My children are not wheelchair bound.

My children are unbound by unique sets of wheels, finding the freedom to be flown along, wind brushing hair aside and hearts flooded with the thrill of speed.

My children are not wheelchair bound.

My children happen to use wheelchairs, simple tools which increase their mobility, advance their participation, and improve the practicality of them being included.

My children are not wheelchair bound.

My children are given the opportunity to travel to a thousand places without rising from their seat or taking a single step.

My children are not wheelchair bound.

My children have found a faithful friend in the wheels that carry them from place to place, no matter how they are feeling or what they are physically capable of that day.

My children are not wheelchair bound.

My children are sped through our home, chasing their siblings amidst eruptions of the pure laughter of shared experience.

My children are not wheelchair bound.

My children sit in wheelchairs that allow them to join the circle around our dinner table, sharing in the stories from a day lived well.

My children are not wheelchair bound.

My children are equipped with personal, wheeled thrones, boldly catching attention and drawing in the curiosity of those around them, allowing stories of diversity and kindness to be shared.

My children are not wheelchair bound.

My children are athletes, seated between wheels that have rocketed around baseball diamonds, squealed across basketball courts, and flown around obstacle courses.

My children are not wheelchair bound.

My children’s wheelchairs are extensions of the wonderful humans they already are, setting them apart and adding beautiful chapters to their stories.

My children are not wheelchair bound.

My children are children—children who play and cry, laugh and learn, love and need to be loved just like any other children—all while sitting in chairs made just for them.

My children are not wheelchair bound.

My children are wheelchair enabled.

My children are wheelchair enhanced.

My children are wheelchair empowered.

My children are wheelchair enriched.

My children are wheelchair emboldened.

My children are wheelchair unbound.


Cerebral palsy. A term that means so much and yet so little. An umbrella term for a condition that affects 1 in 400 babies born in the UK.

A term that affects so many yet, so little is known about. It is a diagnosis that covers several neurological conditions but for me, it is a diagnosis that means nothing.

‘Cerebrum paralysis’ is what the term comes from. Cerebrum is a principal part of the brain that controls a variety of functions including sensory (seeing, hearing and feeling), co-ordination, and voluntary movement.

Paralysis is the loss of ability to move.

So, in essence, my child’s brain is paralysed.

The cause for Alfie was a variety of things: twin to twin transfusion syndrome, prematurity, lack of oxygen and negligent care in the weeks that followed his birth.

This huge variety has meant Alfie’s cerebral palsy is classed a quadriplegic. ‘

Quad’ means four, so often people assume that four limbs are affected, but in reality, his whole body has been affected.

His brain has been so damaged that he cannot control any part of his body, including his organs.

The label simply doesn’t come close to the disability. No label could come close to explaining Alfie.

When Alfie was diagnosed with cerebral palsy, it wasn’t actually a shock. Having a twin meant we quickly saw the delays Alfie had and the fact that he wasn’t developing very much, if at all, was very apparent.

Quickly Rory was rolling over and, on the move, whereas Alfie still couldn’t even support his own head.

At 8 months, when Alfie was diagnosed with cerebral palsy, the doctor said he “couldn’t predict Alfie’s future, but…” And that ‘but’ has become both encouraging and stifling.

The first few appointments following Alfie’s diagnosis consisted of me asking “what will Alfie’s future be?”

This was generally followed with all of the things he won’t be able to do.

The answer always started with “we can’t predict his future but”: he won’t be able to roll; he won’t be able to crawl; he won’t be able to walk; he won’t be able to feed himself or get himself dressed; he won’t be able to; he won’t be able to; he won’t be able to…

All that I heard was Alfie will not progress beyond the baby in front of me. He will grow in size but not in ability, he will age but not develop.

He will be a new-born in every way physically, yet he was no longer a new-born and never would be again.

Yet, for all the limitations on what Alfie can do and what the future may hold, so much uncertainty also works to our advantage.

The professionals have no clue what Alfie will achieve, and so they give us the worst possible outcomes. Yet Alfie has already begun to surpass them.

He is rolling and developing each day. He is trying to crawl and learning to feed himself. He is truly amazing and a joy to watch.

There is no way to describe the overwhelming pride and emotion that comes from watching Alfie develop and progress.

Each day he learns something new, and each day he continues to try his hardest at everything he does.

