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This week I am going to be talking about anxiety and self care. This is such an important topic for all humans but in my opinion, it’s absolutely vital for those of us in the role of parent/carer. It’s vital to understand its role and how to make a positive impact for yourself. When you have a child, or children, with Special Needs and disabilities, your health and well being tends to take a back seat. I know from personal experience. I’ve been right to the bottom, at breaking point and made my way back up again.

We all get our strength from different places and there are times when we feel nowhere close to resilient. Totally floored, out of energy and unable to cope. Sometimes this can present itself as depression, overwhelm or anxiety. The worst case scenarios are panic attacks or perhaps suicidal feelings. I have first hand experience of depression, panic attacks and my physical health being seriously negatively impacted by stress.   

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. I’m going to share my top tips to helping yourself along the path when anxiety strikes and quick wins to building your emotional resilience.

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 lucky, I 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 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 that 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.

Sometimes you have to Ask yourself: What do you enjoy doing and what did you enjoy doing?

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

It was whilst 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) but 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 never was 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!!!!!! As an adult, I can see now that often those questions werent meant to hurt me they were just simple ‘say it as you see it’ questions form an intrigued children. When strangers stared I would smile and wave at them. I can remember doing this as young as 7 years old. And 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 (which I’m acutely aware isn’t there for all of us) is my husband, Ollie. He has been with me through the absolute best and absolute worst times in my life. The fact we’ve been together 18 years and married for 12 is testament to how fantastic he is. We could so easily have lost it all.

I watched my Dad die from cancer. I saw him take his last breath. It’s hard just saying those words, even now. When I think how I crumbled, literally to the floor, he was there. That term people use so loosely these days, ‘I was heartbroken’ over losing a ring, crashing the car, missing a holiday etc became a reality for me. That pain really is your actual 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, wham, I get pregnant (all planned but still) and we think this will 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 that 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 now there was uncertainty and great sadness again. I’m not totally sure how Ollie and I made it through really. He told me a couple of years ago that it was so bad in the early days, after Freddie was born, that 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 and thankfully it is like this most of the time now.

In the workshops I run about Getting Your Voice Heard, we cover techniques to help build confidence again and take back some control over the situation. The workshop focuses on all the meetings and appointments we have to attend with medical and educational professionals. Some of these same techniques run through building up your emotional resilience as well.

We have no real control over how our children develop. Often, especially when your child has no definitive diagnosis for their disabilities/SN 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 so frightened. This became apparent when, as we were jogging along and he was making steady progress and I think nothing can change now apart from in a positive way, he starts 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 utilise 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 is disabled/has special needs, the acute grief can be overwhelming. Just like it was when my Dad died. That’s how I knew I was grieving. I had felt that pain before. Anger, sadness, hope and finally acceptance were next.

I built myself up with a support network, self belief and self study to have a strong emotional resilience but it needs constant work. I read a lot of books around this subject and one which which I would recommend you do to 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 running through 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 to me was finding 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 is exactly the reason I am developing the Members community within my website aimeemannmentoring.com, it’s the reason I have a secret group for ongoing support for anyone who attends a live or online workshop and the reason I run the closed Facebook group, CEO of My Special Needs Family. Support and online support can be especially important if you are caring alone or don’t have any family to help out. Finding your tribe and a community which makes you feel empowered is essential.

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 started in reception and he still couldn’t say anything other than ‘Hiya’. I was however ecstatic that he was able to walk with his kaywalker and that he was no longer the only child in his class still crawling.

My time lines had to change. Perseverance is key to building resilience. I also learnt 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 everyday.

When talking about emotional resilience, you often come across the 3 Ps. Personalisation, Pervasiveness and Permenance. These 3 Ps are areas I work on, building my resilience as I go.

I’ll share a little of my experience with the three P’s.

Personalisation

I always felt guilty. I was convinced that Freddies disabilities were my fault, even when we received his diagnosis. It has been a long road for me, 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 lose 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 that Freddie will be disabled and have SN forever but the situation changes. The fact that it changes is key to the reason we need to practice building our emotional resilience as we go.

Having experienced, depression, anxiety, panic attacks and poor physical health due to stress, I want to share some quick wins that worked and continue to work for me, in the hope you can use them too, to keep yourself going, keep anxiety at bay and build your resilience.

Anxiety Is A Force To Be Reckoned With.

Anxiety is a force to be reckoned with but you can challenge your thoughts with a few coping mechanisms when you feel yourself getting anxious. Ask yourself these questions (not too many otherwise it will have the opposite of the desired effect) and answer quickly.  They are designed to test your reality.

  1. Is my fear based on reality or worry/fear of the unknown?
  2. Is there proof? (of the thing I’m worried about)
  3. What is the story I am creating?

Answer with definitive answers like ‘I have no proof’ ‘It hasn’t happened yet so it is currently a story I am telling myself’ or ‘I am safe’.

The answers are not what you FEEL or THINK but they are based on what evidence  you have. Coming back to reality, back to the present moment can help if you catch yourself in time.

Calm your breathing and focus.

When it comes to building your resilience emotionally, it’s worth writing a list of all the things which could help you. These things include, what makes you feel like you? Is it baking, reading or painting or do you love martial arts or skydiving? What food do you like to eat?

Making a list of things to improve your well being is the start. You shouldn’t expect to tick them all off the list in a week. My list took about four years and is ever evolving.

Do you eat for fuel? When you are in a state of overwhelm or stress you need fuel. Did you used to read but never seem to have the time now? Just 5 minutes a day, away from screens and into another world does so much good. You should include time outside in the fresh air. Physical exercise is key. That was the last one i ticked off. I bought a pair of trainers and started running. I’m still really slow and probably run like phoebe from Friends from I’m out there doing it and I feel so much better for it. My muscular tension headaches have reduced, My jeans got a bit smaller, yay, and I tend to have more energy. The options are endless but taking just one thing or activity at a time, for you, and building it into your life can make a huge impact.

I have an Emotional Resilience, live workshop, coming up in April. Launching in the Solihull area (UK) for the first time. I’ll pop a link to the event should you want to join us. It’s happening on April 3rd, that’s 2019 if you are listening in the future. Click here to check out my upcoming events.

I could honestly talk about this topic for hours. There are so many options to to get yourself going and to make a change. It requires thought and doing things intentionally but it can and does work.

Thanks for listening to the CEO of My Special Needs Family Podcast.

Catch you next time.

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