Don’t call me super mum. I am not OK and that’s OK.

We are our own worst enemy. The hard time we give ourselves over things out with our control is worse than anyone else could give us.

Regularly people tell me I am a supermum, superwoman or that they couldn’t do what I do daily, raising a child with a variety of health needs and disabilities.

While it comes from a good place, and I’m sure it’s meant as a compliment, all this does it exacerbate the sense that I shouldn’t feel the way that I do sometimes. It perpetuates the myth that we all need to be strong and 100% in control of our mental health at all times. Its unhealthy, and it leads to a barrage of emotions and inner turmoil we should have to keep locked up for fear we may appear weak.

2 weeks ago, Hannah had a huge seizure which required 5 different rescue meds. She seized for 86 minutes and was moment away from being intubated again and placed in an induced coma to get the seizure to stop.

I held the space for her while we were in resus, administered some of her rescue medication while the doctor held her airway open. I remained calm and steady throughout despite a team of up to 15 medical professionals fighting to keep her alive.

One holding her in a jaw thrust to keep her airway open, others trying to place a cannula on a fitting child, watching her shoulder pop in and out of place and hoping as each medication was administered that this was the one that would stop the seizure. I watched a few times as she visibly stopped breathing, her chest flattening and staying completely still for what seemed like an eternity until her incredible will to live kicked back in and she started breathing again.

When the seizure stopped and Resus was calm again the doctor told me that I was amazing, calm and that I could work for her anytime.

Here is the reality – This isn’t the first time that I have witnessed Hannah in this position, in fact it’s been more times than I can count or recall. Almost 5 years ago the seizure never stopped and she was on life support for 5 days. This was her first serious seizure and it left me with PTSD, I was pregnant at the time it happened with Molly and I went in to shock in the resus room and they made me leave.

After that followed a period of anxiety and PTSD which I sought help for and worked through so I could continue supporting Hannah on a daily basis. But PTSD has a way of rearing its head and my trigger is , for very obvious reasons Hannah’s seizures.

I quickly learned that being hysterical while Hannah’s life hangs in the balance in resus doesn’t help anyone. It doesn’t help me who needs to hold the space for my daughter who is fighting to stay alive, it doesn’t help me who has to administer very heavy duty medications to a seizing child and who needs to feed all the information to the paramedics and doctors so they can treat her properly, and it doesn’t help the doctors who need me to be coherent so they can get the right information from they need and that they can focus on her not a hysterical parent.

Believe me, my calm exterior betrays how I feel inside. My heart is pounding and I have a lump in my chest, right in the middle below my throat a knot builds and builds until I feel like my own airway might close. My hands are in fists to stop them from shaking.

In the most recent seizure I was also multi-tasking, texting my husband telling him to get to the hospital asap and ask my sister to come and sit with our other children, keeping my mum (in another country) up to date, while constantly communicating with the strangers saving her life.

Supressing even the tiniest bit of emotion and staying steady.

“If she has got this, then so do I” is what I kept repeating inside my head.

And then the seizure stopped, the immediate threat was over and the staff buzzing around whittled down to just 2, a plan was made for transfer to a ward and we were passed the danger zone. I left her with her dad and went to phone my mum.

Then the tears started, but not little ones. A big ugly sob where I felt I couldn’t catch my own breath as I turned to my own mum for comfort over the phone. “Why her?”. “Why does someone so little have to fight such huge battles?”

All that holding space for Hannah came out as did the memories of our previous experience, as images of potential scenarios play over and over.

What if they couldn’t save her?

What if this is her last ever seizure? Not because she is cured, or the daily medication works, but because she is dead?

PTSD doesn’t always allow you to rationalise those thoughts, it’s compounded in fear, what ifs?, anxiety and emotion. It’s raw and in the moment and makes you feel very very lost and question you’re own ability to cope.

But then another feeling emerges that I never expected – Guilt.

Not guilt for her seizures or the life she leads. Guilt for having PTSD.

We are our own worst enemy. The hard time we give ourselves over things out with our control is worse than anyone else could give us.

Hannah’s seizure happened on our 10th wedding anniversary leaving the bottle of champagne we had been hoarding for ten years still in the fridge, plans for a nice dinner left hanging.

She was in hospital for almost a week which also happened to cover my own birthday.

I started to feel sad that I was spending my birthday in hospital looking after my sick child, that it wasn’t fair and didn’t feel at all in the birthday spirit.