His determination and enthusiasm in everything he does mean that there are no limits on what Alfie can achieve.

With our support and love, he has already surpassed the expectations of the professionals, so we no longer ask about what he will be able to do – we let Alfie show us.

Alfie does not let anything hold him back, definitely not his disability, so why should we?

Watching him grow, learn and develop each day just proves that Alfie’s future cannot be predicted.

He may not be able to do everything that others can do, he may take longer to do somethings, but he can do anything he puts his mind to, and we will support him in everything that he wants to do.

We will be his biggest supporters, his advocates.

So, when you see our child in his wheelchair or his walking frame, or any child with cerebral palsy, do not feel sorry for them.

Instead admire them, they have a sense of determination and strength that is inspiring to see.

Alfie tries his hardest at everything he does, he is kind and mischievous, funny and cheeky, he is endearing and loves truly.

Alfie leaves a mark on every person he meets and his future is limitless.

On Paper, It’s So Much Worse…

I guess I’d describe myself as a kind of organised person (ok maybe not as organised as I’d like to be, but not doing too bad).

I love a list, I like to keep documents in order, and I work for a stationery company so it’s quite a good match that I like having things written down on paper.

Well, most things.

I guess the majority of people, at some point in their lives, have received bad news in the post.

It might have been your latest council tax bill, your overdraft statement, or notification that you have picked up a parking fine; seeing it in black and white is what makes it official, no matter how tempting it might be to hide it in amongst the mountains of junk mail that also come through the door.

The thing that I have found to be really difficult to digest though is seeing Heidi’s diagnosis in writing.

The first time I read “spastic quadriplegic cerebral palsy, severe global developmental delays, epilepsy, hearing impairments, visual impairments…gastrostomy, tracheostomy” it was like a punch to my stomach.

I kept reading it over and over, and each time felt more upset.

It was like a long list of things that were “wrong”, creating a big black cloud that was to hang above us.

I mean, with a list like that, there’s not much hope is there, right?

Wrong! There is so much hope. What the written list doesn’t demonstrate is that Heidi is now a very happy and (generally!) settled 4-year-old.

It doesn’t acknowledge that despite early struggles, she learned to smile at around 15 months old, and will now light up when she sees (yes sees, so that scuppers the visual impairment diagnosis) a familiar face or her favourite toy.

It doesn’t take in to account that she goes to school and is developing all of the time – sure, it’s not at the same level you’d see in other 4-year-olds, but that doesn’t mean it’s any less significant, in fact if anything I think we have learned to celebrate and enjoy every single achievement as we know how hard she has to work to reach them.

I can remember a consultant we met in NICU when Heidi was being cooled.

He was explaining about the brain scans that she would be having, and prepared us for the results – he said that our kiddies will do their own thing; what the results show on paper will not necessarily match up with how a child presents.

This was the biggest piece of advice we could have been given.

Of course, the “wait and see” is such a hard part of HIE, but it also means that there can always be hope.

So, my advice to you (if you want it that is!), is to yes, read the letter, then pop it in a file (preferably one with dividers to keep it in order J), and enjoy your child for what they are – the ups, the downs, and the mediocre bits.

They aren’t their diagnosis, they’re amazing kids, who are so much more than what’s written on the paper.


Our Philosophy of Therapy

For caregivers of children who have special needs, it can be easy to feel that life is consumed by pressing appointments and services.

As a (foster) mom to multiple children with special needs, I certainly feel this way at times.

My days are often packed with trips to hospitals, specialists, physical therapy, occupational therapy, speech therapy, wheelchair clinics, medically complex clinics, bracing clinics, play therapy…the list could go on and on.

As a parent, I want my children to succeed.

I want to know that I do everything I can to support their strengths and strengthen their weaknesses.

If there is anything that could possibly help my children communicate better, function better, or participate better, I want to commit, dig in deep, and give it our all.

However, one of the most important things I have learned as a mom to these special little ones is that we cannot do it all nor is it healthy too.

A few years ago, I remember feeling overwhelmed by the constant wonder of if we should be doing more.

It felt as if for every therapy/treatment/service we began, we would discover a handful more that perhaps we should be doing as well.

Slowly, it felt like life was going to be taken over by every new potential tool that was being offered to us.

