Raising Children with Disabilities: “I Am So Proud of the Big Sister You Are.”

I am thankful that while I love them equally they are so very different from one another.

When we told our little girl she would be getting a baby brother or sister she was really too young yet to understand completely the change that was coming her way.

None of us understood, as we didn’t plan to welcome a child with special needs into our world.

But do you know who has probably handled it better than anyone?

Our little girl.

This is just a little note I’ve put together to our daughter on how I’m feeling about her today and her relationship with her brother.

To Our Daughter,

Proud is not a strong enough word to explain how I feel about you.  

From the day you met your little brother in the hospital, you have been a better big sister than we could have ever dreamed up ourselves.  

While we didn’t know yet the challenges life would bring with that new baby boy, you loved your brother the same.  

You’re still too young, really, to know any different, but soon enough you will ask questions.  

Other children you meet and become friends with will ask questions.  

Just this weekend you led a little girl over to your brother, who was sitting in his Tumbleforms chair in his wagon and you said, “This is my brother.”  

You had the biggest smile on your face, and were so excited to introduce your brother to a new friend.  

As I looked on I admired the simplicity of your statement.  

That’s your brother, and you love him.  

It brings me great joy to see how proud you are of him, and to see you want to share him with others. 

You are his biggest cheerleader and he adores you.  

You help make his world go round.  

You delight in his smiles and giggles as much as we do, and you share in the joy he brings to our family.  

We can all learn a great deal from watching the way you interact with and protect him.  

You don’t see him as, “different”, in any way.  

I am so hopeful that you will grow up with a level of tolerance and compassion unfamiliar to other children your age because of your brother and your big heart.  

I am so proud of the big sister you are. 



Raising Children with Disabilities: Why, “Dreaming Big”, Is Mandatory

Dreaming comes in all different forms and sizes.

While we all of course are dreaming the ultimate dream – complete recovery and healing for our child with special needs – we have so many other dreams that have the potential to be life altering.

We can dream about the invention of a new product that would make it easier for us to travel, for our child to participate with his or her peers, or assist them tasks needed for independent living.

We can dream about new technology that will allow us to hear our child’s voice, digitally enhanced by using their own vocal sounds to create what their voice would actually sound like if they were verbal.

We can dream about a world that never stares at a child with special needs.

We can dream about government resources and insurance benefits not being so hard to access.

We can dream about lots of things and it’s okay to dream big – because dreams can and do happen.

When we dream big we plant the seed of greatness to grow.

We are challenging the universe to put our intentions into play.

Dreamers are never low on hope because they know that anything remains possible.

People might want to try to convince you that dreaming sets us all up for disappointment on the special needs journey, but I tend to think it’s just the opposite.

Dreaming presents us with recognizing there are endless possibilities, sometimes it even encourages us to chase them.

Parents designing equipment that they know that could benefit those with disabilities; parents knocking on the footsteps of Congress dreaming of changes that will allow those with disabilities to be able to change in public restrooms with dignity.

Dreams that we can make this world a better place for our child so they will be safe and supported once we are long gone and or no longer able to care for them.

Dreaming is more than okay.

And we need to hold onto all these dreams.

And then we need to find active ways to try to make these dreams a reality.

And maybe secondary dreams could happen in the process; like watching our child sit for the first time, speak, “Momma!”, form sentences, and then talk non-stop (!), or be able to transition to eating solid foods… dreams are endless.

Don’t give up on them.

It’s healthy to dream.

Children’s Hospice – Another World

At the other end of the long corridor facing us stands a little blonde girl about two years old wearing a white shift dress.

We stare at each other in silence for ages, both mesmerized by the other until she laughs and runs bare footed into one of the rooms nearby.

The spell is broken instantly and in rushes a flood of tears that literally shakes my Mum off her feet.

Tears of anger, horror, fear, hatred even that life has brought us to be standing here at this moment.

A tidal wave of pent up frustration which, up until now, has been managed admirably well for five years but is let loose by the innocent charm of this beautiful little stranger.

Half an hour before, we had all been crying tears of a different sort, ones of joy.

We had taken my daughter to the Hydrotherapy pool next door and for the first time in three years, my Mum had been able to hold her granddaughter helped with the buoyancy of the bath warm water.

They had laughed manically, twirled and splashed and squealed with delight.

The 65 years age gap vanished as both overcame their physical limitations and became equal in the water.

It was a truly magical experience that I will always remember and which without doubt cemented their bond with each other forever.

Back here in the corridor however, the reality has hit home that to access this wonderful facility, we have had to join a club that neither of us dreamt of.