Then I started berating myself for feeling this way. How dare I feel so sorry for myself, when other parents spend their birthdays like this, or worse without their children because they have outlived them.

How dare I suffer mental health problems after witnessing Hannah’s seizures when it’s her who has to physically endure them, It’s her that’s left in pain for days afterwards as her muscles ache and her throat hurts and her skin is raw from allergic reactions.

On top of PTSD I was further beating myself up for feeling the way I did until I gave myself a good talking too. My feelings and fears are real. Hannah’s battles are real. I am not super mum.

My first day back at work after Hannah came home I felt teary all day, and whenever anyone asked if I was ok or how Hannah was I mumbled something incoherent and fought the tears back. I made it harder on myself because I was worried about what people would think if I was an emotional wreck. I was an emotional wreck and yet I was still beating myself up that I shouldn’t feel this way. I needed to be strong but I didnt feel it in the slightest.

My manager asked if I would be ok. I said I was “fine” so he asked me again. I told him through tear filled eyes that I would, but it was going to take me a little time.

So these are my new mantra’s when I feel like I’m holding it all in

It’s ok to not be ok.

It’s ok to feel the way you do, It ok to cry and say it’s shit and feel like the entire universe is against you.

It’s ok to hate epilepsy and feel angry that your child has to fight such huge battles and feel annoyed that epilepsy doesn’t care about dates or occasion.

It’s ok to understand that the effects of seizures are not limited to the person physically experiencing them.

There’s a good chance that the doctors and nurses also had to somehow deal with the effects of watching Hannah fight so hard. They may have left the room and also had a cry

They may have missed an important event or ran over their shift end time because they were also fighting to keep Hannah alive, you don’t just clock out halfway through a medical emergency because your shift ends.

My shift never ends.

I am there, 24/7, every seizure, every trip to resus and every night as I tuck her up and pray that she will still be whole when she wakes in the morning.

That I won’t sleep through a seizure and miss an opportunity to save her life.

I am not supermum, I am fallible, I get it wrong. I live in constant fight or flight mode and when my phone rings when Hannah isn’t with me I take a second to mentally prepare myself for what could be about to come.

I am good in a crisis, but I feel it hard afterwards and I am actively working on giving myself a break. It’s ok to have PTSD , it’s ok to not be ok.

I will not feel guilty for feeling so deeply everything we experience. I will not harden myself to the point I don’t care. The reason I feel so deeply is because I care so deeply.

I am not supermum, I am human.

People who say they couldn’t do what I do? They could. You have to. You have no idea how you’ll cope until it’s your only choice. I can’t crumble because Hannah relies on me being ok. So I’m going to stop feeling guilty and deal with what I need to.

I’ll cry when I need to, I’ll rely on my support network and say “I am not ok”.

I’ll feel what I need to feel at a time that’s appropriate and not beat myself up for that release

And I’ll keep going because as long as Hannah has to fight her battles then I’ll be right there beside her holding that space for her and guiding her through. I’m just so lucky that I have others doing the same thing for me.

Right now, I am not ok. I will be, It will just take some time and a realisation that I need to stop being so hard on myself

Help Hannah meet her Ultra Rare 8p Family and also help Science

Hey all.

We would really appreciate a wee share even if you can’t manage to help us out.

As many of you who know us are aware, our eldest Daughter Hannah was born with an ultra rare genetic condition called Inv Dup Del 8p which only has 65 known cases worldwide. This means she has a deletion and a duplication of genetic material on her 8th Chromosome, or as we like to call it Wonky Genes. It’s a unique genetic arrangement which causes extreme cuteness, the cutest dimples and fabulous eyebrows. It also means she lives with several disabilities both cognitive and physical.

She has a learning disability on the more severe end of the spectrum and she also has Epilepsy which in Hannah manifests as prolonged seizures, usually lasting around an hour and needing pretty heavy duty drugs to stop them. It usually ends in a hospital stay and a very poorly Hannah.

This is Hannah is resus just 5 days ago. (Wednesday 23rd January 2019)

Apart from our close and local family and friends we get unending support from our 8p Family, the families of the other 65 people worldwide with the same diagnosis. We share everything allowing us to all be experts in such a rare condition. One of those parents the formidable Bina Shah created the Project 8p and has arranged a conference in New York, USA in June 2019.

The Foundation has recruited geneticists to launch a study in to Hannah’s genetic condition to help those affected and get some true information about how it affects others and how the subsequent disabilities and health complications associated with this genetic condition can be best managed.

