Category: General

It’s Almost Impossible To Escape

October is a really shitty month for me. A difficult, sad and stressful month. The 23rd October brings around again the anniversary of my Dad dying, followed by his birthday on the 24th. A double whammy.

When I’m talking about Emotional Resilience, on here, Facebook or at my workshops, I am usually referencing it with regard to having a child with Special Needs. However, something I share is that it is also something I have been practicing in other areas of my life. Often that resilience is needed to cope with the big life events like watching your father die and at other times it’s dealing with smaller situations or perhaps how you allow others to make you feel.

Nine years on and in many ways, it doesn’t feel any easier. I’m not sure it ever will. However, I know the signs better now and have strategies to see me through. I arrived home from school drop off and walking the dog on wednesday morning. Ollie just knew, straight away, that I was crumbling. I hadn’t really been thinking about Dad or feeling sad but suddenly the swirl of emotion started to bubble up from deep inside. I totally believe having a god cry is essential. Let it all out and start again. Although, I hate crying because honestly, I don’t look or feel good for it. I’m one of those red, blotchy, puffy frog eye types of criers. Not attractive and requires multiple re-applications of make-up to look reasonable.

 

Can’t resist a cheesy 1980’s moustache & psychedelic shorts photo. Me and my Dad at the Duxford Air Show.

Within the Getting Your Voice Heard Workshops, I talk about getting into the right state to cope with upcoming events/meetings etc. Within that practice is understanding that we experience life with all of our senses – taste, sight, touch, smell and sound. This is also how we remember our experiences. That’s often why you will smell a fragrance and be reminded of a loved one or perhaps, like me, the smell of Skips reminds you of the time you ate too many as a child and vomited. Never ate them again I can assure you.

This is what was happening to me. Unfortunately my senses weren’t allowing me to get into a positive state this time. The whole month of October was spent going to and from the hospice on a daily basis. Everything about the month of October reminds me and takes me back to that point. Walking the dog, how the air smells, the mostly sunny days, dew on the grass, cool in the evening, conkers on the floor and the light of the day, the rapidly approaching decay of life and of season into Winter. It’s almost impossible to escape it.

So, although I am often taken by surprise, I am more aware and prepared for it. I advance book to see my Osteo, one of the only ways I can release the tension build up. I spend time with Ollie and the children because apart from the fact that I love them, it’s almost impossible to have two minutes to myself to get caught up in how I’m feeling. I have failed slightly this week but I’m conscious of getting an early night. Everything is so much harder to cope with when sleep deprived. I take big doses of vitamins,  try to eat well (on top of the chocolate for comfort) and drink more water. Seeing friends for Prosecco also seems to help. Who knew? Getting the balance of distraction and rest is key for me.

This is how I cope when I’m dealing with more stressful times with Freddie too, which is why we talk about all of these things to understand what emotional resilience is and why we need it.

The past few weeks have also required me to try to impart some of this to my four year old, Bella, as she started school this September. New environment, new friendship circles, new rules – new everything. It’s mostly extremely positive and exciting so far but unfortunately, there has been an older child who has been ‘picking on’ Bella and her classmates. Nothing particularly serious but a little daunting non the less when you are only four years old. We have talked about how she can handle it and what course of action to take. I too have, of course, raised it with her teacher. I hope I’m giving her the right tools to deal with it, especially if at any point it becomes more serious. Something I am incredibly mindful of though is that children and adults for that matter, rarely act out unless they are struggling. Perhaps the child is unhappy, worried or fearful about something and feels more in control when behaving in this way? Who knows? What I do know is that the child needs compassion and support. The earlier it is spotted and worked through, the better for everyone. I also know how I would feel if it was my child behaving in this way. I would be gutted. It’s possible for any child to start acting out for a whole variety of reasons. I’m conscious that being the sibling of a child with special needs brings with it many emotions and challenges. I can only do my best to give her the resilience tools she needs and hope for the best. If she was ‘picking on’ others I would hope for compassion towards her and to me as her mum until it could be resolved.

