The Inclusive Books Every Child Should Know

We love when story books bring the family together. The whole crew settles down, relaxes and spends some quiet time together getting lost in the magic of Dr Seuss or Roald Dahl.

We also love it when story books are inclusive. It’s important that children (and adults, for that matter) understand disabilities and don’t see them as strange or unusual.

Not that every protagonist needs to have a disability – it’s usually enough that disabilities and diversity are visible, even in the background, and that they’re seen as part of everyday life.

So on this page we are starting to compile the ultimate list of inclusive books for children.

Disabilites take centre stage in some, in others they’re just incidental, but we think they can help all children to understand and accept their own abilities and those of others:

A

 

B

 

C

 

D

 

E

 

F

 

G

 

H

 

I

 

J

 

K

 

L

 

M

 

N

 

P

 

R

 

S

 

T

 

V

 

W

 

Z

10 Things You Didn’t Know About Special Needs Dads

For the first six months of his life my wife and I were blissfully unaware that anything was wrong.

He had all the normal tests that babies have and everything was as it should be.

Life couldn’t get much better. I was already dreaming of all his future achievements….things haven’t panned out as I hoped and dreamt.

In-fact they’re just about as far removed as they could be from those early dream filled days.

In September 2010, with our little boy fast approaching his 2nd birthday we attended what we thought was going to be just another in a long line of hospital appointments with our son.

This appointment was with a Consultant in Paediatric Genetics and we got the impression we were only there because our Developmental Paediatrician had run out of any other ideas.

What happened that day literally turned our world upside down.

The geneticist, with very little explanation, and in a very matter of fact tone, told us that our son had all the symptoms and characteristics of a child with a rare genetic disorder.

He went on to tell us that there was only a small chance he would ever walk or talk.

Indeed there was only a small chance they would ever be able to find out exactly what this disorder was.

My wife and I left the hospital in a state of absolute devastation, struggling to comprehend exactly what we had just been told.

Looking back, the journey into the unknown world of special needs started long before that day, but it marked a defining moment in my life.

Things will never be the same again for me or my family.

As we approach Father’s Day in June it seems like a good time to share some of the things that make being a special needs Dad, so difficult and so different, but more importantly so special and so rewarding.

10 things…

1. It’s tough on Dads too!

There’s no point glossing over the obvious. Having a profoundly disabled child is hard; it’s hard on the entire family.

Just how hard is difficult convey to anyone who hasn’t been in that position. It’s widely accepted that special needs parents are acutely affected by stress especially around the time of diagnosis.

This stress is often compounded by a sense of grief that results from this loss of one’s initial hopes, dreams and expectations.

The journey can be particularly hard on Dads.

We males tend to bottle things up, we’re less likely to share our worries and stress with friends or loved ones.

I think it comes more naturally to mums to talk about stuff and get involved in things like special needs support groups while us dads continue to keep our heads down.

Pretending instead, that everything is fine so that we can support our family.

Added to this is the overwhelming assumption from society that you’re a man, so you’ll be grand.

All of these can make it a very isolating journey for a special needs dad.

2. Of course I’d change things if I could

I don’t get people who say they wouldn’t change anything.

That doesn’t mean I don’t love my son, I do, more than words can say, but just that I would love to make things better for him.

3. It’s easy to get angry and frustrated

I like to think of myself as a fairly relaxed and chilled out kind of person. However, the last few years have tested this part of my personality to the limit at times.

Whether that’s just from the sheer physical and emotional exhaustion of it all or from the massive sense of injustice that hangs over me.

Injustice in the sense of why us – why our child?

Injustice at how our society treats disabled people, regardless of how advanced and accepting most of society sees them self.

A sense of injustice that I can’t physically be there for my son at all his doctors’ appointments as I’m trying to hold down a job.

I get unbelievably angry with friends and colleagues with healthy children, who, knowing full well what we are going through, continue to complain about how much hard work their kids are or at other times point out how marvellously they are doing or their latest achievement.

Whatever it is, its impossible to not let it get to you at times.

4. Different is our new normal

Nothing prepares you for having a child with special needs, but that’s not an entirely bad thing.

I’ve learnt so much in the five years since my son was born, I feel genuinely privileged to be his dad.

