Becoming A Working Parent Of A Child With Special Needs

I can’t wait to be on the active register again and hopefully land a great part-time job.

On the other hand, I worry how I’ll be able to juggle looking after the girls, between family and nurses and daddy covering care.

I’ll be an hour away in University, and doing my work placements – it’ll be an intense 3 months!

I sometimes question am I wise trying to pursue a career despite my children needing so much attention.

Especially my youngest Brielle, who needs constant 1:1 care.

That all being said, it does feel like the right time for me to return to practice.

My eldest is almost 11 years old, and Brielle who has many additional needs is in school now full time and is almost 5 years old (with two girls in between them).

I’m a busy mama for sure, but life has been, and is, so fulfilling, and fun!

Since the girls are all at school now, I have my mornings and early afternoons free most days!

I’m excited at the prospect of getting out of the house, and doing something for me!

As parents, we are usually so focused on the needs of our little ones, putting our own needs on the back-burner.

For my own sanity, I need some space.

I think working for me, will be a form of respite.

Going back to work for me is going to be rewarding, as I’ll be working as part of a team and enjoy the responsibility and job satisfaction away from my family.

What a privilege to be valued as a capable and caring nurse.

I have no regrets when it comes to the past 10 years of staying home with the kids.

I’ve been a mother and in many instances, an at-home nurse for my ‘baby’ Brielle.

I can’t believe she’s in school and growing up so fast!

She is medically complex with many special needs due to extreme prematurity.

Boy has she come a long way from those early days.

We are thankful every day that she’s still here.

I’m blessed to have a supportive husband and family who have encouraged me along every step of the way, and will get stuck in when it comes to helping out with the kids.

It’s an exciting new chapter for us, and I sure hope we all benefit from, ‘mommy’, getting out of the house, at least sometimes.

Bittersweet Birthdays of a Kid with Special Needs

Birthdays are an exciting time filled with colorful balloons, character cakes, and gifts ties up with ribbon.

Birthdays mean next-size-up in clothing or even going from a crib to a toddler bed.

It’s a house filled with family and friends and, if you’re in our family, cocktails too.

Birthdays are not just another day and another year older.

Birthdays mean celebration, reflection, and even small pains in my heart.

There is so much to be celebrated for a child’s birthday, but I have learned that birthday celebrations for a special needs child are so much more.

Our youngest son is medically fragile so as he turns another year older I wipe the sweat off my brow and am thankful we made it another year.

I reminisce about all of the children lost to his disorder and thank God he’s here.

I think about the 365 nights of interrupted sleep and high five my husband because we’re still standing.

I add up the 260 therapy appointments and take note of all of the progress over the last year.

I reflect on the sleepless nights in the hospital filled with worry and am so thankful we’re not there.

I smile thinking about the many people we have met just because our son is who he is.

I think about the friendships I’ve forged with other special needs parents and feel more than lucky.

Another year, another win.

When birthdays come around I am so thankful our son is on this earth, but the celebration isn’t without sorrow.

As he gets older the developmental gap between him and his peers gets greater and greater.

The gap that was a sliver has slowly started widening over time.

The older he gets the more his developmental delay stares me straight in my face.

He’s still trying to reach milestones that 6 month olds have mastered.

Birthdays remind me of what he could be doing.

I can picture in my mind the cake smash that could have happened.

I envision the ripping open of packages only to move on from one to the next.

I can imagine him singing Happy Birthday to himself days before and after his party.

But that’s not how it goes and I don’t know when it will.

Birthdays are bittersweet.

Our son is still very young and I can only imagine what his next birthday will bring.

We’ll be celebrating another year of accomplishment parenting a child who has extraordinary needs, but I know that there too will be hints of sadness.

The hints of sadness may be a reminder of what he could be doing but they will also remind me of what we have yet to achieve.

They’ll keep us moving forward and forging on.

Birthdays have become so much more than cake.

They’re a goal and a victory.

7 Money Saving-Tips for a Budget-Friendly Special Needs Christmas

1. Have a good clear out

Be ruthless and get any toys, books, clothes, shoes, baby items etc on Ebay or advertise on Gumtree.

You will be amazed what people will buy on Ebay and it is easy money to make from things you no longer want or require.

2. Check your utility bills

Winter means it is cold and it seems to be dark all the time.

It also means we use more gas and electricity.

Also, if you like to put up lots of Christmas lights up around your house, you know you are in for a big bill in January!

Use price comparison websites to make sure that you are not paying more than you should be and if you are, swap to a better deal.