I began to realize that if our life became a flurry of non-stop appointments or people coming into our home, we would miss out on a lot of the stillness and spontaneity where so much of life’s beauty, growth, and learning happens.

Over time, I became very selective about what therapies we added.

I researched, talked with professionals and providers, and tuned into my children and what they were needing in order to make the best decision.

I began to notice that some of our greatest “therapy moments” took place in our home, in the midst of our family being together as just us.

I began to no longer see the hours spent at home as less important or as a time that could have been packed with more interventions and therapies.

Rather, I saw my children blooming, engaging in play that was laced with opportunities to learn and practice skills.

We still had a great deal of appointments on our plate, but I made the decision to move all our appointments to only two days a week as often as possible.

Those twos days a week are absolutely crazy, but I know that the other days of the week, we will be able to be home and in our own routine.

During therapy sessions, I take notes, pictures, and ask all the questions I need in order to be equipped to implement therapy strategies in our home.

In a way, I have become every kind of therapist that my children see packed into one person.

Sometimes, I direct our play and activities at home to meet therapy goals.

But other times, I rest in the fact that the relationships, memories, and emotional safety that my children gain from less-structured times at home are invaluable.

As a caregiver, do not ever feel guilty about turning down as many therapies and supports as you need to in order to protect the child’s free time as well as your own sanity.

Remember that time away from structured interventions is just as vital (perhaps even more so) for growth and development.

Living with Violent Behaviours Each Day

It’s not something that’s often readily discussed, but sometimes autism and other disabilities can lead to violent behaviour.

Being a dad of two boys on the spectrum, I’ve experienced a whole range of them over the years, but despite my experiences, they’re still no easier to watch happen each day.

With my eldest, Jude, he has always focused his meltdowns towards himself.

Self-harming by hitting, slapping himself, or jumping onto his knees. This was heart-breaking to watch, and luckily over the years with a lot of changes and adaptations to our lives, it has reduced dramatically.

Luckily right now, the meltdowns are few and far between and a lot less intense.

When they do happen he tends to try and sink his nails into your skin, rake as hard as he can, to show you how upset he is. Whilst it’s not very nice to be on the other end of, it’s manageable, and over quickly.

However, for the last 6 months, my younger son, Tommy, has now become increasingly violent.

When having a meltdown he tries as hard as he can to lash out at me or destroy anything he can get his hands on. He’ll turn his back towards me and kick back like a horse.

He’ll throw his arms windmill like and try to hit me as hard as he can. If I block him and he is close enough he’ll try to sink his teeth into me, and bite down with all his might.

If he breaks away from me he’ll kick the walls, windows, throw chairs, or any object he can get his hands on.

His stamina seems everlasting, with no let-up in intensity for at least 30 minutes.

Then, when it’s all over, when the red mist has disappeared, life goes back to normal. For Tommy at least, it’s as if nothing ever happened.

And for that I’m grateful. I’m glad there’s a little hangover for him from that outburst, that he’s able to recover quickly, be completely ok with me again, and get back to enjoying being together.

But sometimes, for parents like me, it’s less straightforward. As I tidy the house, clearing up the carnage, dealing with the broken mirrors, the holes in the wall, the chairs with 3 legs, it can be difficult to just switch back to normal.

Keeping my emotions in check whilst on the receiving end of these behaviours is a real challenge.

Staying calm, not reacting to the provocation, all the while trying to keep my child, myself, and anyone else around you safe.

Dealing with the emotions that stir up inside me before, during, and after these incidents every day, can be mentally and physically exhausting.

Why is he doing this? How can I help him? What can I do to prevent this happening each day? These are just some of the questions that fill my head all day long.

I’m a 38 year-old man, and I flinch from my 7 year-old son, so conditioned have I become to the threat of receiving a wallop at any given moment. It’s not an easy thing to admit.

Surely I should be able to manage and control someone so much smaller than me?

The truth is in that moment, there’s no controlling him.

It can make it hard to enjoy the good times. You have to find a way to not constantly be on edge, searching for triggers, trying to pre-empt and prevent a meltdown.

When it’s over and I survey the broken furniture, see the cuts and bruises I’ve received, it’s a challenge not to be angry, upset, fed up with going through this each day.

The bruises on the skin heal much more quickly than the bruises on the inside.

Each day requires so much planning, and when it goes wrong I can be left feeling like I’ve failed.

