The International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) is an internationally recognised framework for children and youth derived from the ICF aimed specifically at children and young people up to the age of 17.

It is designed ‘to record the characteristics of the developing child and the influence of its surrounding environment.’ (World Health Organisation, 2007)

This means that health and function are emphasised, and disability or difficulties with function are viewed simply as part of the overall health spectrum.

The focus is balanced between what children and young people are able to do as well as what they have difficulty with.

The overall model is below:

The health conditon is generally considered the child’s diagnosis – this could be ‘asthma’ equally it could be ‘cerebral palsy’.

Body structures and functions relate to the health condition and describe what is wrong with the body. This may be wheezing (for asthma) or high muscle tone (for cerebral palsy).

The body functions and structures affect the child’s activity.

Does the child become short of breath? Can the child rise to stand and walk?

What is the child capable of doing?

Activity impacts on the child’s level of participation in everyday activities such as playing, eating, dressing, cycling, going to the shops, involvement in sports etc.

Alongside these factors is the acknowledgement that the child’s environment and individual personal factors influence their development.

Parents, siblings, motivation, cognitive ability, housing, infrastructure of local health and education services, and access to sports and leisure facilities are a few of the environmental and personal factors that may impact on a child’s development in each area.

MAP – Mobility, Activity and Participation is Firefly’s own framework for understanding how products can help children and disabilities.

With the child, their family and the products at the centre of the model, their developmental progress is influenced by mobility, ability and participation.

For example, by using a product to stretch muscles (body functions and structures in the ICF-CY), we may actually improve mobility which we define as a child being able to access their world and gain as much independence as possible.

And of course, products which move will encourage mobility too!

A product might encourage a child to develop hand function, concentration or communication (activities in the ICF-CY).

We have termed this ability, which we define as improving physical, cognitive and social development.

Similarly to the ICF-CY, we have defined participation as being able to experience as many activities as possible.

Download the full International Classification of Functioning, Disability and Health – Children & Youth Version

Sebastian’s first flight was a short jaunt from London to Zurich. From the beginning he was an easy flier.

We wanted to try it out before flying to Cairo but nothing could prepare us for all the doctors on board being summoned to our seats to see if we needed help for Sebastian who sounded like he was having trouble breathing due to his strider and strained cry.

All of this before asking if we needed assistance!

After that first long haul flight there were many more, some on my own.

A mom on her own traveling with an infant always gets plenty of positive attention as the flight attendants were nearby to help as needed.

Of course I was protective and rarely let someone hold him since he needed a bit more support than your typical baby.

Nursing helped stopped a lot of tears and unwanted doctors showing up at our seats during later flights too.

As a baby we used a carrier to travel with Sebastian and thankfully we lived in Cairo for his first two years where a car seat was not required in taxis and when we travelled elsewhere it was by train or plane.

Sebastian’s reflux caused him extreme unhappiness whenever in a car seat since his head control wasn’t strong enough to sit up straight.

This meant he wasn’t ready for a stroller for some time either which made travelling easier, one less piece of equipment to fold and lug aroud.

Though once he was eating solids he needed to be upright and a stroller was used as a stand-in for a high chair since he couldn’t sit up in the simple restaurant highchairs.

We did lose a wheel on his stroller on a flight from Cairo to Dubai once and had to spend a day shopping for a new stroller which was only partially reimbursed.

But one can only argue with Egyptian Air officials for so long.

Fast forward to school age when Sebastian is outgrowing his carrier, stroller, and high chair but still needs support for all daily activities.

Sebastian got his Red Racer just before his 3rd birthday. When we chose the Zippie Iris with tilt we chose a model that would break down (into pieces for easy travel) as well as withstand a rougher terrain.

We wanted to be able to take it hiking as well as into a car and onto a plane.

Our first trip by plane with the Red Racer (that’s what we call Sebastian’s wheelchair) was from Toronto to London, non-stop. I write extensively about our trip here, but will aim to summarize with a few basic tips below.