On either side of the corridor are bedrooms each beautifully decorated with cheerful characters, butterflies and castles.

Each shares a large en-suite bathroom and has a view outside onto a peaceful garden.

Each is equipped with state of the art monitoring equipment, special beds, oxygen on tap and emergency alarm call systems.

The larger room on the left is an office where excellent nurses work and part of their role is to look after terminally ill children staying here.

We are stood in a children’s hospice.

We have accessed this special place because my daughter has a life threatening form of epilepsy.

We also need respite now and again and are able to get it here, safe in the knowledge that she is in the best possible care.

When we first visited I felt like a fraud, thankful that my girl was not terminally ill and slightly guilty to be accessing the services.

A year on however and I have learned that as well as this hugely important role, the hospice also offers a fun safe place to play, make new friends and get a break in the company of other special needs families.

Our three generation party of girls still go swimming here and we have now been to parties too, celebrating being members of this special club that we once knew nothing about.

The Hospital of My Dreams

We have recently become residents of Brisbane’s new, state-of-the-art children’s hospital.

There has been a lot of debate about the design and facilities of this new hospital, and this has got me thinking: what do I want in a children’s hospital?

The top priority, of course, is good doctors, nurses and staff – people who care about your child, work with you as part of a team, listen to your opinions as parents and carers (since we do actually know our children best), as well as providing top notch medical care – in a timely fashion.

But what about the hospital itself, what would the hospital of my dreams look like?

Well, I have a few ideas:

Ample and Inexpensive Parking

Many years ago, when we lived in London and were expecting our first baby, we attended an introductory session at the hospital where we were planning to have the baby.

The session included lots of information on childbirth, breastfeeding and gave a tour of the facilities.

But the most interest and the most questions were all about parking.

Parking seems to be a top concern of most people who have to go into hospital.

So, why is it often so complicated?

Hospital parking is inevitably in short supply and extortionately expensive.

The cost of parking is something that boggles my mind.

None of us want to be at the hospital – whether it is for an admission or an outpatient appointment.

But it isn’t an option; it is a necessity for our child. So then, why the punitive parking charges?

I am a big proponent of public transportation, but it simply isn’t feasible for me to bring my medically complex daughter to the hospital by bus (actually, it would take two buses).

I might feel a bit better about the costs if the money went to the hospital, but in my experience, the parking facilities are usually run by a separate, private company.

So, in my dream hospital there will be plenty of low cost parking.

Close to the hospital and with parking spaces big enough to get kids in and out without denting the neighbouring car in the process.

This alone would, I think, take a lot of stress off parents.

Room Service

I know, this sounds a bit over the top, but hear me out!

If you have a baby or young child, or a child with special needs, or a child who requires complex medical care, chances are, you need to stay with them – all the time.

It can be really, really difficult to leave them – even for a very brief period of time.

I don’t like to leave Miss Z because she is at risk of seizures and aspiration, so needs constant monitoring, and because she is non-verbal, so can’t communicate with the doctors and nurses, and because at 4-years old, it is still a scary experience for her to be left on her own in the hospital.

And although there are nurses caring for her while she’s here, they are here for her medical care.

Nurses aren’t babysitters.

What all this means is that often I miss meals because I need to stay with Miss Z.

And I’m not the only one.

While missing a meal isn’t the end of the world and is all part of the sacrifice that comes with being a parent, it adds to the pressure of a hospital stay.

And while missing one meal may not be a big deal, some parents may not be able to leave at all.

Most hospitals have a café – or a selection of food outlets – on the hospital grounds.

So, it shouldn’t be difficult to arrange a service where you order by phone or online and it is delivered to your child’s room.

After all, Chinese restaurants and pizza places have been doing it successfully for years – so why can’t the hospital café?

Don’t worry, my dream hospital will deliver to your door, for those times when you aren’t able to leave your child’s bedside.

Better Communication

One of the hardest things about Miss Z receiving nearly all her medical care through the children’s hospital is that it is often impossible to communicate with any of her doctors outside appointments or admissions.

The only telephone number offered is the main line to the hospital reception, which then either sends a message to the appropriate person, or transfers you to a department where you are prompted to leave a voicemail message.

Now, I understand that if doctors took direct calls from their patients (or patients’ parents) they would spend all day on the phone and never be able to actually see anyone in person.

But at the same time, there has to be a better way to communicate.

In my dream hospital, there will be receptionists and nurses – real, live people – to take calls, help troubleshoot or navigate the hospital administration when necessary, and pass on messages to specific doctors – and follow up to make sure they respond.