At this conference, will be some of the world leaders in genetics, cardiology, epilepsy and general medicine as well as the centrepieces of the entire reason it exists. As many of the other Inv Dup Del 8p families as possible.

In short, this is a trip that we cannot financially afford, but for Hannah to meet others just like her and to hear from medical professionals who can help her live her best life, it’s not something we feel we can afford to miss either. Other families plan also on travelling from Australia, New Zealand, the Phillipines, Mainland Europe, South America and also from across the USA. It will be truly magical to have so many ultra rare kids in the same place with the same diagnosis.

I know it’s a big ask but we are hoping that if those that love us and Hannah can even spare a few pennies then it will help us actually meet and hug some of the people we have built huge friendships and support networks online with, it also allows us to help shape the future of how families with Inv Dup Del 8p will feel when they get such a scary and unknown diagnosis.

Our 8p Kiddos will change the future of science and genetics

I must stress that although it seems a popular tourist destination it will be far from a holiday. The conference will be held at Columbia University and we plan on staying quite close by. I Rebecca (mum) and John (dad) will be going with Hannah. We both need to go as in the event of a seizure we need back up. Nana will mind Molly and Daisy at home in Glasgow. The Conference is on Fri 28th June-Sun 30th June – we will fly out Thursday 27th and return Monday 1st July.

We plan on keeping costs as low as possible and our fundraising amount covers flights, accommodation (bed and breakfast) and travel insurance ( a must with Hannah’s medical conditions) as well as the conference entry fee.

We really, really hope you can all support us to allow Hannah to meet her 8p buddies and realise she is not alone in the world and that there are others just like her. And we promise to post loads of pictures of all the cuties together and keep you all up to date with the progress of the study

Battle fatigue and burnout when raising a disabled child. It’s real and it’s around the corner!

Parenting is a tough gig. No one ever truly prepares you for the sleep deprivation and fatigue in the first few years of parenthood. Add a child with PMLD (profound and multiple learning disabilities) in to the mix and you are catapulted into the stratasphere of inability to function without copious amounts of coffee and a twisted sense of humour.

I am utterly blessed to have 3 children under 6. We spent 5 years trying to conceive our eldest child and had almost resigned ourselves to the possibility that children may never be on the cards for us. Thankfully that wasn’t the case but our journey is not the one we expected or longed for in all those dark days of infertility.

Almost 6 years in to my parenting journey and I feel like I’m heading for burnout. It’s not the nappies, the feeds, the childhood illnesses, the being up during the night with the kids when they need me. I adore those nights where one wakes up upset and wants me to scoop them up and snuggle them down and be their safe place as they melt back in to me and drift off again.

My exhaustion comes from having to be constantly in battle mode.

I feel like we conquer one battle only to move on to the next. You slice the head of one battle and 3 grows back in its place. In addition to being a mum I also work full time in a call centre. I work 9 hour 45 minute shifts either 4 or 5 days per week depending on the week. I’ve just had 2 days “off”. These days were not spent taking my kids out, catching up on housework or even sitting with my kids playing with their toys. They were spent gathering evidence for Hannah’s DLA renewal, fighting our housing association to get the large communal area enclosed for the children’s safety and having the most frustrating of conversations with our disability social worker regarding Hannah’s Self Directed Support application.

Social work want to know why Hannah needs a large size changing table to meet her continence needs and why we just can’t lie her on a plastic sheet on the floor. Yup. You read that right! With all the campaigning for changing places facilities we are still having to have these conversations with professionals. I explained that apart from the fact that it’s disgusting to change ANYONE on the floor, my back can’t handle changing her on the floor. What if my back goes out? I can’t work therefore can’t earn, I can’t function therefore I can’t care for my children.

She also then proceeded to say well really Hannah is just like any other 5 year old mobility wise. It might have been at this point my voice got raised and without shouting at her, very firmly told her that I won’t stand for anyone downplaying my daughter’s disabilities just to reduce the services she is entitled to. She backtracked at this point and tried to state she was playing devil’s advocate for when out application goes to the next stage but I don’t buy it.

Then there’s the dreaded DLA renewal. So far I have had to re-apply for Hannah’s DLA 5 times. One of those actually went all the way to tribunal. We get awarded 1 year at a time as her needs might change. Unless her 8th chromosome grows back I doubt it. Hannah will always have PMLD. That’s not me writing off her future or not having faith in her ability to progress. It’s fact. Her condition is genetic and as it stands she is delayed by over 60% of her age. So why do we have to fight so hard for everything.