Travelling with a wheelchair:

1. Break it down as small as possible. Put all of the removable parts into one or two large Ikea shopping bags. This will include footplates, head rest, seat back and bottom. I later learned we could have also removed our wheels, but I don’t think it’s necessary. Take the Ikea bag on board and the flight attendant will store it for you.

2. Fold anything down which doesn’t detach, for us it was the back and handle bars.

3. Lock moveable pieces in place. I used plastic locking strips to hold the back bars from moving from the base of the chair. This did prove to be an issue on landing when the flight attendants had to find something to cut them off due to restrictions for such items like scissors on board.

4. Attach a laminated photo on card stock of your child in the wheelchair with a very short hello message.

This humanizes the chair and reminds those moving it that it is an important piece of equipment which allows the user independence and the ability to do simple activities for daily living.

Two men who transported Sebastian’s chair below the plane thanked me for attaching the note.

5. The chair base will be waiting for you just as a stroller would as soon as you disembark. We chose to be the last off so we had space to put the chair back together as well as remove the car seat from the plane.

6. Car seat: if your child cannot sit up independently as Sebastian cannot, a car seat is a must for the plane.

It must be airline approved and will have a sticker somewhere on it that says so. Airlines do not approve any other seating.

Depending on the airline and the size of the seats it can be very tricky to get in but not impossible!

I recommend bringing a very simple/compact car seat style. Obviously the weight and size of your child will also come into play.

Sebastian still fits in a forward facing car seat.

Many of them hold up to 65/70lbs. Sebastian is nowhere near that. Even at almost 6 years old.

7. Accessories: Bring a small, foldable stroller if your child fits in one for places you may have issues with accessibility.

(We were also travelling with a baby so we could take it on board for her free of charge. Otherwise you check it with your luggage.) This was necessary for us when travelling in London.

When Sebastian was in his wheelchair we needed to take buses everywhere. This added a lot of time to our trips.

For tube and even train travel, we found it easier to bring his stroller, though next time that won’t be an option because he’s grown out of it.

We also have a new hiking carrier ready to try out for really off-road travel. We also bring noise cancelling earphones for underground travel and airplane take off.

Travelling with medicine by plane:

Sebastian also has epilepsy so we need to travel with his regular medication as well as emergency medication should he have a seizure lasting more than 5 minutes.

If you are travelling with any kind of medication, make sure you get a form from the airline for your doctor to fill out which states the needs of your child, including physical, nutritional, and medical.

This will make any accommodation requests possible. It is also wise to have your child’s specialty doctor, such as a neurologist, to draft and sign a letter in regards to travelling with medication, listing each in the letter.

With a major air travel experience under our belt we decided next to go on a road trip into Quebec from Toronto.

This time we also had the added task of making sure there were accommodations for Sebastian’s G-tube along the way as well as fully/partially accessible places to stay, eat, and tour.

We hired a mini-van for the drive and found using the wheelchair was very accessible throughout Quebec.

Though we still used to stroller for hotter, city explorations, the metro in Montreal and around the walled area of Quebec City. When you have wheels, you are always looking for ramps and disappointed to see stairs.

Traveling with a G-tube

1. Contact accommodation to find out if there is a small fridge in the room or if we can have access to the main fridge (such as when staying in a bed and breakfast or guest house versus a hotel).

We also chose to stay in short-term apartment accommodation (Airbnb rentals) and wanted to be able to make dinner or get take out and eat where we were staying.

This made a huge difference in ease of making sure we could prepare Sebastian’s food and formula for eating and for his tube feedings as well as have the ability to clean everything with ease.

2. Have a day pack with everything needed for a meal/tube feed on the go. Including a small jar of dish soap for rinsing feeding bags.

We have cleaned Sebastian’s bag in many restaurants while on the road.

And we’ve also tossed a few without reusing them because it was just easier or more sanitary.

We also have a travel bag with cold packs in it and a thermos for keeping food warm. I purchased a small, plastic, portable food masher to enable us to mash up food when out to eat so he can eat from the menu as well. He had a lot of spaghetti!