Emotional resilience is always a good thing to practice. We are human and humans suffer at times. We need compassion and ways to cope so that we can enjoy life during the fantastic times.

Keep an eye out for the next set of dates in November for both Getting Your Voice Heard – How to be a Velvet Bulldozer and Emotional Resilience – The Ebb & Flow of a Special Needs Parent, in conjunction with Entrust Care Partnership.

Ax

 

 

 

 

 

A Breakthrough for Freddie

I feel like I’m living two parallel lives at the moment with Freddie and Bella. Bella just started reception and is flying. she loves all the new things she is learning and is chat chat chat about it all. I’ve even had to go to school for a lesson in Phonics and I am regularly told by Bella that I have got it wrong. “No no no. It’s not D for Daddy, it’s D for Dinosaur.” Whereas Freddie, mostly tells us about the fun things like playing bat and ball and swimming. He is learning academically at his own pace with his own targets.

I’m honestly slightly (extremely) nervous about how, as they all progress their school careers, I am going to fit in helping Freddie with his essential daily Speech Therapy, Bella with a plethora of mainstream homework (most of which I anticipate having to Google first) and get them all fed and into bed each night before they meltdown with exhaustion. Never mind how it will work when Jago gets to school! Eek.

We don’t talk a lot about academic results with Freddie, more focus on personal care and independence skills at the moment but I know School are working hard behind the scenes. Then, yesterday a lovely news piece came home in his book bag. He has been able to write an F for quite some time, he recognises his own name and he has letter recognition for all in the alphabet but that’s roughly where we plateau. Then we see he is working on the other letters in his name too. Trying so hard and doing so well. It’s just a bit of a proud moment for us really and I wanted to share his breakthrough. x

Bella’s first day at BIG school

Tomorrow is Bella’s first day at BIG school. I’m excited for her and a little apprehensive maybe. I didn’t totally love school, so I hope she adores it. I’m not sad to be walking her (or driving if it’s chucking it down) to her first morning. I’m grateful.
We couldn’t be there for Freddie’s first day at school because he attends a Special Needs school. He has transport to take him there and bring him home. We missed his first morning. We didn’t get to walk him to the gate and hand him over safely to his teacher. We just had to hope everything would be ok. That was a great sadness.
So, as much as I can’t honestly believe my baby girls is so grown up and that I will have two children at school from tomorrow, I’m going to enjoy the drop off to make up for not being able to with Freddie.
She is going to rock it, I’m sure.

I’m also painfully aware that tomorrow brings the one year anniversary of RDs passing. His mummy won’t be taking him to school either. Big love to you ED. Wrapping my arms around you all. xx

A friend of mine, Sonia, (don’t kill me for mentioning you) adapted a poem, which she shared in one of our groups today. I wanted to share it with you.

Here is hoping everyones first week is a good week. x

No mother prays to deliver a child with special needs.
Just as nobody prays to die, so that they can be brought back to life with a bolt to the heart.
But, that is exactly what happens when you become the mom to a child with special needs…
a little piece of you dies, but your heart is re-born.
What dies?
Any naivety left from your youth
The belief that bizarre and heartbreaking things only happen “to other people”
The notion that adults would never discriminate against a child
The concept that fighting for your child is something only needed in times of dire distress
The realization you will never have an “empty nest”
The fallacy that total relaxation actually exists
What is born?
A love like you’ve never experienced in your life
An inner strength you never knew you had
A voice deep in your gut you didn’t know was there — the voice of advocacy
Pure, unadulterated joy (reserved for milestones you never expected your child to meet)
Gratitude for what your child has and who he is, not what he lacks or who he is not
Thanks for people in your life who understand, encourage and embrace
Awe at the resiliency of your child
Respect for the kindness, compassion and protectiveness of your family.
A better you.