Our lives our unrecognisable now to what they were, and indeed they are unrecognisable from that of our friends who had children around the same time as us.

I sometimes feel like I’ve entered a parallel universe, one that lets me view things in an entirely different light.

If my son has taught me one thing it’s knowing what is important in life. Different certainly isn’t always a bad thing.

5. You just have to go with the flow

Like most dads, I like to think of myself as the organiser, the leader of the pack!

On days out, holidays whatever it happens to be I used to have them sorted long in advance so I knew what to expect, what we needed to do and when we had to be somewhere.

That was before, now I’m just glad if we get out of the house.

As our son gets older he’s getting better, but for several years his severe sensory processing disorders meant that no matter how well we planned something, it could be over before it began.

It probably sounds like a bit of a contradiction to point 3, but having a child with special needs helps get things in perspective.

Now we just take things as they come, if the day goes to plan then brilliant, if not then there’s always another time!

6. It can restore your faith in humanity

No one demonstrates this point more than our youngest son. He was born around the time we received the diagnosis from our geneticist, which in itself was terrifying.

We worried that he too would be affected, but thankfully he wasn’t and he’s now doing his bit to restore my faith in human nature.

He has grown up knowing nothing other than his big brother being profoundly disabled.

He’s only three, but ever since he’s been able to walk he’s been looking out for his big brother.

It’s not anything we’ve done, in fact I’d say at first we probably went out of our way to hide our eldest’s problems from him in some misguided attempt at protecting him.

We didn’t have to – as he continues to grow and develop, so does his sense of kindness and love towards his big brother.

It’s a beautiful thing to see and sometimes pretty hard to believe.

Getting to witness this inbuilt human kindness is something very special and something very few will have the privilege of seeing.

7. The awkward silence (and the screaming inside)

I’m sure every special needs dad has been there more times than they care to remember.

On the rare occasions now, when I venture out on a ‘boys night’ with friends who I’ve known all my life, I dread the small talk.

Its almost like everyone is dancing around the subject. But when it does come, I just want to scream.

Friend – ‘How’s he doing?’

Me – ‘Brilliant, in his own wee way…we’re really pleased with how he’s coming on.’

Friend – ‘Oh right, brilliant. So has he started walking and stuff then.’

Me – ‘No, no, we’ve managed to get him to stand for a few seconds without holding him’.

Then it happens, the awkward silence, followed by the dawning realisation on their face that they have absolutely no idea what is going on in my life or what it means to have a disabled child.

Friend ‘Ah, ok that’s good he’s doing well then, my six month old is standing on his own too, another beer then….’

8. It’s not true, you don’t get used to no sleep

I have no idea who came up with this nonsensical idea that parents get used to living with no sleep.

I can only guess it was someone who had a child that maybe didn’t sleep that well for the first twelve weeks of their life.

Tough as that may be and yes you probably do get by on very little sleep over a short period like that, try doing it over many years…

…with no end in sight.

Add to that, the fact your child isn’t a 10lb new born that you can carry around in one hand, they are a 2 stone five year old, with low tone meaning they have no way of supporting them self or of taking their own weight when they are up all night screaming in agony with something associated with their condition.

Further still, your child is five, so people in work or elsewhere don’t really go easy on you like they would if they knew you had a new born in the house.

So the next time you see a special needs parent struggling or moaning about being tired, please don’t say something daft like ‘oh yeah we had that when wee x was a baby…’

9. It’s a love like no other

My son has never said a single solitary word to me, neither is he likely to. We will never go to the pub for a pint together, we’ll probably not manage to get to many sporting events together, certainly not in the ways I’d imagined when he was born.

But for all this I love him more than life itself, I think I’m probably over protective of him, but I’ll make no apologies for that.

He cant speak for himself, so that’s down to me, his mum and his little brother.

I’m a dad on a mission and I’ll do everything I can to make sure his life is as good as it can be.

10. I’m one of the lucky ones

Regardless of everything I still think I’m one of the lucky ones.

My little boy brings so much joy and love into our lives, and his smile brightens up the darkest moments.

I know that in his own wee way he’s happy and for me that’s all that matters.

So to you all you special needs Dad’s out there – I salute you!

Laughing at Cerebral Palsy: 5 Comedians with CP

Maysoon Zayid

Maysoon is a Palestinian-American comedian and actor who founded her own comedy festival and self-funds art camps for vulnerable kids.