3.We haven’t experienced travel by plane with the tube yet so I can’t say but I definitely plan to notify the airline to find out what they allow in regards to liquids, batteries in his pump, etc.

I will get the doctor’s note to cover everything he needs. Just to be safe.

My husband and I are world travellers.

We met on a remote island off Malaysia. We have travelled in many countries and lived in half as many.

We have a strong desire to travel and expose our children to the world and a variety of diverse cultures, places, and experiences. Living abroad is no longer realistic due to Sebastian’s current educational, physical and health needs.

Travelling abroad is complicated. But it is not impossible. We want our son to be a part of the world around him. He can only do that if we take him. And take him, we will.

Next stop: Belfast.

For whatever reason we choose to have a family, I can guarantee that nine months of it will be spent (probably mainly by women but men too) imagining.

Dreaming up little scenarios of your soon to be born child, what they will look like, what their little personalities will be like and getting giddy about all the adventures this new family will travel.

It’s like a glossy snapshot, idealised in your head, eager for it to be born into reality.

But what if that image doesn’t come true?

What if the change to your life is so traumatic and violent that it knocks you sideways?

For some families this is their reality. Some people, for whatever reason, go on to find that they are now parents to a child with a disability, labeled by society to have special needs.

Sometimes the diagnosis comes at birth. Sometimes it happens weeks or months later. And sadly, sometimes, it can happen to a child that was once living an ordinary life.

You suddenly find yourself in a very dark place.

A lonely, unknown path and it can be extremely daunting. A path I found myself traveling having delivered my son Zack who was starved of oxygen at birth for eighteen minutes.

This eighteen minutes resulted in my partner and I coming home with a baby that would need full time care for the rest of his life. Yet here I am four years later no longer afraid, no longer alone and with a new perspective on life that perhaps I would never have gained having lived my imagined life.

And this is what I know so far.

1. Fear and grief

That’s what you probably feel at first, fear. Fear of the unknown. Fear of how you will cope and fear of your new life.

 

It’s a scary time. You probably think why me, why my child? Life isn’t meant to happen like this.

For me it felt like someone had thrown me in a dark room shut the door and said there you go, find your way back to a normal existence.

And you can find normality, it’s very different to how you imagined, it takes time, but it is there.

Alongside all the rush of emotions I felt was also grief. Remember that picture that ran through my head for nine (well seven months, Zack was also premature) it had been destroyed.

The child I imagined no longer existed and for that you have to allow yourself to grieve. The very best thing I did was to let myself feel loss for the child that could have been which perhaps (and it took time) allowed me to accept fully my wonderful son I have today.

2. Abandonment and support

Along with fear comes an overwhelming sense that the situation has happened to you and you alone.

And in a need to quantify your emotions you start to search for others in your situation. First to find hope, to discover other stories like your own that give you a glimmer of a happy ending.

Then when you do find them, you discover your tribe. A group of people that you probably didn’t know existed before but they are there. The ones that have walked your road, are the branches you cling on to because they are the oracle, the people that have answers to things that may baffle you, worry you or quite frankly scare you half to death. Then you find the other new ones, the people like you, and you can at at last speak freely knowing that they just get it.

The place that I found my tribe was the fabulous www.specialkidsintheuk.org

To put it bluntly, they got me through the first year.

Slowly I found in my own local area there were other parents in my situation the one’s that really did understand. I avoided other baby groups like the plague.

To be honest I’m not one for baby meet ups and if that’s what you like then go for it. But I knew that taking my not sitting, not eating baby to a session with lots of crawling, babbling bundles of joy would do me or Zack no good at all.

For us it would merely shine a spotlight on the differences and what I needed at that time was to cocoon the two of us.

So whatever helps you, go out and find that support. Whether it’s online or at a community baby group, find them and stick close by, they will be there in your darkest hours and share in your moments of joy.

