with a meltdown by a child or adult of any age, in an environment that may cause anxiety – a hospital appointment, doctors surgery, supermarket, play park, sports event anything. Pop over and just ask – can I help you in any way? Stand with their other children, mind their bags, and carry on helping them once it all calms down – because they will need a minute to recompose themselves.
- Commit to 24/7 – you will see various days, a month, events dedicated to supporting Autism, Down Syndrome, Anxiety – various different disabling conditions. Remember, that condition lasts longer than the event/awareness day and so should your awareness and support. That takes a real commitment from YOU. Dedicate one day a month as your ‘check in day’, check in in with yourself on what you have done to make life easier for a person with a disability.
- Be inclusive – it all starts with you! When you meet someone that has, or you suspect has, a disability, then treat them with respect and patience. This includes not eye rolling, pulling faces at your friends, calling the person weird, strange, an oddball. Call out the people that do this, silence is complicity (just ask Fianna Fail). If you see the person sitting alone at lunch, on the bus, at work then ask them would they like company. If they do, take an interest in them, if it’s a Autistic person, then it is likely they will have a special interest that they will want to talk about continuously. Listen, take an interest and be fine with the fact that the person may not take any interest in you. That’s part of acceptance.
- Ask questions – every person with a disability is as unique as every person without one, They have their own personality, likes, dislikes and then as part of their disability or difference, the person will also have specific needs in line with how their disability presents for them personally. Use the information you learn to make life easier for that person in any way possible – you would be surprised just how much of a difference small adjustments can make and how quickly you can and will adapt. You can actually make a truly positive difference in someone’s life!
As a bonus request, please don’t ever judge. Please don’t judge me for choosing to share very personal information today. Please don’t judge any parent or carer for what they do for the person they love, or how they do it, because trust me, we are already drowning in our own judgement, of our decisions, our parenting, pretty much everything we do!
Thank you for reading and please share this post.