I want to go and do the things I know he enjoys, take him to the park, swimming, etc, but also know how hard it is to deal with these behaviours when out in public, or even worse, near a road.

Right now we’re waiting on further assessments, implementing sensory and routine changes to try and help Tommy self-regulate.

To feel like he can control his feeling better, and have a way of getting the same output he’s actively seeking, more safely.

Hopefully, in time these behaviours will reduce, and the clever, cheeky, inquisitive side of him will be much more prominent again.

So for the many families out there who go through this, I just want you to know that, despite it being rarely talked about, you’re not alone.

Living with these behaviours can be tough.

Tough for our loved ones who lose control in that moment, and tough for those of us who want nothing more than to help them calm down and stay safe.

Seek advice, seek help, and know that you’re not alone.

A Friend Named Helen

Helen first popped into our lives back in June 2016 when we received a private message on my son Ryan’s personal Facebook page from her.

Helen reached out with some lovely words of support…  I had always known of Helen as she lived in the same street as my parents and was next door neighbours with my auntie, but I had never met her personally.

Helen is also a special needs parent. She and her partner Ronnie raised a beautiful boy who is also named Ryan.

Like our son, Helen’s son Ryan also has cerebral palsy. She devoted her life to give him the happiest life she could and to show him he was loved endlessly.

Sadly in 2015 and at the age of 21 Helen and Ronnies son Ryan passed away.

I could not even begin to imagine what you both must have went through… I am truly honoured that you have chosen to share your lovely stories and memories of Ryan and all about his funny character with us.

Helen when we first met you, you made us feel welcome it was like we had known you for forever.

The way you and Ronnie took to Ryan blew me away. It was like my son was always supposed to be in both of your lives.

You have spoiled him with kindness and thanks to yourself and Ronnie made opportunities possible for Ryan that we couldn’t have ever done ourselves.

It is no use denying that Ryan adores his alone time every Monday night with yourself and Ronnie.

I also hope the Monday nights spent with Ryan bring you both some comfort too.

We couldn’t be more thankful for your kind family also, taking time out their days to come to visit and build a relationship with him.

I think it sweet how he has built a friendship with Alex over finding Nemo and Mr. Tumble.

How he loves to show off to Danielle and Tricia and how he gives poor Anne into a row if he hasn’t seen her in a while.

I am blessed to have you as a friend because I never thought I would have met somebody who understands our life just as much as you do.

I cannot believe we have been so lucky to have found somebody who we can trust and turn too if we ever have a worry or question because you have walked in the same shoes.

Helen, you are an amazing lady with a heart of pure gold. Thank you for loving our son the way you do.

The Contract We Sign

My son recently had a procedure at the hospital where we needed to be there for an extended amount of time during the day.

We were laughing and chatting it up with his nurse and then the subject of having children came up.

The nurse said she knew she wanted kids but then she gestured to the hospital and said: “but when you have kids, you sign up for this.”

As a nurse, I’m positive she has cared for extremely sick children and she likely has seen children who never get the opportunity to return home. She has seen it all.

I kept thinking about our conversation after we left the hospital, and she’s right. You do. You don’t realize it but you sign up for all of it.

You don’t just sign on for the sleepless nights during the infant years.

You don’t just sign on for wellness visits and milestones met.

You don’t just sign on for the adorable baby babble turning into first words of mama and dada.

You don’t just sign the dotted line for “typical.”

That’s not how it works.

There is an unwritten contract that you don’t even realize you signed the second you have your child. Because you don’t get to choose, you don’t get to predict and plan their life.

There isn’t a multiple choice contract where you pick oral eater or tube fed. Choose to sleep through the night at 6 months or insomnia.

Milestones met right on schedule, delayed, or never met. No choices. We sign up for it all.

We don’t get to decide. But we do have an obligation to our children to step up, show up, and never give up – no matter who they are.

When we had our second son, I had no idea what was ahead of me

I was blissfully unaware that I signed on for “all of it.” He was born with a rare genetic disorder, congenital disorder of glycosylation (PMM2 CDG).

He is almost 6 years old and still has many milestones he has never met. His disorder affects him from head to toe, and he truly will never be “out of the woods” when it comes to the surprises and curveballs we are thrown.

I signed up for all of it.

