IDENTIFYING AS A CARER: IT’S OK NOT TO BE OK. IT’S OK TO ASK FOR HELP.
Where we were when our son was diagnosed with autism
It was 2015.
I had three children under seven, my son recently diagnosed with autism.
He’d left school, two schools actually. We’d taken him out as school couldn’t cope, he couldn’t cope and when he couldn’t comply with teachers’ expectations, sometimes he’d lash out and hit them. We’d had a couple of months of him at home and pretty angry.
A friend told us about a home based programme to meet his needs more effectively. It was based on love and acceptance which was exactly what I’d told his head teacher he needed. We learnt to focus on helping him communicate and manage socially.
It fanned the flames of our hope, and shared a deep belief in our autistic child and his ability to grow socially. We felt bolder and able to hope for his future after initial training in the Son Rise programme®.
This was a refreshing change, as professional after professional had given us damning predictions.
One memorable example: an improbable young-looking occupational therapist believed our child could never develop the ability to see things from someone else’s point of view. “Theory of Mind”, she called it. Impossible for autistic children. After leaving that meeting, I remember thinking ‘hang on, our boy loves practical jokes: the joke doesn’t work if the person about to get soaked knows there’s a bucket balanced on the door!’
Colm always felt super connected to animals
Relief and renewed hope
So, we’d decided against buying into such doom-laden prognoses, things were easier, in some ways, since school. We were in charge now.
The diagnosis was a relief: we knew what we were dealing with and what to look for help with. We no longer spent hours on the sofa each night discussing how to convince his class teacher/ head how best to work with our child.
Why is it still challenging?!
Nevertheless, I was on my knees a LOT of the time. It was tiring one to one all day with our autistic boy. And balancing my needs and the needs of two younger children, who he sometimes hurt. That’s not a fun position to be in as a mum.
He was angry from his experience of school, and he resented anyone coming to the house and taking my attention away from him. Any transition was a big deal: moving from house to car could take hours. Our two younger children needed us too. We wanted time as a couple when we weren’t exhausted every single evening.
He often found trips away from home were unpredictable and hard
A new way of communicating with our son
We knew we’d found a great way to help our son. We could see him softening, becoming less frustrated and more open to new ideas, more interactive for longer periods. We focused on his motivations and were super user-friendly. We modelled the social skills we wanted him to learn and celebrated him for his improving eye contact, when he asked personal questions and took turns.
I’d made close friendships with other parents working in this way with their children. But, they were scattered around the world, not available for coffee and a hug.
Trying to go it alone
The thing I hadn’t learnt to do was ask for support when I was struggling, or even make use of the online autism community.
I didn’t know there was a local one back then. Previous times when my husband or I floundered, the other would step in to help. This time we were both finding it really hard. We were aware this was a marathon team effort: and we were only 2!
It takes a big, useful village to raise an autistic child!! We were two novices, cutting our teeth, painfully all day, every day, outside the school system. Trying, failing, seeing small steps forward, searching for patterns, clues, stumbling, not knowing how to resource ourselves and still too proud and just plain tired to ask for help, or a break.
We followed his fishing motivation!
How asking for help helped me
Walking in Radstock, my nearest town, from the library to my car, I decided one day to knock on the Carer’s Centre door. Close to tears, I said “I don’t know if I’m a carer, but I am if home educating my autistic son counts”.
The receptionist reassured me and had me fill in a form. I availed of sessions with a peer mentor, a blissful day retreat and 10 weeks of free counselling. I had employment coaching and our two younger children have also really enjoyed outings with Young Carers. All of these inputs helped me find the inner strength to keep going for the long haul.
Our training
We did advanced Son Rise training, recruited and trained volunteers to help us run our programme and give our son variety and challenge beyond just his parents.
We invested in our own growth to show him growth is possible. We modelled flexibility to encourage him to be flexible. We delighted in him to encourage him to delight in the social world as well as his special interests.
Ross, his dad, doing a mud run fundraiser to Colm’s Son Rise (R) Programme!
Who I thought carers were
I share this story because until that day, I thought of carers mostly as spouses of those with degenerative illnesses, probably over 60. I expanded my definition of carers to include me, I got over my reluctance to reach out and I asked for help.
I decided to talk to friendly, professional people, who’d been in a similar situation or whose job it was to listen. Most importantly, I took time for myself.
This can be hard for any parent to carve out. Parents of children with special needs have many additional squeezes on their time and energy.
What’s changed for him?
Our son now attends mainstream secondary school and is studying for his GCSEs. He transitioned from full time Son Rise at home, to tutors at home to catch up in core subjects, to part time school, and finally full time school. We chose a local secondary with an exceptional SEN department; they have helped him through some behaviour challenges and continue to believe in him.
He’s come a long way, and we have as a family.
Trips away from home and with friends gradually became so much easier.
What I changed for me
Over the next four years, I retrained as a counsellor and got accredited as a coach.
I specialise in supporting parents of autistic children. I have walked that path and continue to do so: the solidarity makes a huge difference to my clients. Some parents’ children are anxious, some are adopted. I will keep faith in our son and his potential as long as I breathe. And I’ll fan the flames of your hope for your child. Even when it feels like a flicker or an ember.
There are times we still have challenging moments. It used to be days and weeks, especially in the school holidays. Our boy is affectionate and helpful, mad about Minecraft and has a group of friends.
I’ve created what I wish I’d had in those early years post diagnosis
I host a free Facebook group for parents of autistic children to be surrounded by solidarity and support.
I’ve created tailormade programmes for parents at different stages. You might want to focus on meeting your emotional needs which sometimes include grief for the child they thought they’d have, If you, or someone you know is parenting an autistic child - get in touch.
We don’t have to do this alone. Sessions are 50 minutes long and confidential.
I was massively supported by the Carers’ Centre, Son Rise training and Dialogue counselling when things were really hard. Their help was really important in getting me to the point of being able to help others.
How my support helps
I offer a unique combination of autism and self-care coaching and counselling. We can learn all the autism connection techniques in the world but if we’re on our knees, we’ll have no energy to put them into practice!
That’s why we start with simple self-care that fits into your life.
I listen and ask questions without judgment.
This helps people find their own wisdom, make a plan that will work in their life. Where there’s a short cut to smoother communication, I’ll train you.
We’ll work on setting boundaries with love, friendships and sibling relationships, following our child’s motivations and more.
Clients say they feel calmer, clearer and more able to help their child manage social stuff and those unexpected changes.
Hit the email button if you want to hear how it could help you and your family.