Category: Mentoring

Emotional Resilience. The Ebb And Flow of a Special Needs Parent

I’ve been thinking a lot lately about my own emotional resilience. Partly because it is something that comes up regularly at our workshops, partly because its the topic of the next in the series of workshops I have been writing and partly because it is a constant work in progress for me personally.

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.

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 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.

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) 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 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 class mates 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 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, he was there. That term people use so loosely these days, ‘I was heartbroken’ over loosing 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 loosing 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 focusses 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. Thats how I knew I was grieving. I had felt that pain before. Acceptance was next.

I built myself up with the 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 I read recently 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 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 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 always felt guilty. I was convinced that Freddies disabilities were my fault, even when we received his diagnosis. It has been a long 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.


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.


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.

There is a lot more to this resilience malarky and I will cover more strategies in the workshops and share more on the blog over time.

Workshops focussing on Building Your Emotional Resilience will be starting in September this year and I would love to have you join us. You can find me on my Facebook Page or you can email me at



If you purchase anything via the links with Amazon in my blog posts, I receive a small commission at NO added cost to you. This just helps me a little to maintain the website and continue to provide useful and empowering resources for parents and carers of children with special needs and disabilities. Thank you. x

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My Tips To Help You Mentally Prepare for The Summer Holidays

The Summer holidays are almost upon us, or are already here for some of us. 6-8 long weeks stretching ahead. The thought of half term and especially the summer break can often feel so overwhelming and fill us with dread. Made especially challenging if you have a disabled child or like me a disabled child and two younger siblings. Eek.

The Summer Break Can Feel So Overwhelming

The methods I use to get into a positive state and to plan for meetings with Freddie’s medical and educational professionals are methods I employ to see me through the long summer break. I wanted to share some of those tips with you in the hope it might help ease some of the anxiety.


The first thing I do, in advance, is get planning. I enlist the help of the grandparents and take advantage of some ad-hoc sessions at nursery/preschool for the younger two. (What will I do when they are to old to go?) I chat to my friends and see who is around and book a few ‘play dates’ or coffee dates in. I know for many, there isn’t any family support close by and even getting out of the house can be a challenge but perhaps you have a local network of friends you could tap in to. Talking with your online network of friends is key as well but meeting in the flesh is really important if you can.

I make a list of all the free places and not too expensive places we could go to that are accessible enough for Freddie.

Each week I plan the following weeks meals using a family meal planner and I order everything I need online. It might seem boring but it saves masses of time and stress. One of the most annoying things for me is when I haven’t pre-planned what we are eating. I get to 4pm and the panic is on. The children are fractious and there is nothing but good old beans on toast for dinner, if we are lucky.

Food is Fuel

It is really important, of course, to feed our children healthy nutritious food, along with the odd ice-cream and lolly pop but it is also really important for us as parents and carers. At times like this, our energy levels are often very low. When Jago was a baby, I hadn’t got so far as to being this well organised. I was feeding him myself and all three were in nappies. It was total chaos and I was suffering from a sever lack of sleep every day. I was on my knees both physically and mentally by the end of the summer break. I knew I couldn’t be in that state again. So here are My Top Foods for Fuel.

Getting Organised

Getting organised is the key to making it work for me. Sounds obvious but I get all the children’s clothes out ready the night before and if we are going out, I pack the bag or the car the night before too. I’m still generally always a bit late but if I didn’t do this I would never get anywhere. Another great tool you can use is a space saving hanger. Plan out 6 days worth of outfits for your children and hang them all ready to go for the week ahead. This generally also ensures I have done one of the most boring tasks known to man before its too late, the clothes washing.

My Daily Ritual

Mental preparation is just as important as physical preparation. Each morning, if I can wake up before one of my children does, I spend just 15 minutes getting my head together. It helps set me up for the day and stay on top of the stress levels. Even if you do this at another point in the day, 15 minutes should be an achievable amount of time for everyone. I do still end up loosing my sh%t at times and I’m sure my neighbours think there is a fish wife living at our house between the hours of 5pm-7pm some evenings.

I stretch because my body gets so stiff with lifting and stress.

I ask myself “What 3 things am I grateful for today?” This is a quick one but it’s a perspective check. This year I learned that a girl I went to school with, 2 years younger than me, died from lung cancer. She was bright, inspirational and lovely and had so much to live for.

Each day, I am grateful to be alive.

Today, I’m also grateful for the memory of the few days respite we had recently with the sound of the waves and the heat of the sun. A little time to recharge.

When you are focusing on being grateful, it’s very difficult to be angry or frustrated at exactly the same time. So, if I’m feeling this way, I take a moment and focus on what’s great about today. It doesn’t have to be anything big, it might be that the sun is shining or you have got an hour out to yourself or your children have actually eaten all their breakfast without moaning.

What are you grateful for today?

It’s a buzz word but Mindfulness really works for me, even if I only have 3 minutes to spare rather than 10. If it’s all getting too much during the day and I can shut myself in the loo for 2 minutes to practice Mindfulness it helps to calm me. I use the Headspace App and it works really well. It takes a little practice but it is worth it. You can listen to the Founder of Headspace, Andy Puddicombe, talking about it on his TED talk.

I also try to approach each day in sections. The first section is all about getting up and ready for the day then next is the morning, then lunch time, the afternoon, tea time and bed time and then (Gin or Prosecco) the evening. If I think of it as a whole day or week stretching out ahead of me its just too much.

“His way of coping with the days was to think of activities as units of time, each unit consisting of about thirty minutes. Whole hours, he found, were more intimidating, and most things one could do in a day took half an hour.” Nick Hornby, About A Boy. 


Be Kind To Yourself

We also have a dog who needs walking. I try my best to take him out on my own, even if it means getting up a bit earlier before hubby goes to work. Not everyone has a dog and not everyone has a partner to share the load. If you can, during the day especially if it is hard to get out, try to take even just two opportunities to perhaps sit outside in the fresh air and drink a hot cup of tea or a cold drink. If you can’t physically get out, sit by an open windows and take a breath. The outdoors and fresh air is vital to mental health and a positive attitude so find a way that works for you.

If it has been a nightmare couple of hours and the children have been having a strop, once it has stopped try to let it go. It is in the past now. Perhaps a few minutes of Mindfulness and then focus on the present moment. It is easier  said than done, it takes practice and believe me, it doesn’t always work but it will at times.

Good luck for the holidays everyone. Enjoy all the moments you can.



If you purchase anything via the links with Amazon in my blog posts, I receive a small commission at NO added cost to you. This just helps me a little to maintain the website and continue to provide useful and empowering resources for parents and carers of children with special needs and disabilities. Thank you. x