I understand budget cuts. I understand being understaffed. What I don’t understand is mis-allocation of resources in the public purse. Disability benefits being put in place then millions spent in trying to prevent people from accessing them or disproving their entitlement to them. Health services focusing their spend in a reactive way and only helping in crisis when it would cost much less to provide a preventative service.

I am grateful to live in a country where disability benefits and an amazing healthcare system are in place. But accessing them for my daughter costs me my own physical and mental health.

The time Hannah spent on life support in 2014 could have been avoided had she been properly assessed and given antibiotics. Instead she had 6 GP appointments, 3 of those were out of hours, a 40 minute seizure where she aspurated her stomach contents and it almost killed her, almost 2 hours in resus with 20 doctors fighting to keep her alive, an emergency CT scan, 5 days on life support with round the clock 1:1 care, countless expensive drugs and tests, a further 4 days in hospital and the subsequent mental health treatment I needed to get over the PTSD I suffered as a result of witnessing doctors intubate my child as they fought to save her life. The cost of all this easily ran in to tens of thousands of pounds.

I am grateful but I am also exhausted. We’ve battled more than anyone should EVER have to in the last 5 years and it shows no sign of letting up. But if we don’t do it, then who will? So I have to straighten myself up, suck it up and keep going (with the help of coffee and a wonderful support network of family, friends and fellow warriors). It’s my only choice. Hannah didn’t ask to be born with disabilities. No one does. She has fought so hard to stay alive so far. The least I can do is fight her battles that she can’t, for the things that she needs to keep fighting her own battle and keep her safe, secure and healthy.

My own mental health and fortitude is tested repeatedly and I just hope that things get easier. The more people challenge and and fight constructively then change WILL happen. It won’t re-write our history but if fighting these battles means it improves things for Hannah and all those families that come behind us so they don’t have to fight so hard then it’s worth it.

What I wish I had known when we got a Rare Genetic Diagnosis for my child.

I’ve told our story and battle to diagnosis many, many times, but recently I’ve been thinking about when we got that diagnosis, and what support (or lack thereof) was available to support us. I think about those families walking the path behind us and know they feel the way we did. Regularly people contact me when their child has been diagnoses with Inv Dup Del 8p and ask for advice, they ask about Hannah’s development and all the other questions they have racing through their brain after the news, but the strongest sense I get is that they just don’t want to feel alone. Some have got a diagnosis quite quickly, others have had a similar lengthy battle as us.

Although our initial experience in trying to gain a diagnosis for Hannah, and to be believed that there was something underlying going on, was not a pleasant one, once the health care professionals had agreed that it needed investigating further things moved quite quickly. Once Genetic testing was ordered, bloods were taken and the results were back in about 12 weeks. I did have to chase people slightly but that was my own impatience. Having been accused of Munchausen’s by proxy, called neurotic and told that my daughter was simply lazy, I was so relieved when we finally got a diagnosis. I felt vindicated that everything I had fought for was not in vain. I cried because it was confirmed my daughter was disabled, equally I cried in relief at the confirmation that I was not neurotic or overprotective. I was right and I had fought so hard on her behalf and it had paid off.

Our genetic diagnosis was actually a curve ball that blindsided us. Health professionals and us, her family had been convinced that she had Cerebral Palsy due to her birth so this took us all by surprise. I was also 16 weeks pregnant with my second child when we received the diagnosis which led to an uncertain few months wait to find out if my husband and I were carriers and if our new baby was also going to be affected. Hannah’s’ condition is De Novo meaning it’s a new genetic arrangement not inherited by either myself of her dad. We wanted a diagnosis because we needed health professionals to believe us and help us where Hannah was struggling. Issues like feeding, reflux, hypotonia, hypermobility, global developmental delay and seizures had us concerned. We fought for a diagnosis to be able to access the services and early intervention teams that would support Hannah to be the best version of herself she could be.