3. Team building

There are great doctors, there are good doctors and there are not so great doctors. At first I thought being a medical professional in whatever field from paediatrics, speech and language to physiotherapy, that they knew my son best.

 

Looking back I now know they didn’t. I did. I was the expert. You will probably have all sorts of terminology thrown at you.

You go home and google it and then that magnifies your already bubbling terror tenfold. Don’t google.

Trust your instincts. Find the professionals that you know you can work with. You need to build your team, we have one, it’s called Team Zack, (original isn’t it?)

You need to trust the people that have the medical expertise but ultimately you are the one in charge. My son has cerebral palsy, he is visually impaired, he can’t eat so has a Mic-Key button, he is non-mobile.

I was told what his life was likely to be like and yes on paper it is as the good doctors suggested.

What they don’t mention is the amazing things my son has accomplished. How he has learnt to communicate with us, his unusual and sometimes dark sense of humour and his ever increasing ability to surprise me.

So yes, medially they have training and experience but you have the inside knowledge. It might not seem like it at the beginning but that gut instinct is your strongest team player. Make sure it’s always front and centre.

4. Therapy and a bit of acceptance

Aaaaaah therapy or the immediate search for a cure all. Like the googling of medical terminology another thing, that quite naturally you may try to do, is find some form of treatment or therapy that will eventually fix your child.

Sadly out in the big world wide web there are, I think, people that will quite happily take your money in return for promising massive changes to a severely disabled child.

For some parents it can take some time to accept the situation.

Everyone deals with things differently.

 

For myself and my partner Dan it was pretty quick that we accepted our path in life. I think once you accept that you can’t fix your child it gives you a clearer outlook on life. At the start you are overshadowed by naturally wanting to make things better, like any parent would want to do.

And please, do not think that I am suggesting you give up (more on that later), I am not, I just think it is easier to move forward if you are able to accept the situation within which you live.

But be kind to yourself. It can take a long time, it can be quick, but it will happen.

So do your research. I am a big advocate for therapy. I tried a couple of different places in the beginning and have now finally found one that seems to encompass the three major areas that my son needs encouragement with, that being physiotherapy, speech and language and independence.

The therapy Zack undertakes is conductive education at the fabulous Legacy Rainbow House.

5. Hope

My biggest piece of advice to parents would be, never give up.

 

Don’t lie down. Don’t give up on your child. You are their voice, their advocate and the means by which they will experience the world and be accepted into society.

Despite being told my child will be and I quote seriously disabled (this was said to me by a consultant twice in one sentence just in case I hadn’t realised) I made every effort with Zack and still do to help him make sense of his world.

Memory 1

We are sitting in a bright room around a long rectangle table. My mom is on one side of me and my husband, Ali, is on the other. I’ve been in a room like this before. Where doctors take you to tell you their news in private. The last time was when my brother, Josh, died. This time there was a big file on the table in front of our doctor. 

 

A file that large for a baby so young. My baby. He probably talked about the notes in the file. I don’t remember.

I only remember the words ‘cerebral palsy’.

We walked out, arms around each other. Shocked. Almost unfeeling.

We said nothing but went to the sink to wash our hands again before going into the room where our son was sleeping, still hooked up to machines, though far fewer than in the beginning.

He was moving from the NICU to the SCIBU (Special Care Intensive Baby Unit).

A graduation of sorts. A milestone not found in your ‘What to Expect when You’re Expecting’ bible.

Memory 2

It is dark. Ali and I are sitting on the bunk next to Sebastian’s cot in the SCIBU. We are facing each other. I’m imagining a severely disabled child in a huge, oversized wheelchair.

 

An image likely taken from some movie or ad. Not from a real life reference. Because I didn’t know anyone in a wheelchair. I didn’t know anyone with cerebral palsy. We are looking at each other.

He says incredulously ‘Cerebral palsy? What does they even mean?’ We embrace and both start crying. ‘I don’t know,’ I say, with that image in my mind. ‘I don’t know.’