SWAN UK at Cotswold Wildlife Park

Today we had our SWAN UK trip to the Cotswold Wildlife Park. After days of pouring rain, the sun came out and shone down on the park.
We didn’t get off to a particularly smooth start in our house. Some personal care issues, a Swan melt down from a very stressed and upset Freddie, a bird stuck in the log burner which caused Teddington, our Jack Russel, to bark and bark as if we had an intruder in the house and 2 siblings who couldn’t wait to get going. Phew.
We were a bit behind schedule and then hit two huge traffic jams. After a chaotic morning, we arrived late but in one piece. Not great for the Parent Representative to be probably the last person to arrive but we did have balloons.
Many of our SWAN UK members met at lunch time for a picnic on the grass. So great to meet new families and also to see some familiar faces. Everyone seemed to be having a great time. It was lovely to see our SWAN UK balloons, lovingly filled with helium by my hubby Ollie, travelling all over the park as the families wondered, taking in the sights.

I just love that only Freddie is looking at the camera. Ha Ha, photo fail.

We saw Monkeys, Lions, Giraffes, Rhino, birds and Penguins to name a few. The train ride was an essential part of the day. I think we heard “Freddie on train” around 100 times during the picnic and trip to the playground before we even got to the train. Bella was most pleased that Bella is also the name of the train.


The Cotswold Wildlife Park now has a Changing Places facility which made a huge difference to the enjoyment of the day out. No undignified changing in the boot of the car in the car park this time. Instead, a private place to take care of your loved ones personal care needs. Big high five to CWP.

It was then time for an ice cream before the trip home. Oh and the joyful visit to the shop. Bella was determined to buy something with her pocket money. She is now the proud owner of a cuddly toy pig. She has given him the very original name of Piggy. Yay, more soft toys.

Freddie, Bella and Jago were asleep in the car on the way home within 5 minutes of leaving the park.

Thank you SWAN UK for giving us a fab day out and the chance to meet other SWAN UK families. Looking forward to the next day out. xx

Friday Night is Out Out Night

I think I can safely say we have survived week one of the school holidays. It is all in the planning.

Freddie has been pretty tired and suffering from sensory overload which is normal for the end of term. Thankfully he doesn’t seem to have experienced any Absence Seizure activity but we have had a few mornings of constant screaming and crying. It is an endurance task thats for sure. How SAS recruits get through the task of listening to a baby screaming constantly for three days with their eyes blindfolded I will never know.

It hasn’t been all screaming mind you. We had a Party for my Grandpa’s 90th Birthday, A trip on the mini London Eye wheel in Stratford Upon Avon with my Mum, a trip to the MAD Museum, a play date (kids go wild eating too many sweets whilst I drink tea and chat with a friend) and I managed a few hours out on my own thanks to Gagoo.

Star of the week goes to Freddie though. We have been working on helping him to take off his own shoes and socks independently for a long time now. This week he did both shoes and socks totally independently. Not just once but twice. Might not sound like much, especially as he is 6 years old but this is a major achievement for him. Working those fine motor skills and planning. Very proud.

Bella, although only four years old, is already battling me for my hairbrush. WTF? I was ‘informed’ this morning that I take too long drying my hair and that she wasnt finished with said brush so I would have to wait. Heaven help me when she reaches teenage years.

Jago woke me this morning and whispered into my ear “Mummy, ice cream” “Mummy, pop pops” “Mummy, sweeties”. I promise, I really do feed my children a well balanced diet. Since when do we have those things for breakfast? Got to give him credit for trying mind you.

Last but not least. Ollie likes to keep me on my toes by coming up with an ever growing list of things he can do to really annoy me. It’s part of what keeps the laughter going really. It could be anything from talking constantly in a stupid voice whilst I’m trying to have a serious conversation with him to touching my teeth whilst I’m talking. Getting the feeling he wants me to stop talking. LOL.

This weeks efforts have been to physically shh me whilst talking. Pretty much like the scene from Dumb and Dumber. Argh. He is a constant wind up merchant.

Thankfully we get to go ‘Out Out’ tonight. I’m a little scared. Our friends are pretty good at drinking and I’m really NOT good at drinking. I will be attempting to drink a glass of water with every Gin & Tonic and I definitely won’t be going at the same pace. Three small people depending on us for their entertainment tomorrow, no sleeping in until lunch time and sitting around drinking tea all afternoon for us. Ah, those were the days.