When we were given the diagnosis our geneticist didn’t know much about the condition as there are only 65 known cases worldwide. We were painted a pretty bleak picture of a future for Hannah and handed a leaflet for Unique. We were told she would likely never walk or talk and would need lifelong care due to her disabilities. I now know this to be incorrect. Disorder guides and expectations can be useful in painting a picture of potential development however they do not define your child’s future. While useful as a rough template for potential health concerns, condition guides don’t account for love, tenacity, stubbornness, nurturing, encouragement, happiness, strength and determination. Hannah has proven everyone wrong and continues to develop far beyond any limitations placed on her at the time of her diagnosis. It’s difficult to see the light when so many medical notes are written in such a deficit led way but by changing the way we speak about their challenges helps others see their potential as much as we do.

I am regularly caught between not letting Hannah’s diagnosis define her life and also raising awareness of rare conditions and what they mean for families like ours. I often say that although I wish I could take away Hannah’s challenges I wouldn’t take away her wonky genes. They are so intrinsically her that to change her would probably completely change her, the person we love. Although she doesn’t look “syndromatic”, most kids with her condition look similar and could pass as siblings, the mostly have wide smiles, dimples, beautiful eyes and the most incredible eyebrows. They also all love music and thrill-seeking and being upside down, proving that changes in genetic material can also be a beautiful thing. We are lucky enough to be in contact with almost all of the other Inv Dup Del 8P families in the world. For us having a diagnosis means we can connect with these families and share our lives, ups and downs, celebrations and hard times with others walking a similar path. We can share what works for our kids and what doesn’t and support each other on the tough days. There are still tough days even now 4 years after diagnosis when I question “why Hannah” but then I look at all that embracing her diagnosis has both brought me and taught me and I would have it any other way.

Here is my advice I tend to give parents and caregivers when they ask and Its what I wish I had known when we got that diagnosis almost 4 years ago.

It’s ok to feel relieved- especially If you have fought a hard battle to get to this point. Relief that you trusted your own voice and kept going until you got answers

It’s ok that even if you got the answer of a confirmed genetic diagnosis, you now have 60 million more questions. You now have a direction you can research in and connect to get answers.

It’s ok to grieve. This is a tough one, but it happens, you are not grieving for your child but for the picture you initially had in your head of what your lives would look like. Remember though, it’s ok to feel all those feelings you can’t quite explain, or feel guilty for having – own them, feel them, sort through them BUT don’t let them weigh you down and carry them forward. They serve no purpose moving forward and can prevent you from seeing all the joy that is to be had.

Don’t expect professionals to have all the answers – its not their fault, the likelihood is, especially with rare conditions, they have simply never come across the condition before. Become the expert in both the condition but also what it means for your child. Remember that like a lot of things genetic conditions come in a spectrum, two children with the same condition may be complete opposites in terms of health, abilities and presentation. Be the expert in YOUR child. Work WITH professionals, not against them. It’s hard to change that if you are used to battling but it’s important to form a coalition with them and redress any imbalance of power.

Join Unique at

They can get you in touch with Families with a similar diagnosis and have the most up to date and comprehensive guides to each condition. They speak to families and collate all the information in to easy to read guides to help you understand your child’s diagnosis. They also arrange family days, raise awareness and support families who are registered. They have a facebook group and a newsletter. They do all this for free from fundraising and get no government funding so help them if you can.

Join Facebook groups with other families with the same condition, they are a treasure trove of information, lived experience, love support and guidance. I would be lost without our 8p family and count them as just that, Family.

Hannah and her buddy Ella. They both have a similar 8p diagnosis.

By all means research the condition and connect with others with the same condition, share stories, and connect with others with the same condition BUT don’t define your child’s future by others development. Guides, while useful don’t account for love, tenacity, stubbornness, nurturing, encouragement, happiness, strength and determination.

Summon your inner strength. Its not a straight road, there is twists and turns, conserve your energy for the battles that really count. Don’t waste time on prisoners.

Always assume competence and capacity. Seek out like minded others who align with your vision and values. It’s ok for your circle to change, you may find that certain friendships end but you also find that your life becomes completely enriched by your new friendships and connections.

Be an advocate for change and challenge social injustice. Stand firm in your beliefs but always move forward. Speak your truth. As Nelson Mandela said

“Be the change you wish to see in the world”

I don’t know everything, but I keep trying to find the joy, the silver lining, the happiness and I refuse to allow any struggles or diagnosis to define ours or Hannahs’ path. The single biggest piece of advice I could go back and tell myself is that

“Its all going to be ok”

It’s time to start getting it right! Representation of disabled children in the media.

Picture this, a beautiful child lands a modelling contract with a top brand showcasing their products, or lands a spot on a children’s TV show. It’s just another day in advertising. An equally beautiful child with special needs or visible impairment lands a modelling contract, and the story goes viral.