Easier communication would make my life so much easier.

Big Waiting Areas

This one sounds obvious, but we are forever being squashed into over-crowded, noisy, chaotic waiting areas for outpatient appointments.

Since Miss Z can be quite sensitive to noise and crowds, this makes the wait excruciating for her.

And since she is in a wheelchair, it can also be a logistical nightmare, trying to weave through narrow aisles to find a seat without running over anyone’s toes.

My dream hospital will have big waiting areas that are easy to navigate with a wheelchair.

It will have an area fitted out with toys and a television for entertainment, bathrooms (wheelchair accessible with facilities to change older children as well as babies) nearby, and padded chairs (not backless wooden benches) to sit on.

And since this is my dream hospital, perhaps free coffee and tea-making facilities as well.

A few improvements would make long waits outpatient appointments so much better – and easier for all of us to bear.

Music Therapy For All!

One of the most beautiful experiences I have ever had in the hospital involved a music therapist playing her guitar and singing to Miss Z and her roommate – a boy with similar complex needs.

She simply sat in our room and sang a selection of modern popular music – but all of it gentle and calming.

The whole atmosphere in the room changed.

Both Miss Z and her roommate were still and relaxed, listening to the music.

It made me feel quite emotional watching the effect the music had on them both.

It provided a few moments of peace in a day when they were otherwise being continually poked, prodded and stabbed with needles.

There is little doubt that music can make you feel better.

And in my dream hospital, everyone will be given access to music therapy to help them to get through what is otherwise a long, boring and frightening hospital admission.

Appropriate Changing Facilities

Miss Z is four years old, phenomenally long-legged, and is still in nappies.

She is far too tall to fit on a baby changing station anymore, which means it can be a challenge to find somewhere to change her when we are out and about.

Firefly has done a great job of raising awareness of this problem – and encouraging businesses to address it – through its Space for Change campaign.

However, I sometimes feel like that same message also needs to get through to our local hospital – where there is only one bathroom with change facilities for older children in the whole of the hospital.

This is wrong.

The hospital is one of the few places where I expect Miss Z’s needs to be understood and catered for – after all, she is far from the only four year old in nappies that uses the hospital.

And we shouldn’t have to hunt and search for the one bathroom in the whole of a 14-floor building where I can change her.

So, in my dream hospital ALL the public bathrooms on EVERY floor will have facilities for changing older kids.


Most hospitals caring for children have a vast range of wonderful services and volunteers, offering everything from, ‘kangaroo care’, baby cuddling to visiting therapy pets, accessible playgrounds, sensory rooms, services for siblings, and volunteers giving away teddy bears, hand-knit beanies and colouring books and pencils.

There also tends to be a range of services for parents of sick children, such as lounges with free WiFi access, quiet spaces for prayer and meditation, and counselling.

However, in my experience, parents and children – and nurses and staff – often don’t know that many of these services even exist.

The hospital of my dreams will have a directory of services, so that everyone can access information on the services that are available to them – and make use of them.

Those are a few features of the hospital of my dreams.

What would your hospital include?

The Things That Upset You As A Special Needs Parent

Just because my child is disabled doesn’t mean I can’t sympathise with you.

There is a feeling, I think, that, because I have Alex, anyone else’s troubles are insignificant – trivial in the face of my life… and his life… and where we may be headed.

If you want to complain that your child isn’t sleeping, I’m happy to hear this.

If you want to tell me you’re worried that they don’t know their colours yet or are late to walk or that they say their, ‘y’s, oddly… I’ll listen.

If you want to talk about the fact that they just won’t stop talking, or moving, or making a mess and never giving you a minute’s peace and you’d just like a break… I’m happy to lend an ear.

Because. I’m human. Because. I can empathise. Because. Your problem is my problem.  And my problems are your problems.

What I find hard to hear is, ‘Oh, I shouldn’t be complaining to you’, or, ‘Anyway, you don’t need to hear this’ because, although I utterly know it’s said with the best intentions, what it actually feels like you’re saying is: ‘Oh goodness, your life is so much harder than mine, really this is trivial, I have no reason to moan (you, on the other hand, really do)’.

And I have to tell you that I count my blessings every day.

I love my son.

I love that his is a sunny disposition… that if he’s upset I can usually figure out what is wrong…

That when he’s ill he wants cuddles.

That he tries – every day – to move his little body the way he wants it to even though it doesn’t always want to cooperate…

I love that his sister and he have the most amazing bond.

I love that he makes us laugh, I love that he is as he is.