Although we knew before leaving the hospital Sebastian may have cerebral palsy, we didn’t have an official diagnosis until he was 3 months old.

At 5 months old we had the specific diagnosis of dystonic CP. At 10 months old we told the world about it. That was our first step towards acceptance.

 

I’m not one to routinely dole out advice. But I will tell you a few things that work for us. Keep us sane, happy, and in love. With ourselves, each other and our family.

–Take time to grieve. Know that it can come in waves. It’s OK. Things are not what you imagined they would be. It will take time. But don’t stay here too long. Help each other move forward.

–Have a sense of humour. At least one of you needs it. For us, it is my husband. He makes me laugh, even when I don’t want to. He finds the humour in a situation that doesn’t seem to have one. Sometimes it’s for me.

But really, I think it’s mostly for him.

–Listen to each other. Whether it’s about a new diagnosis (there are always more after the first one), how your day went, or even the score of the basketball game.

Being available to listen is huge. Whether it’s a five-minute phone call at work to vent or a twenty-minute discussion after the kids are in bed about something happening at school or in the office, or wherever.

It validates your feelings and supports your team effort at tackling anything and everything.

–Go out. Together. Alone. With friends. This can be tough. You might not have family or someone else you trust nearby to watch your kiddo while you have a date night.

Until you do, have date night at home. Treat yourselves to takeout and a new movie rental. Have an impromptu dance party in the living room.

Invite friends over after the kids are in bed.  Making sure you both get out for ‘you’ time is huge too.

However often repeated, it’s very true: if you don’t take care of yourself, how will you take care of your child?

–Have an outlet. Whether it’s writing or playing basketball. Watching movies, comedy sitcoms, or sports games. Sewing quilts or cardio with a punching bag. Do something to take a break from your reality. Enhance your reality. Find a way to channel your emotions. Good and bad. Happy and sad.

–Go on an adventure. Or a holiday. If the funds aren’t there to get out of town then explore your city or take a day trip.

It might take some extra planning depending on your child’s needs, but it will be worth it.

–Talk to other families with children whose diagnoses are similar to your child’s. Share that information with each other. Some of my closest friends are those I’ve only met once or online who have first born sons with similar birth stories and diagnoses. In the early days, it saved me. And I’m pretty sure that saved my husband.

–Acceptance. It’s possible you won’t get there together. But it’s important to get there. It’s the only way to move forward.

 

Our son has mixed/dystonic cerebral palsy. It affects his entire body.

Severely.

He cannot walk or talk. He will always have cerebral palsy. Because of cerebral palsy he has epilepsy and reflux.

More recently his hips are moving out of place. He also has a g-tube and takes several medications. Sebastian is five and a half. He loves his little sister and laughs at her all the time because she is very silly.

He wants a pet dog and loves reading books and playing Go Fish with his family.

He loves dance parties and prefers speed to caution when in his Red Racer (wheelchair).

He has his dad’s sense of humour and my sense of adventure.

 

He’s an awesome big brother. He’s learning how to go potty on his special toilet which encourages his little sister to do it too.

He has inch-stones and milestones in his own time.

We love him fiercely. We accept him for who he is and we include him in everything. Are there modifications? Yes. But we still go places and enjoy life.

We make it happen. One day at a time.

 

Remember you are not alone

When relationships change, whether it be with a spouse, parent, sibling, best friend or co-worker you often feel alone, beside yourself without the support system you once knew – the support system you expected would always be there.

You may feel like you have no one to turn to, but you are stronger than feel and smarter than you realize.

The changes in relationships wasn’t about you or your child with special needs.

It was about those people in your life who could not make the transition with you into the life filled with disabilities, it was foreign to them. They didn’t know what to say or what to do, so they sped off into the sunset.

This is so common and you must remember you are never alone in those feelings. It is okay to grieve the loss of relationships that existed prior to your life with a child who has special needs. Take time to take a deep breath and keep going.

Be honest

Family members or friends may not know what to do around a child with special needs. Don’t be afraid to be honest and tell them I can’t attend a birthday party because of our child’s sensory challenges, or go to a large event due to your child being medically fragile and more susceptible to germs and illness.