Shared millions of times worldwide, with captions like “Child with *insert diagnosis here* wins modelling contract” and “Changing the face of beauty: Super-cute toddler with Down’s Syndrome bags Matalan modelling contract”.

In an article in the Independent from 2005 Sue Walker, founder of modelling agency Kids London, said her agency doesn’t have a child with a disability on its books. Why not? “In the modelling industry, there is certain criterion one has to make to be a model,” she says, including the right height, body shape, and looks.

Let that sink in. Our kids apparently don’t “look right”. In a day and age where most young people live vicariously through Instagram and social media, they look up to the likes of the Kardashians and other celebrities for their own version of what ‘perfect’ looks like. As technology improves rapidly, and our phones become powerful computers that we can use to edit and place filters on the content we post online, our children are growing up thinking that they have to conform to society’s perception of what perfection is.

It’s a dangerous slope for inclusion. The children who are represented in the media now become our actors and famous faces of the future. Not much has changed in the 13 years since. Now is the time to start getting it right.

In children’s television there are more and more representations of disabled children.

Hannah Sparkles on Fireman Sam is the only child in Pontypandy who uses a wheelchair (albeit she is a fictional animated character). Special needs children appear in shows such as Yakka Dee and Mr Tumble, there are more disabled children used in big brand marketing campaigns like River Island’s recent campaign “Labels are for clothes” and characters with disabilities are becoming more regular in TV shows. However, it feels like they are there as a token gesture rather than actually being properly represented as a fully included member of our diverse society.

There are very few children’s books on the market where the child has a disability or impairment. Do publishers feel there isn’t a market for them? (Believe me there is!) Are authors just not writing them? Either way, as a parent of a disabled child I would love to be able to buy a book where my child is represented as something other than the villain. In most fairy tales and Disney films the baddies or villains all have a physical impairment of some description, like Captain Hook.

How many times in the last number of years has an able bodied actor been cast in the role of a disabled character, then been heaped with praise for their portrayal? Why not cast an actor with the specific disability that the character has? You can’t get more authentic than that.

Believe it or not, just because someone has a disability doesn’t mean they would not be able for the part. Freddie Highmore plays the part of Dr Shaun Murphy in the Good Doctor, a doctor with autism and Savant Syndrome. The show has some wonderful storylines, which highlight both how we can become more inclusive of people with autism and the prejudices they face, and the actor does play the character very well.

However, why not cast an actually actor with autism in the part? They do exist. Recently Lost Voice Guy won Britain’s Got Talent, the headlines read “Disabled guy wins Britain’s Got Talent” and “In spite of not being able to speak – disabled comedian wins Britain’s Got Talent”

NO! NO! NO! – they should have read “Lee Ridley – Comedian wins Britain’s Got Talent”. His disability is irrelevant to his talent. Yes, he uses a voice synthesizer to help with his act, but he would still be hilarious if he didn’t need that piece of adaptive equipment. As a society, it placates our moral compass and makes us feel better about ourselves if we think that people are “overcoming barriers” to do things like act, or model or be a successful competition winner. The same barriers, that ironically, society has constructed itself.

Here is a thought – let’s tear down those barriers, because simply by focusing on peoples’ disabilities, we are immediately excluding them from society’s perception of their worth. They become a token, a box to tick, a quota to fill, and it’s entirely wrong, both morally and to the detriment of future society.

My daughter is five. She has a variety of diagnosis from genetics to physical impairments to neurological differences. These are impairments which she lives with, her disability is the way society will treat her as she grows up. If things stay the same, then she will spend her entire life having to either prove her worth to earn her place ‘in spite’ of her disability, or feel like she is only involved because there is an inclusion quota.

My dream is that the inclusion movement has been so successful that it’s no longer a movement. That people, whether they are typical, disabled, impaired or otherwise are so involved in their communities and the world that there is no longer any difference made between them. That representation of all abilities in society is so commonplace in entertainment and the media, that it no longer makes headlines or goes viral. That it’s just the norm.

This blog was originally published as a guest blog spot (written by me) on

One of the sweetest inclusion stories I’ve ever heard.

Yesterday while waiting what seemed like forever to see Hannah’s optometrist at the Childrens Hospital I got talking to a lovely couple and their beautiful young daughter. If you know me then you know I don’t sit with my head down, minding my own business in waiting rooms or in life in general. I talk to people, especially when it seems that they walk a similar path to our family. That coupled with the fact that Hannah is no more a wallflower than I am, we tend to make lots of new connections when we are out and about.