Have a great weekend. xx

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.

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 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 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 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 aimeemannmentoring@gmail.com

 

P.S…

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.

Planning

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.

 

P.S…

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

Soul Food: Fuelling Yourself With Energy

Being a parent or carer of a child with special needs and disabilities can be pretty exhausting. All the extra lifting, personal care, therapy, appointments, challenges and disturbed sleep contribute to overwhelm and exhaustion.

It is imperative that we look after ourselves as much as we can. One of the ways is with soul food, the right food to fuel us with energy.

Here Are My Top Tips.

Make sure you include some Iron rich foods. Plant based sources likes beans, lentils and spinach. Make sure you eat them with Vitamin C rich foods to assist the absorption of Iron.

Avoid refined sugars and carbs and gofer slow release whole grain versions, like brown rice and wholemeal pasta. Oats are also excellent for slow release energy, as is quinoa.

Good fats are essential for energy. You could look at nuts, especially walnuts and almonds plus seeds such as sesame and chia. You could serve them with live yoghurt and berries or a some mixed oats. You could make an overnight Bircher Muesli, like this one in Deliciously Ella, in advance for a quick and easy to grab breakfast.

Antioxidants are also important for energy as they fight free radicals and help cells to perform at their best. Anything with Vitamins A (carrots, eggs, butter, kale, spinach & broccoli), C (strawberries, lemons, oranges, broccoli & grapefruit) and E (avocado, spinach, sweet potato, almonds & wheat germ).

A practical, easy way to get your fruit intake up is to buy frozen fruit.

Lean protein will also help to boost your energy levels. Poultry, white fish, oily fish scubas salmon and mackerel. If the smell of a roast dinner or a warm and spicy curry fill your mind with happy memories then indulge in what gives you comfort. Food for the soul.

Pick just 5 of these items to introduce into your day and I am sure, like me, you will find it makes a difference to your energy levels.

 

 

(I am not a qualified nutritionist, these are just some of the food choices I make to help with my energy levels and all opinions are my own.)

 

 

 

“Your Positivity Makes Me Feel More Low!”

“Your positivity makes me feel more low.”

Well, this really was a first for me. My being positive making someone else feel less positive? Wow. I was a little lost for words for once.

Someone who has always been in my life and loved me as I have loved them, told me that my positivity makes them feel more low. I won’t go in to the full conversation, to save the upset of the person should they read this blog one day. However in short, it was a conversation about some of the sadness we have experienced in life with our disabled children. Different eras and different disabilities and I’m inclined to say their experience has been somewhat more extreme than mine for various reasons but non the less we share a life path in many ways.

I wanted to know about some of the lovely memories and positives she could recall. Apparently life had been so bad she just wasn’t able to think of any and she told me that my positivity made her feel more low! I tried to talk it through with her but unfortunately the conversation didn’t end well which has made me very sad.

I regularly have days or moments when the chronic sorrow (click here for a previous blog post about this) is present and times when it’s a real challenge and I want to tell the world to get lost. However, I have worked really hard to build my emotional resilience. It doesn’t happen over night and it takes a sort of practice. You don’t suddenly get a six pack after twenty sit ups, you practice and repeat (no wonder I’ve still only got a one a one pack). For me, it started to build once I had accepted our current reality.

The grief I felt at each stage during the realisation that life wasn’t going to be as I had imagined was overwhelming at times. That phrase ‘heartbroken’ couldn’t be more apt. When my Dad died, at the young age of 56 just two years before Freddie was born, I truly felt my heart had been smashed into a thousand pieces and I felt that same pain at times with regard to Freddie. The fear, worry and sadness was immense, especially during my pregnancy and the early days. This was compounded by the lack of diagnosis to explain Freddie’s special needs and disabilities.