Don’t be afraid that you’ll offend those around you with honesty. That is a great teaching tool for the relationships in your life and it will help others learn to understand they need to support you in different ways than before.

Focusing on your child

Sometimes you just can’t change anyone but yourself.

So what grandma refuses to speak to you anymore because she wishes you’d just give your child with special needs away for adoption? Your best friend insists your child intentionally hit her and doesn’t understand the term “spastic movements.”

You will spend more of your energy on trying to get those around you to understand than caring for your child who really needs you.

With time they might join the bandwagon of support, but if they don’t put your energy where it’s most needed… on that child who needs every ounce of your tender-loving care.

Making new connections

You might feel like the world is over as you know it. In some respects it is, but the good news is good things await you on the horizon.

New people will inevitably come into your life. I think it’s rather planned that way. You might strike up a conversation with a stranger in the grocery store who turns out to be a speech therapist that you just love, or you’ll see a kind person at the pharmacy who notices you have a child similar to theirs and you’ll be best friends for the next twenty years.

Sometimes you just shouldn’t run after the people who walked out of your life, it leaves room for some beautiful new relationships to enter.

Spreading Joy

Feeling down because you no longer have close knit friendships any longer?

It’s okay sometimes the best pick-me up is spreading joy. It can be the smallest of good intentions.

Don’t let the relationships that have changed in your life dull your sparkle. You have a child with special needs that is counting on you. Donate a piece of equipment that no longer fits your child to someone in need or  give the handful of change sitting in your car to a homeless man on the street.

Remind yourself that you are worthy of being loved and receiving love just as much as your child with special needs is.

Finding peace

A part of your heart may always long for your child’s grandparents to accept your child with special needs.

You may wonder how you can force them to participate in your life and the life of your child with special needs. Unfortunately there is nothing you can really do if a person chose not to be a part of your life – especially as a result of having a child with special needs.

You must find peace within yourself, to know that you did all you could and you have to march forward with or without those who were once in your life.

Living well

They say the best revenge is often living well. Don’t let others know they’ve gotten you down.

Go about your life the best you can, they’ll either join you or they won’t. But old relationships have a unhealthy way of bringing you down.

You might reminisce about all the good times, the close knit bond you had with your closest friends… make them only wish they stuck around in your life!

Finding a new normal

Life is inevitably full of new challenges, endless hardships and difficult days when you have a child with special needs.

Finding a new normal can help with the adjustment of new relationships and putting to bed the previous relationships that no longer exist. Incorporate relationship changes in the overhaul that is now your life.

You’ll find that sometimes instead of needing your ten closest friends at a party that you only need just one person to be that solid rock for you.

Strength in partnership

Don’t forget to keep your spouse or partner close to you always.

Divorce rates are high and common amongst families facing special need challenges. Make sure that you focus on each other’s pains, take time to talk about the joys, your dreams for each other and your child with special needs. Feel like you’re on the same page with doctors, specialists, therapists, and care providers that are in your child’s life. 

Connect beyond just being married or in a relationship with your partner. You both need to be the strongest team you can be – it’s going to be a long hard ride and that will be your sidekick through all the good and the bad bumps in the journey.

Make new goals

When relationships dissolve it often helps to set new goals. Seek out a parental support group that includes similar special needs to your own child. 

Find a common bond with new people. If you have a relationship that is hanging on the edge that you feel may be salvageable try extending the olive branch one more time.  Make it your goal to try even if you fail you can say you gave it your all. 

Challenge yourself to talk to the grocery checker about your child with special needs when they ask who all the pudding you are buying is for. 

You never know that person might just have a family member with special needs and you’ve made an instant new friend.

Relationships can be complicated regardless of having a child with special needs. When long standing relationships dissolve it’s painful, but not necessarily a reflection of anything you did wrong. Go easy on yourself and know that new people and new connections could just be a heartbeat away.