We spoke about lots of things including battles for help, being listened to, their experience with the “system” and generally life as the parents of children made just a little bit different.

They told me of their daughters history and some of the stuff she had faced but also of the wonderfully inclusive community they live in. Their daughter, almost a teenager, lives with Cerebral Palsy and is non verbal (although she communicated very well when we happened to talk about Ice Cream). She is in mainstream school and has a wonderful circle of Neuro typical friends who adore her. They then told me quite possibly the most beautiful story of being included by her peers that I have ever heard. It gave me goosebumps and tears all at the same time.

A few weeks ago before the schools broke up for the summer, they had their school trip which was a day out at the local beach. One of the girls friends announced that she had used her pocket money to buy a paddling pool because she knew that this little girl wouldn’t be able to go in to the sea and she didn’t want her to miss out. (Crying yet?? It gets better). On the day of the school trip her entire class created a chain between the pool and the edge of the water and ferried buckets of water up and down to fill this paddling pool for their classmate.

Wow, just wow. These children didn’t need to be instructed, guided or told what to do. Not one adult gave them the idea of how to keep this little girl, they worked together to ensure she was included, because what good would it be, if everyone went to the beach and didn’t get to experience the water. Especially in the weather we’ve experienced lately in Scotland.

Children don’t need to be taught inclusion, they instinctively know that no one should be left behind and have an incredible creativity for solutions that mean everyone is fully included.

It makes me wonder, where along the way do we lose this creativity and innocence that everyone belongs? Is there a certain point that there is a shift in the way we think and we just forget all that we instinctively knew?

I’m not saying that in general people intend to exclude others on any grounds, but somewhere along the way we lose that natural ability we had as kids to see the world in glorious technicolour and instead the lines become muddied and we end up excluding those that need included most of all.

We go from complete inclusion to integration to complete segregation. Why now do we have to battle so hard to go back the way and rediscover that natural instinct we had as children. Maybe it’s time we all awaken our inner child and make sure everyone can join in.

The solution is simple. Ask what it would take to include the person, not just so they are present but so they are fully included and participating, it may need some creativity and the eyes of a child but the entire experience will be richer for it. It also means that one of the legacies we leave our children will be to NEVER lose the ability to see the world in technicolour.

Book review – Chromosome Kids Like Me by Annette Fournier

One of the joys of having a child with a rare genetic condition, (believe me there actually are quite a lot of them) is connecting with the other families who also walk the same path as you. These connections deepen over time and they become extended family members, many of whom you’ve never actually met beyond a video call.

Earlier this year one of our Inv dup del 8p family members Annette, after months of searching and failing, to find a a book to explain rare genetic conditions to her daughter Maya’s inclusion class, decided to write one herself.

The result is a book which is both catchy with its rhyming story and funny as it compares genetic disorders to pairs of socks. Not only does it explain in child friendly, yet still scientific terms what chromosome disorders are, it also promotes inclusion and acceptance from other children, and explains how children with a genetic condition may need a little extra help to play and get involved. It’s an important message delivered in a sweet and uplifting way.

The second half of the book is the same information, with graphics in adult friendly language so the whole family or indeed classroom can get all the information needed to understand.

Reading the book can help raise questions and open group discussions about what these conditions mean for each individual child or affected person, and also that really they’re no different to their neuro-typical peers they just wear socks of a different design. Wouldn’t the world be a boring place if we all wore the same socks?

The best bit is that it was also reviewed by Dr Volkan Okur, a geneticist from Columbia University in the USA meaning the information is also completely correct and scientifically accurate.

I’ll admit that I was a crying mess when I read the book and that was just after reading that it was dedicated to the 8p family. I have my copy and can’t wait to use it to explain chromosome disorders to my younger children. They are still a little young at the moment being 3 and 1 but I’m glad I now have this resource when the questions come.

This book should be available in all classrooms, libraries and youth groups whether they have someone in the class with a rare genetic diagnosis or not. You never know when you will have the pleasure of meeting someone with a rare genetic condition.

The book is available in both print and digital format on Amazon using this link

Chromosome Kids Like Me

(this is not an affiliate link I receive nothing for promoting this book other than the satisfaction that more people understand and are aware of rare genetic conditions.)