Our Words Impact Our Life

I truly believe that the language we use impacts our state. The more negative you speak, the more negative you are. This is one of the reasons you won’t hear me say, especially in a workshop, that I’m ‘fighting for services” or “it’s a battle’ for Freddie’s therapy needs or that I am “inferior to the professionals” in our lives. Yes, it is a challenge and to be honest, I am exhausted most of the time but life is short. The words we connect to our experiences can become our experiences. There is a great book all about this, Words Can Change Your Brain, Dr Andrew Newberg M.D & Mark Waldman.

“A single word has the power to influence the expression of genes that regulate physical and emotional stress.” 

“Angry words send alarm messages through the brain, and they partially shut down the logic-and-reasoning centers located in the frontal lobes,” 

If we use negative talk at home about Freddie and his needs and challenges in front of him or Bella and Jago, they too will feel that negativity. Our words are their words.

We want them to grow with high self esteem. If Freddie thinks we are sad about him, I can only imagine he will be sad also. So, we celebrate his achievements each day, the same as we do for Bella and Jago.
I totally believe I can get anything, any service etc that I need for Freddie and that he can achieve anything with our love and support. It might take time and I might need to try many different routes but I am determined. Don’t get me wrong, I’m not a robot and I stumble and fall at times but that’s all part of it. You’ve got to believe you can do it to give yourself half a chance if achieving it. Thats just my way and what pushes me forward.
I choose to focus on the positive side for the majority of the time and I choose to see and celebrate the positives. I choose to make the most of our life together and experience as much as possible, just as I had intended before we had children and before disability entered our lives.

I always hope my positive state and emotional resilience is a source of encouragement to others. I know that not everyone is in the same emotional place as me and I get that, I really do. I was there myself and I still have a way to go but if I give in, I think it would be a disservice to our family.

No one experiences their life without difficult times and without some sadness but we can chose what we do with those experiences. x

 

Undiagnosed Children’s Day 2017

On April 6th, I attended the quarterly learning session at the Horton General Hospital – Oxford University Hospitals, to present to an audience of Medical Professionals. I spoke to them about my son Freddie and what it means to be disabled/ have special needs and to be undiagnosed. Having no known reason for your difficulties and the challenges we face as a family.

I shared our story to highlight the amazing work carried out by SWAN UK, supporting families whose children have no official diagnosis. SWAN UK is the ONLY DEDICATED SUPPORT NETWORK available for families like mine. It is really important that as many medical professionals as possible, learn more about the undiagnosed community and that there is support out there for those families.

I didn’t find SWAN UK until Freddie was two years old. Those first two years were incredibly isolating and frightening. They were also frustrating. I spent a huge amount of time on ‘Dr Google’ looking for the answers and looking for ‘another Freddie’. I wanted to know we weren’t alone and I wanted to know his prognosis. Constantly wondering if your child if life limited and how or if he will continue to progress is so stressful. I have now found others similar children, in presentation, to Freddie but as yet we still have no prognosis.

The Stats

Did you know that around 6,000 children are born each year in the UK without a diagnosis to explain their disabilities and special needs?

Around 50% of the children having Genetic Testing  through The NHS won’t receive a confirmed diagnosis.

Approximately 30-50% of children with severe learning disabilities/congenital abnormalities may not have a diagnosis to explain the cause of their disabilities.

The Support

SWAN UK offer 24/7 support to families at home and in hospital.

We run regular events to bring families together and make precious memories. Those events also allow siblings to make new friends who understand.

SWAN UK provides a lot of educational tools for both professionals and the families they support . This helps improve services so all families receive high quality coordinated care  and appropriate testing/treatment. This is often very difficult to achieve without a diagnosis and coordinated care.

Undiagnosed Children’s Day 2017

We are in the month leading up to Undiagnosed Children’s Day on April 28th. On this day, SWAN UK (Syndromes Without a Name) will be highlighting all the services they provide to support undiagnosed families. We need to raise  money to continue this support and we have another big target for 2017.

There are many many families out there living without a diagnosis and without support, who could benefit from being a part of SWAN UK. We know they are out there, we just don’t know where. Our target is to find them and double our membership. SWAK UK wants to support as many families as possible.

Thanks to The Horton General Hospital and big thanks to Clay Lowe for filming and editing my talk.