Jack Carroll

Jack shot to fame aged 14 when he appeared on last year’s series of Britain’s Got Talent, and has gone on to act and write his own book.

Josh Blue

The intensely-likable Josh Blue is an American comedian, artist and sculptor who rose to public attention on another talent show, Last Comic Standing. His second name really is Blue.

Francesca Martinez

British-based Firefly friends may recognise Francesca from Grange Hill and Ricky Gervais’s Extras amongst the many other places this popular comedian, writer and filmmaker has popped up.

Laurence Clark

Laurence Clark is another multi-talented comedian who combines making people laugh with writing, presenting, acting and campaigning.

Lilo and Stitch Will Teach You Everything You Need to Know About Special Needs Family Participation

Why?

Because this film will teach you things. It knows stuff. Big shiny universal-truth type stuff.

It has two quotes in particular that will teach you everything you need to know about Special Needs Family Participation.

“Ohana means family. Family means no one gets left behind.”

​and this…

“This is my family. I found it all on my own. It’s little and broken but still good, yeah, still good.”

Thanks to our Firefly friend, Stacy, for making recommending this movie.

Now excuse me, I seem to have something in my eye…

15 Amazing Things To Do in Your GoTo Seat

There are so many things children with special needs can see and do when using the GoTo Seat.

It’s sometimes hard to know where to start, but, perhaps our handy hints might help you decide – brought to you by our amazing Firefly Friends:

1. Supermarket Shopping….

The GoTo Seat was designed by Firefly and UK charity, Cerebra, to help mums and dads take their little boys and girls to the supermarket.

No need for a separate wheelchair and running the gauntlet at the supermarket.

2. Flirting with Supermarket Attendants…

Check out this photo (above) of Austin on his first GoTo Seat shopping adventure.

We do believe Austin is super cute and deserved a kiss from the supermarket till attendant…

but we would like to think the GoTo Seat had a part to play in this!

3. Dining…

The GoTo Seat gives children a sense of normality sitting in a ‘big boy/girl chair’ and participating with the rest of the family at meal times.

It’s really discreet and does not, ‘scream’, disability in a public dining area like other adapted chairs on the market.

Parents also take it to restaurants as it gives that extra trunk support required to keep your little one up right and eating happily.

4. Chilling out…

The GoTo Seat is ideal for kids just chilling out at home or at a friend’s house.

It is really portable and a really good short term substitute for a special adapted chair if only for 15 – 30 minutes.

5. Playing…

The GoTo Seat is a great way for kids to sit and play with a parent or a sibling at a kitchen table or play bench.

It opens up a whole new world for special needs children.

6. In a Swing at the Park…

The GoTo Seat can be used in different types of swings but mainly a bucket swing.

For many children it allows them to enjoy playing on the swings and playing at the park for the very first time.

7. Rocking Chair…

The sense of security and extra long straps on the GoTo Seat allows it to fit into most chairs.

You can easily put the GoTo Seat in a rocking chair and let your little one enjoy themselves in front of the TV or just relaxing rocking back and forward.

8. On an Airplane…

Although the GoTo Seat has not been approved by all airlines, some parents have used it on flights and have loved it.

Contact your airline before take-off to get approval.

9. In a Motorised Vehicle…

This looks like so much fun we wanted to try it ourselves.

The GoTo Seat does give special needs kids a sense of independence and allows them to do things they typically would not be able to do.

10. In the Shopping Mall Play Carts…

We love this so much as it truly allows for so much independence and normality.

11. On a Beach, Summer Seat or Deck Chair…

Coming into the summer months the GoTo Seat can be used on beach chairs and deck chairs due to the length of the straps.

It means mum and dad can allow children to relax and enjoy their holiday knowing that trunk control and head support is available.

12. Participating at Birthday Parties…

For some parents birthdays are a dreaded time as they feel their child is going to stick out in his or her wheelchair.

The GoTo Seat was a revelation for one of our Firefly friends, Gabriel, as it allowed him to sit and participate like everyone else at a birthday party.

13. In a Retro Wagon…

The GoTo Seat fits neatly in this retro wagon and parents have used it out on family walks and on day trips.

Again, with the GoTo Seat being lightweight and multi functional it can be used almost anywhere.

