The Emotional Resilience I Need as a Parent of a Child With a Disability

I’ve been thinking a lot lately about my own emotional resilience. It is a constant work in progress for me personally.

We all get our strength from different places and there are times when we might feel nowhere close to resilient. Totally floored, out of energy and unable to cope.

Working out how I’ve built, and continue to build my resilience (which wavers regularly, I’m no super human I can tell you), has made me look at all areas of my life.

Nature and nurture definitely have something to do with how we cope in life. There are some studies that show children are genetically predisposed to being more or less resilient. I don’t know if I have that gene or not, but I do know I’m fortunate to come from a very loving family with parents who gave me many great tools along with the love and support I needed to go off into the world. Having my own children now, has shown me how vital they were to my life experiences, and how determined I am to give the same strength to my children. For me, this is especially important for my son, Freddie, who will face adversity all of his life, and for his siblings who will need to be resilient to cope with possible bullying, emotional needs and worries as they grow. I want them all to have happiness.

Life isn’t one big party though, is it? I put a lot of effort and energy into doing lots of very “normal” things, like seeing friends and family, booking the odd holiday, watching trash on TV and reading when I can. My diary is always jam packed. I was very clear from the start I didn’t want disability, Freddie’s disabilities, to define me or to define us as a family. Some days the image of who I was is hazy, but I’m still in there. We all are.

Ask yourself, what do you enjoy doing and what did you enjoy doing?

Disability is part of us but it isn’t everything we are.

It was while thinking about not allowing disability to define me that it suddenly dawned on me (I know this seems strange it hadn’t occurred to me earlier) that I have always lived with disability. My beloved Dad (who died in 2009 from Cancer) caught Polio when he was 5 years old. He had many years of struggle to get well, with all the love and support from my Grandma and Poppa, but it left him without the use of his left arm and muscle weakness in his legs. The reason it didn’t really occur to me is because he was never disabled to me. He was my Dad. He drove, did clay pigeon shooting, played golf, rode a bike, had a fantastic job and tons of friends. He lived life. He taught me to swim, ride a bike, he mentored me in my working life and was a loving Dad. His example of not letting it define him became a part of me. All without me knowing it.

When I was little, my Mum used to give me strategies to deal with the unwanted stares he would receive on holiday around the pool and the stupid comments and questions I might get from classmates and friends. One of the best was, “So, how does your Dad eat food?” Um, well, with a fork like everyone else! When strangers stared, I would smile and wave at them. I can remember doing this as young as 7 years old. It worked. They were on the back foot.

These experiences are ingrained in me and contribute to who I am today.

My other enormous support system is my hubby, Ollie. He has been with me through the absolute best and absolute worst times in my life. The fact we are celebrating 10 years of marriage this year and 16 years together is testament to how fantastic he is. We could so easily have lost it.

I watched my Dad die from cancer. I saw him take his last breath. It’s hard just typing those words, even now. When I think how I crumbled, literally to the floor, Ollie was there. That term people use so loosely these days, “I was heartbroken” over loosing a ring, crashing the car or missing a holiday became a reality for me. That pain is your heart breaking into a million pieces. The pain is like nothing else. I recovered over time and got through it with the support of Ollie, my Mum, family and good friends. I will never get over losing him and every anniversary is awful, but I can go day to day now.

Then I got pregnant (all planned, but still) thinking this would be a turning point. Something positive to focus on and put our energy into. Well, we were right but not for the reasons we thought. At my 20-week scan, we found out Freddie’s brain wasn’t developing correctly. No one, not even after all the horrendous tests we had, could tell us what this would mean for our baby or what the prognosis would be. I honestly thought I had experienced the worst thing I could and uncertainty and great sadness settled in again. I’m not totally sure how Ollie and I made it through, really. He told me a couple of years ago it was so bad in the early days after Freddie was born he thought we would be divorced before long. I wasn’t aware. I wasn’t in this world. I was totally lost for while there. We have worked extremely hard on our marriage.

 

We have no real control over how our children develop. Often, especially when your child has no definitive diagnosis for their disabilities, you often have no prognosis either. I have no control over how Freddie develops. I do everything I can, but I still don’t know. This is one of the things that can make me feel frightened. This became apparent when, as we were jogging along and he was making steady progress and I thought nothing could change now except moving in a positive direction, he started having absence seizures. Getting the call from his teacher and listening to her concerns, I fell apart all over again. I dusted myself down and started to use the emotional resilience I had built over time and started to work on it more.

Resilience is ever evolving. Part of the reason for this is the ebb and flow of life. Nothing stays totally the same forever, even when on the surface it seems like it does.

When you find out your child has a disability, the acute grief can be overwhelming. Just like it was when my dad died. Thats how I knew I was grieving. I had felt that pain before. Acceptance was next.

I built myself up with a support network, self-belief and self-study so I could have a strong emotional resilience, but it needs constant work. I read a lot of books around this subject and one I read recently which I would recommend is, “Option B” by Sheryl Sandberg. Although the author is focussing on her resilience after her husband dies suddenly, leaving her a widow with two small children, the themes were totally applicable to life with a disabled child. After all, you do experience grief in this situation, too. Not just at the beginning, but at different points throughout, like a wave crashing into the shaw and back again.

“You are not born with a fixed amount of resilience. Like a muscle, you can build it up, draw on it when you need it. In that process you will figure out who you really are — and you just might become the very best version of yourself.”  — Sheryl Sandberg, “Option B”

One of the best things to happen was that I found SWAN UK. As a member, I found so much support and I could ask anything at any time of day. It had such an incredible impact on me, I took on the role of Parent Representative for my area. Online support groups can provide a different dimension to your support network. This can be especially important if you are caring alone or don’t have any family to help out.

I used to have a desperate deadline of getting Freddie walking and talking by age 5. You are always told the brain is most plastic during these formative years. The grief came over me again when he couldn’t say anything other than “Hiya.” I was, however, ecstatic he was able to walk with his kaywalker and he was no longer the only child in his class still crawling.

My timelines had to change.

Perseverance is key to building resilience.

I also learned a lot more about Neuro-Plasticity. Yes, the majority of change happens at a young age, but the brain continues to build new pathways all of your life. We still have time. He is proving that every day.

When talking about emotional resilience, you often come across the three Ps: personalization, pervasiveness and permanence.

These 3 Ps are areas I work on, building my resilience as I go.

Personalization

I always felt guilty. I was convinced that Freddie’s disabilities were my fault, even when we received his diagnosis. It has taken me a long time of removing the guilt around this. Feeling something is your fault is different to taking responsibility for your actions though. Don’t confuse the two. Taking responsibility is key to change and growth. Feeling guilt and assuming fault prevents forward movement and acceptance.

Pervasiveness

This is a state of feeling/thinking that this one event will spread to every area of your life. This is the area I had to, and still have to work on, not to let Freddie’s disabilities totally define my life or that of my family. Don’t loose yourself.

Permanence

Believing that one situation, one event, one state is forever is mentally debilitating. As a race, we are built to be constantly moving forward. In the early days I used to sob and say, “This is it now, the life of a carer. What if he can never do anything for himself. What if he never walks or talks etc. I will be like this forever.” It is true Freddie will be disabled all his life, but there are still changes. Change is key to the reason we need to practice building our emotional resilience as we go.

Follow this journey at Aimee Mann Mentoring

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Thinkstock image by Tishchenko