Carers Week special: mums, dads write from the heart
National Carers Week (October 15-21) sets out to recognise and celebrate the outstanding contribution of carers.
Amaze is well aware of the extraordinary work done by carers in our community, so we thought it an appropriate time to share some insights from people who are carers, or rely heavily on carers, in their daily lives.
Jodie Eaton: I Will Care For Them to the Best of My Ability Until The Day I Die.
I didn’t choose to be a carer and, if I am honest and I had a choice, it wasn’t on my list of dream jobs when I was younger. However, when you have a child or children with disabilities, you become a carer by default.
Parents like me have no choice in it; it is something that we become instinctively and quite rightly so, as they are our children. I brought them into this world and I will care for them to the best of my ability until the day I die.
When I speak of being a carer, I do not mean the normal things that each and every parent does day in and day out. I mean duties above and beyond those. I am a full-time advocate, fighting battles with teachers and the local authority over my child’s right to a suitable education.
When necessary, I battle for hospital appointments and assessments with the relevant clinicians, taking notes on everything.
I track dates, make follow-up appointments, submit paperwork on time and keep a diary of important dates.There are dates for everything — I’ve learned to juggle my calendar with military precision.
Families like mine reach their breaking point and risk simply falling apart. Friendships and relationships have diminished before my eyes because I’ve lost sense of whom I truly am.
And all too often, due to the enormous stress and physical strain that we are under daily, we have our own health issues to contend with. I’ve been diagnosed with several conditions that are triggered by extreme stress. Who will look after me if I end up disabled? Who will look after my children? Will they be taken into care because I can’t fulfil my duty as a parent, let alone a carer? I worry about everything. What if I end up depressed and unable to care for any one?
I am exhausted. Sometimes it’s even too much effort to take a simple bath or shower. We fit in more than 24 hours’ worth of work into a day, and our shift never ends.
Isn’t it about time that “The Forgotten Carers” aren’t forgotten anymore?
Until that time comes, of course I will continue to go above and beyond. I will continue to push my broken body through ridiculous obstacles and I will continue to care and love my children unconditionally.
Miriam Gwynne: Autism Parents, We Have So Much In Common
There is a famous quote by C.S. Lewis that says, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.’”
As a parent to two children with autism, I often think I am alone, struggling with things that I think nobody else would understand. And then I meet another autism parent, and another, and it seems we have so much in common.
Here are five things I have found that every autism parent understands whether your child can speak or not, whether they have learning difficulties or not, whether they are now adults or still in nappies. If you know these five things, know this too: You are not alone!
*1: The Look
You know the ones where every eye is on you and your child because they are acting differently? Whether they are flapping, spinning, screaming, humming, rolling on the floor, or running away, autism parents know that look well. The look of judgment, curiosity, condemnation and contempt. Sometimes, it is a solitary look; other times it is all-consuming and you can feel their eyes staring right through you.
We are raising unique, smart, wonderful children that are too often misunderstood. Hold your head high, autism parents, and keep walking. It’s stressful, but it gets easier!
*2. The Exhaustion
Even if you are blessed with a child who sleeps (which isn’t that common with autism), we all know the exhaustion. The appointments, the therapies and the constant need to interpret the world on your child’s behalf takes it out of you. Exhaustion causes so many of us to struggle with health problems—both physical and mental—and forget the most basic of things. Sleep deprivation and stress can make the most intelligent autism parent forget how to spell the simplest of words on a vital form. Be kind to yourself. You are raising an energetic and spirited child who will change the world; but right now they’re zapping your energy. We have all been there!
*3. The Fight
I have yet to meet a parent who has had their child diagnosed quickly and easily, had every service they require to make their child the best they can be given freely and plentifully, or had full support in education from day one. Maybe there are some out there, but it is rare to find.
From the moment we suspect our children are struggling, we enter a fight: a fight for therapy, a fight to be listened to, a fight for the best education for our children. We fill in forms just to have things declined by people who have never met our child and, as if this was not bad enough, we then have to fight a society that still views autism as “Naughty Child Syndrome” or “made up.” If we complain, we are seen as troublemakers; if we call too often, we are pushy; and if we write about our children on social media, we are either over-sharing or attention-seeking! It makes no difference what age your child is or what ability they have, one thing I have found in common is the fact we all seem to have to fight at some point.