I signed up to wheelchairs, gait trainers, and standing frames.

I signed on for severe developmental delay.

I signed up for therapy appointments year after year.

I signed on for specialist visits and care management.

I signed up for procedures, surgeries, and hospital stays.

I signed on for a life of advocacy and spreading awareness.

I also signed up for perspective, authentic joy, and unconditional love.

We all do. Every one of us, all of us parents, unknowingly sign up for all of it.

Our son is who he is because of “all of it.” Without “all of it,” there is no him. Of course, I would give anything to take his pain and struggles away.

I would also love to hear him say I love you and countless other things.

I can wish and hope for things for him but I can also love him fiercely for who he is.

And if I knew ahead of time, I wouldn’t hesitate to sign on the dotted line.

10 Gamechangers for Development

Our daughter Isla has a rare chromosome disorder 2q23.1 Microdeletion Syndrome (aka MAND). This causes autism, development delay and epilepsy. 

We are in such a good place now with Isla.

Ten years old seems to be the magic age where everything has come together for us.

No, she hasn’t just become neurotypical all of a sudden. She is still our quirky, sweet girl with absolutely no filter.

She is also developmentally behind. It just seems she has achieved so much lately and hit so many milestones. It is so encouraging!

There are many things that have contributed to Isla’s development over the past 10 years.

I will aim to highlight the game changers from when we were first diagnosed. I have written about things as they have happened along our journey on my website www.simplyisla.com.

I have provided the links for quick reference to each blog post if you are interested in learning more.

  1. Early Intervention

This came in the form of speech therapy for Isla. We started the process at 2 years old and therapy began at around the age of 3.

We attended the Hanen More Than Words course and learned a bit of Makaton Signing.

These were both worthwhile providing us strategies to help cement her learning at home.

Her motor skills didn’t seem too different from a normally developing child in those preschool years and we didn’t really receive help for these until at school.

  1. Moving from Mainstream school to a Satellite Class 

Mainstream schooling wasn’t the best place for Isla to learn. She couldn’t keep up, couldn’t keep still and it wasn’t the right environment for her.

She spent most of the time out of the classroom with her behaviour reflecting her inability to cope.

Moving to a Satellite Class where she felt competent, more included as was structured for children with additional needs was the perfect fit for her.

Her special teachers and aides have really helped her become the girl she is today.

  1. Getting an Assistance Dog

We received our loveable Golden Lab, who had been trained for autism when Isla was 7 years old. He is a tremendous help in letting Isla access the community and walk to school.

He helps her sleep better and is a constant, nonjudgemental companion.

  1. Her Carers

For the past few years, we have had some wonderful students in their last year at school spend time with Isla in our home and take her out on outings.

This has been great at helping Isla with her social skills and teaching her ways of keeping herself occupied.

As well as giving mum a break!

This has been one of the best things I have put in place for Isla and our family.

  1. Medication

Putting Isla on Fluoxetine (an SSRI otherwise known as Prozac) has been quite life changing. We were initially prescribed this for anxiety.

Her fear of ice, for example, was causing her to have breakthrough seizures. As well as helping the anxiety, we noticed her reactive behaviour, resulting in tantrums and crying, became less and less.

As this was a gradual improvement I thought she had just grown out of this behaviour.

However, it became clearly apparent the positive effect her medication was having on Isla’s behaviour when she started growing out of her dosage.

At the beginning of this year, as well as seeing huge separation anxiety, she had become withdrawn, defiant, irritable and started over reacting and crying every day.

I must admit I struggled with the decision to increase her meds as I wanted to believe she didn’t need them to progress.

However, within a few days of increasing her medication, she was a different girl.

We had our happy, engaged, chatty sweetheart back.

  1. Holiday Club

We have some truly special people in our lives.  Isla and some friends are taken on adventures by 2 “school holiday angels”.

Isla would struggle to attend a regular school holiday programme but this makes her feel part of a social group.

It also exposes her to a lot of activities she would not normally do on her own without her peers.

There are many places we can now go after she realises they aren’t so scary after all.

  1. Activities/Therapy

It took me a while to find them but we now have the perfect combination of after-school activities that cater to our kids with additional needs.

Without her knowing it, they are all different types of therapies teaching her new skills while she has fun.

We do art therapy, OT based therapy, Equine (horseriding) therapy and next term we are starting music therapy!