And though I can’t honestly say hand on heart that I don’t wonder how he would be – where we would all be – if he was a typically developing 5 year old – I do wonder if he would be this same delightful boy.

And this journey of ours has taken us to places I never would have visited and we’ve made friends – good friends – I never would have met.

One thing I’ve learned from having Alex is that the moment you enter another person’s world you see that there is always something… a wayward sibling, a dying parent, an ill spouse, a redundancy looming… something to worry about.

For no-one’s life is ever perfect.

The parts of your life that are upsetting to you are the parts of your life that are upsetting to you.

This isn’t a competition.

So talk to me.

And I’m so happy to listen.

Life Skills Goals For Independent Living: Computer Skills

We were so excited and amazed by what a computer could do!

The use of floppy discs, diskettes, cd-roms, chat rooms, email, paint and drawing programs, educational games like the JumpStart series, and surfing the Internet all became a part of the regular, everyday routine around here!

Computers have evolved and upgraded so much now, that I am even more amazed at everything they can do and have come to mean to us.

In fact, computers are now so much a part of and important to our everyday lives that I wonder just how we ever survived without them.

The possibilities for computers to assist people with special needs, especially for those with communication issues seems almost endless.

Just as everyone else uses computers to communicate, find information, earn educational degrees, and entertain themselves, so do the disabled, though they may need a few special tweaks made to their computers or special equipment to do so.

Please permit me to be so bold as to suggest that it is quite likely many individuals with disabilities who are phyisically and cognitively able to do so could benefit from learning the following basic computer and Internet navigation skills.

Basic Computer and Internet Skills:

• Turning on the computer

• Using the keyboard

• Navigating the desktop

• Learning to spell favorite websites’ names

• Learning to spell the names of the people they want to communicate with

• Using email, Facebook, Skype, and/or other favorite social media choices

• Using Google

• Using YouTube

If your special someone is not capable of learning these basic computer and Internet skills, do not despair because there are so many other communication options available for them.

Advances in the assistive technology market have exploded in recent years making all kinds of technological devices, hardware, and software available to help the disabled!

Special Needs Technology:

• Voice activated typing programs

• Speech recognition software

• Special computer access methods for people who cannot use a keyboard

• Dynavox

• Communication apps for iPad

For the sake of brevity, I will not go into specific details about such devices and equipment, but I will include the link to one of my favourite assistive technology websites below.

Resources for Special Needs Technology

…And What Do You Do With Your DLA, Dear?

When we had our children, these beautiful dreamed-for, hoped-for… much-wanted children… we’d never heard of DLA.

Didn’t know what it stood for, what it was meant for, that it existed at all…

When Small’s physio – having watched me push his 9-month-old cotton wool arms into his jacket – gently suggested that we might be eligible… we didn’t want it.

Didn’t want what it stood for.

That Small was disabled. That we might need help.

But it’s surprising what help you do need.

And you come to realise that bit by very small bit.

It pays for the nappies you’re buying over the age where your child would usually have got themselves dry… and when the NHS steps in with their supply, it pays for the additional nappies – if the 4-a-day you’re allowed aren’t enough.

I’m sorry, your son poos too much’.

(That never actually happened, but that’s essentially what they’re saying).

It pays for additional water/ fuel/ clothes as your child ratchets their way through more changes of clothes a day than you ever thought possible.

Messy play?

No, just dribble… or food… or poo (again).

It pays for the dozens of hopefully bought, cast-aside-in-scorn cups and cutlery sets that we buy in the vain hope that surely this one, this one, they will make use of.

That it will be the right height/ depth/ weight/ colour to help your child learn to eat and drink a little more independently.

It pays for over-priced, ‘special needs’, toys that light up or spin round and play music as your child, your gorgeous child, interacts with their world in a whole new way and these – and only these – help them join in.

Make them laugh. Smile. Enjoy life.

It pays for fuel and a bigger car.

Your child who cannot walk still needs to go places, see things, visit people… just come shopping… but we cannot walk because it is too far or downhill or just raining.

So, your child – and all their equipment – needs transporting more than most.

In a bigger vehicle than most.

When Small was, well, small, and we went away it was just him and a pushchair and a travel cot… now, it’s a wheelchair, and off-road buggy, a bed in a suitcase, a great big travel seat… and not much room for anything else.

Sometimes when we go away – our not very big family of four – there’s so much stuff we take two cars.

I miss the travelling all together.

And sometimes (whisper it) you might just feel you want it to help pay for some wine.

Or chocolate.

Or sometimes both.

Just to remove the taste of the day.

Set you up for the next one.

Whatever expense it may bring.