*4. The Constant Vigilance
When you have a child or adult who struggles with communication, be they verbal or not, it is a guarantee they will need more support and supervision than others. When your child has no awareness of danger and is vulnerable, you have to be always vigilant. Even when they are out at school or with carers, that vigilance never eases. We have to be aware of where they are and who they are with always because we have children and adults who are easily confused and anxious.
*5. The Worry
The worry is always there. Worry about change and how it will affect them; worry about political issues that could affect future benefits; worry about what will happen when we die; worry about whether they will ever be accepted and understood. Before they start their education, we worry about teachers and friends, and then as they get older, we worry about jobs and relationships.
Yes, all parents worry about their children, but we have so much more to think about. Nothing is taken for granted when your child has autism. Friendships are confusing and stressful, language is a mystery, and repetitive movements are misunderstood and mocked. We are raising babies the world finds fascinating yet exposed, interesting yet misunderstood.
We have reason to worry. Yet, we also have reason to be at peace. There are teachers who will care, assistants who will go that extra mile and employers who are ethical.
Stay positive. Together, we can help make the world a better place for all our children.
Rob Gorski: Living Day to Day, Minute to Minute
Life for my family is a daily struggle. My wife, Lizze, is chronically ill, so in order to take care of my family, I’ve become a stay-at-home-dad. This change has required tremendous sacrifice, especially to our financial security.
We often live day to day, sometimes even minute to minute. There’s literally no planning for the future because we never know what the next hour will bring our way.
That being said, our journey is not without reward.
We’ve learned to appreciate the little things and to celebrate all victories. Being a special needs parent has definitely changed my perspective on a great many things.
One of the biggest things I’ve learned is just how profoundly dynamic autism is. By its very nature, autism is a spectrum disorder and that means that while two people can be diagnosed with autism, their symptoms can and very often will be, completely different. All three of our boys were diagnosed with autism and all three are very different from each other. They each have a unique personality and their own set of likes and dislikes. They are developmentally unique as well.
Our oldest son, Gavin, was diagnosed with Asperger’s syndrome in 2005. He’s an unusual case for many reasons, but in regard to autism, he regressed by the age of 4.
Gavin’s development was normal until late into his third year. It was as if we put him to bed as one person and he woke up a stranger. He was disconnected from us.
We had to learn who he was again and build a new life around his now special needs.
All too often people make assumptions or succumb to stereotypes about autism spectrum disorder. My wish: That people understand that every person with autism is absolutely original.
Julie Jones: This Is What I Wish I Could Tell My Son’s Caregivers
Dear Carer, Teacher, Support Worker,
I wanted to write to you because I feel there has been a misunderstanding. You see, as the mother of a son with a disability, I want the best for him. This is often mistaken for being demanding and I am sure, on occasion, difficult.
If you have a son, daughter, parent or loved one, I imagine you want the best for them. It is what we all want for the people we love. We are protective and sensitive about the people we care for.
It is what loving someone is all about.
It may seem I expect a lot of you, but what you don’t know is how hard I am on myself.
As a parent, I never feel I am doing enough. We have spent a long time helping our son gain the skills he now has. Milestones have taken lots of work on his part and lots of determination from everyone involved in his life.
He sat just before his second birthday, learned to bottom shuffle at three and spent his first five years doing intensive therapy.
I know that we are lucky. Not everyone has the progress that he has experienced and we celebrate every one of these achievements.
As a parent, I crave communication with my child, to know what he has done during the day.
But because he is nonverbal, I am often dependent on you to share information to bridge the void.
This is something I highly value. As humans, so much of our relationships with partners, family and friends is dependent on communication.
I just ask you to remember this and realise that the snippets about his day you provide are a window into his life when he isn’t with me.
I am so appreciative of the many people who care for my son.
Over the years, so many of you have made his days happier, more fulfilling by being a part of his life, and I thank you for your dedication.
You have contributed to his gains and shown patience and kindness. You’ve made my day by sharing a new skill he has learned, a funny story or a touching moment.
A loving mother.