14. In a Bicycle Cart…

We love the sense of freedom the GoTo Seat allows parents and special needs children to experience, we were amazed to see this as some parents have to exclude their children from participating in bicycle rides, this is amazing!

15. On Holidays…

With summer time coming the possibilities are endless with the Firefly GoTo Seat, it can be used at the beach, in restaurants, in the hotel room, in the caravan or motor home, in bicycle trailors or on go karts.

The Cameron family used their GoTo Seat with Seth on their tour of South East Asia, Australia and New Zealand…

16. Amusement and Arcade Rides…

One of the most fun things for any kid to do is enjoy themselves at the fun fair trying out arcade and amusement rides.

But just don’t take our word for it on how the GoTo Seat is making a massive difference to special needs family participation.

Here are some Independent Reviews of the GoTo Seat – Enjoy!

You can buy the GoTo Seat here.

KaraMelissa // Noah’s Miracle // SarahHalstead // Premmeditations // Adapted World // Tough Little Cookies // Was this in the Plan? // Nurturing Noah’s Noggin

How Do You Deal with People Parking Illegally in Disabled Spaces?

Use spaces farther from the door. They might only be a “few yards away” for you, but a few yards can create a huge problem for some people. Those ones farther back are for people who are more mobile. Use them.

If the only available spots are disabled ones, then the car park is full. Kindly try elsewhere.

“Just unloading” or stopping “just a few minutes”, aren’t excuses either – you wouldn’t inconvenience people by stopping in the middle of the road so don’t do it here.

And if you still park illegally, just pray you don’t run into one of our super mums.

“Ugh. . .I just dealt with this last week.  I took Emmy to a kids drum circle.

The parking was horrible and they only had one disabled spot which was filled with a car parked illegally to unload.

They had their hazards on, so I knew immediately it was not someone disabled.

I pulled right up and waited for them to return.

When they did, I told them I needed the spot and it wasn’t cool for him to have parked there. 

He was very apologetic and said he wasn’t parking there, but just unloading.

I told him it was a major inconvenience and to please reconsider doing that again in the future as it wasn’t fair to my child.

I can only hope he thinks twice before doing so again.”

Dawn Hamilton, Emerson’s mum (www.EmmyIsAStar.blogspot.com)

“Each year I see a growing number of illegal handicapped parking offenders.

These are the cars that do not possess either a hanging handicapped tag or handicapped license plate.

I found these really great parking ticket/reminders from Braun Ability that I use and leave on cars that are illegally parked.

Most families don’t have time to sit there and call the police to ticket and remove someone from a spot.

There are also great app called the parking mobility app, which allows you to take a picture of an offender and send it to local authorities.

That seems to be growing in popularity.”

Stacy Warden, Noah’s mum (www.NoahsMiracle.com)

“If they are in the car I remind them they can’t park there.

If they refuse to move, I take a photo of their car and share it on social networks.

For those not in the car, I leave them a note under their so shield wiper.”

Kara Melissa Sharp, Seb’s mum (www.KaraMelissa.wordpress.com)

“I have been known to leave notes on windshields saying, ‘You shouldn’t be parking in this spot if you do not have a decal.’

But it’s important to remember that you can’t tell by looking whether or not a person is disabled.”

Ellen Seidman, Max’s mum (www.LoveThatMax.com)

“If I catch them I speak to them about it, or I will leave a note on the car. At my kid’s school I spoke to the principal.”

Hayley Young, Henry’s mum

Welcome to Holland

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans.

The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.

It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say.

“What do you mean Holland?? I signed up for Italy!

I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.

They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It’s just a different place.

So you must go out and buy new guide books.

And you must learn a whole new language.

And you will meet a whole new group of people you would never have met.

It’s just a different place.

It’s slower-paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.

Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

Emily Perl Kingsley

 

Progress on New Supermarket Trolleys for Kids with Disabilities

Supermum Stacie recently hit the airwaves on BBC Radio 4 to raise more awareness.

You can hear the feature here.

It was really nice to see the difference our trolley seat will make to special needs mums and dads in the supermarkets.

So watch this space!

Big thanks to Sainsbury’s for starting to address the issue and helping to promote special needs family participation.

If you would like to know more about Stacie Lewis check out her facebook here.

International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

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