Isla also works with a Neuro-Developmental Therapist and is currently doing a Reflex Stimulation and Inhibition Programme.

She also has OT/physio/speech and language goals at school.

  1. Friends

Isla has lots of friends she has met through her class at school and her activities.

They are caring of one another and nonjudgemental and their friendships are so important to Isla.

She never feels like she is missing out on anything as her friends (along with her carer friends) provide everything she needs.

  1. Family

Isla has awesome sisters that adore her but keep it real.

A father that would do anything for her and reads to her every night and a Nana that is her special person and is like her second mum.

Her extended family are all supportive and accepting of Isla. They have all shaped her into what she is today.

She has also made me become a better person and has taught me so much.

  1. No Devices

This has been a recent but huge developmental leap. We have been device free for 5 weeks now and the changes have been unreal.

She is more enthusiastic about pretty much everything now we don’t have to compete with devices.

She is now participating in the real world rather than a virtual one.


I have been in the world of special needs now for almost 17 years, and I am damn lucky.

Lucky because I was told my son would likely never see his teen years.

I am having to sit and watch a relentless syndrome take everything away from my firstborn son until there is nothing left to take.

I don’t share this with you for sympathy, I share it because I hope some parents can take something from this to help them on their journey through parenthood, regardless of their child’s needs or abilities.

1 – A diagnosis is a help; it will help doctors and professionals give your child the best possible care – a diagnosis does not change your child but your path.

2 – Take a trip with your partner ALONE, as often as you can afford it.

3 – Insist on respite, do not be afraid of the word ‘respite’. Other parents have respite but they call it staying with family – kiddies like ours are too much for our aging parents or too complex for family members- and that is OK.

Look into respite, try it out, see how it goes.

4 – Take family day trips as often as you can. If your complex child cannot handle busy places at peak season or at peak time- go off-peak as often as possible. Your other kids will love it too because they won’t have to queue either.

5 – Do not attempt the beach in the height of Summer, instead find a lake or a woodland to enjoy the good weather with the added bonus of shade.

6 – Laugh when your child does something others would be ‘mortified’ over. It makes a great story in years to come and believe me, you will laugh every time you retell it.

7 – Don’t let guilt sit too heavily on your shoulders; even on the days you feel like you’re not doing enough- trust me, believe me- you are.

8 – You are not going to remember everyone who helps with your child, get a small notebook and write down their names and who they are, it is always handy to write down the ‘vibe’ you get too from that person.

9 times out of 10, your gut instinct is correct!

9 – Every professional you speak to uses the toilet the same way you do-  don’t forget that when you’re speaking to them.

10 – If your child will only eat beans, let them have beans.

11 – If your child has a meltdown or a temper tantrum – it is not the end of the world and your child isn’t the only one to do this; try to remember this (I know it’s hard) and maybe when you’re comfortable enough to be a smart ass – take a bow for your audience.

12 – Good grades are good, however, they don’t ensure your child will grow up to be a decent human being.

Spend time with your child to instill kindness, understanding and all those wonderful attributes which help children grow into decent adults.

13 – Take videos. Snap pictures- ensure you appear in both.

14 – Don’t overly apologise for behaviours that your child cannot help. I still tell people “Ethan isn’t biased or racist, he will hit anyone” and if that person still insists that Ethan won’t hit them as they get closer to him and suddenly he kicks them, I do not apologise.

15 – All screeching isn’t bad. Sometimes it’s all our kiddies have, so get down with it and have a little scream too, it’s good for the soul.

16 – Cry. When you need to cry.

17 – Life isn’t fair. Accept it.

18 – Don’t start that daft debate over breast or bottle with a parent whose child is peg fed, for the love of all that is holy, fed is best- end of the debate.

19 – A special school is often the best thing you can offer your child. These schools cater to your child and their needs – it may not have been in your plan when you envisioned your child’s life but – plans change, get used to it.

20 – Doctors can get sh!t wrong. See point 9.

21- Life is what happens in between the plans we make for our life; try to enjoy it and when it is sh!t, it’s perfectly fine to complain, feel sorry for yourself… but get back up and if you can’t ask someone for a rope to pull you back up x

These are only a few small things I have learned and am still learning living life as Ethan’s mum. I hope some made you laugh and some made you think.