Life Skills Goals For Independent Living: Part Two

Please consider the following suggestions and Questions to ask yourself when deciding upon the first self-help skill to target:

• Begin observing your child as he or she goes about his or her typical activities of daily living.

• What self help activities are you performing for your child that would make life easier for you and your child’s future caregivers if he or she could do them him or herself?

• Which self-help skills has your child already accomplished?

• What skills has your child not yet achieved that is at roughly the same or just a little bit above the level of ability as the skills they are already performing?

• Has your child ever expressed an interest in learning any new self-help skills? If not, now is the time to talk about how fun doing things for him or herself will be and how proud you and your child will be when he or she learns to do more for him/herself.

• What self-help skills do you realistically think your child is capable of learning?

• Ask your child what he or she think is the most important skill to learn first. I suggest leaning towards a chore that will be simple enough for your child to master quickly. There’s nothing like success to motivate us to keep on learning and achieving new skills!!

Model the skill: Once you’ve finally chosen your child’s first skill to work on, go ahead and model each step necessary to accomplish that skill successfully.

• Be sure to have all the materials needed to teach the new skill in place before trying to teach how to do it.

• Many children with special needs are visual and hands-on learners. Going through the motions, with your child, of each step required to learn the new skill is a must!

• Children who have auditory or language processing disabilities may not comprehend lengthy verbal instructions. For these children, I highly recommend displaying photo instructions or, if your child can read, have written directions made up for them to go over. Begin with little baby steps. Break down your target skills into incremental steps.

I’ll use the skill of replacing a dead light bulb as an example to explain what I mean!

1. Turn off the lamp

2. Unscrew the light bulb counter clockwise

3. Throw the dead bulb in the garbage

4. Get a new bulb

5. Screw the new bulb into the lamp socket clockwise

6. Turn on the lamp Rewards: Should our children be rewarded for working on self help skills?

I personally believe that a little praise and the satisfaction of a job well done are the best kinds of rewards.

However, if you think a little extra motivation will make the difference in whether or not your child is willing to put in the effort required to learn a new skill then a more concrete reward may be in order, such as:

• A new toy or gadget

• Playing a favorite game with mom or dad

• A ride on the carousel

• A favorite edible treat

• An outing to a favorite destination

• Staying up an hour past bedtime

• Watching a favorite TV show

• Extra computer time

Check back later for Part Three: Computer Skills for Independent Living

Why, ‘Special Needs’, Parents Really Are Super-Parents

Commenting on this picture, one person said that they couldn’t see why special needs parents were any more ‘super’ than any other parent: we’re all just trying to do our best for our children.

I wouldn’t dispute the fact that we all want to do the best we can for our kids, but it got me thinking about the wide gulf of difference between what the parents of, ‘typical’, children are required to do to ensure the best care for their children, and what we, ‘special needs’, parents have to do.

There is a vast difference between waking up and putting your newborn baby to your breast and sitting up nights to express milk for a child not strong enough to breastfeed.

Then, after that, spending a further one and a half hours trying to feed that milk to a little one who struggles not to get exhausted before they’ve taken the minimum amount necessary for their welfare.

All the while, knowing that in another hour you’ll have to start all over again and, in the meantime your other children need to be given breakfast and taken to school.

There’s a big difference, too, between preparing a home-cooked meal for your child and administering nutrition via an NG tube or peg, or liquidise every morsel they ingest.

Being woken periodically by a child who doesn’t sleep well is a world away from routinely being up all through the hours of darkness because your child can’t tell night from day, or whose brain just doesn’t ever switch off, or has a condition which means that someone has to stay awake with them all night, for safety.

How many people, who are not members of the medical professions, have to routinely manage medical equipment and treatments, day-in-day-out, like many special needs parents have to?

How many of them have to endure the hostile stares and judgemental comments of others when their child goes into meltdown in a public place, whilst trying to manage the situation calmly?

Do they have to fit in numerous medical appointments and therapy sessions on a weekly basis, or juggle the needs of a child frequently in hospital with the needs of their others at home?

All whilst trying to keep their worries and fears in perspective and under their hats?

Whilst holding down a job, or studying?

Whilst trying to maintain their relationship with a partner, who may be their rock, but may bring additional problems which also need managing?

Would they even dream of attempting to do all that in make-up and high heels, just because that’s how they roll and, at the end of the day, they still need to be themselves?

My fellow special needs parents and I – yes, we are super-parents – not because someone waved a magic wand and made it so, or gave us a mask and a cape and a pat on the back, but because we had no choice but to find it within ourselves to shoulder all these extras and carry on as normal.