Whilst, you are doing this check all the other items you pay out for each month (broadband, mobile phones etc) and see if you can get better deals on them and save yourself some money there.

3. Try and cut down on who you buy for

If you have a large family and circle of friends and you buy for all the adults as well as the children suggest that you all just continue to buy gifts for the children and not each other.

Buying large numbers of people gifts all at the same time of year is very expensive, they may also be glad to have their Christmas bill reduced as well.

It doesn’t mean that you don’t care about each other, but we all know that times are hard.

4. Make your own presents and cards

If you are quite crafty or enjoy cooking this is a good one to do. It is a great one to get the kids involved in as well.

People love receiving gifts where someone has taken the time to make it themselves.

Whether, it is some freshly baked biscuits or cakes or a knitted scarf, I am sure they will love it.

There are plenty of crafty ideas and recipes on the internet to get you started.

5. Start buying early

I start buying for Christmas (and birthdays) in January in the sales.

I don’t just buy anything as it may be reduced or half price but I think about what I think someone will like and then buy it and put it away for Christmas.

That way, I am not paying out for presents all at once.

I have spread the cost throughout the year.

I know this can be difficult with children as they may all want the latest toys but open a bank account just for presents and put some money into each month to save up throughout the year for Christmas.

6. Make a list and stick to it

Food shopping, I hate it!

I used to constantly come home with things that were supposedly on special offer that I had not gone to the supermarket for and which subsequently got thrown in the bin!

Therefore, I may as well have just chucked my money in the bin.

Now, I always (try) and take a list and stick to it.

I have saved money as I am not buying unwanted items just the things I need.

I now keep my eyes averted from those ‘special’ offers!

This works for present buying as well.

Budget an amount, stick to it!

7. Have fun!!

Christmas is a time to be with our loved ones and to enjoy ourselves.

A bit of overindulgence at this time of year is good, it is expected, but not so much that you are dreading the bills coming in the post in January!

Merry Christmas everyone and a Happy and Healthy New Year!

A Letter to Christmas from Special Needs Mum

I rush about looking for, ‘theee perfect’, gift for each of the men in my life.

I think I’ve found the perfect gift until an advertisement on the TV, Radio, Internet or bus stop (of all places!) promptly informs me that I may have gotten it wrong.

The shops are telling me I don’t have the must haves while the postman is reminding me of my must pays!

I search high and low for Ethan; what do you buy a child who loves teddies but has every teddy you see piled high in the toy stores?

We rummage through his collection and pick a few to replace – Homer Simpson – that is the answer, this year.

Ethan’s current Homer teddy is so battered and torn that it has become fit for the bin…I can’t throw it away until I replace it…

Ethan won’t notice but I will, he has had that teddy since he was 2, I can’t just throw it out, can I?

My mission to find Homer began in September; including internet shopping, which honestly, I stopped because last time I ordered a teddy off Ebay for Christmas, the teddy didn’t arrive until January and cost me a fortune.

I found Homer three weeks ago.

D and I popped into the local toy store and as luck would have it there was a Homer and a Bart teddy…ish – they had soft bodies but hard heads.

We stood throwing them at each other in the middle of the isle, commenting on how soar one of those would be–this is purely market research as Ethan loves to throw things…many things.

Other shoppers giggled as they passed us while staff members asked if they could help us.

Turns out throwing teddies in a toy store is not allowed.

We bought both; the heads didn’t hurt that much and Ethan is losing his swing due to restrictive joints.

We headed towards the toddler isle; not for our toddler but for Ethan.

Every year, Christmas, you hurt my heart more when I’ve to shop in this isle for my teenager.

I know it’s not your fault, but it is hard when other parents and staff assume we have a few toddlers at home (yes, we buy that much, in the hopes that something will help Ethan engage).

Then comes the decorating, the photos and the visit to good ol saint Nick not to mention the school plays, concerts and the beautiful Christmas mass.

I hang decorations that all my boys made years previously, only with Ethan’s I can see the decline in his skills – again not your fault Christmas, but…

If I decorate too early Ethan gets caught in a, ‘loop’, asking over and over, ‘Santa?’ – he cannot comprehend time.

The camera is always on and ready to catch a moment when Ethan looks like any other child enjoying his family at Christmas…each year I snap more and more pictures trying to capture Ethan just being Ethan…Christmas, it is getting harder each year…I know it’s not your fault…

I video each Christmas morning, last Christmas I dropped the camera as Ethan had no clue how to open his gift….that was the hardest thing I have had to witness …I don’t blame you Christmas but you don’t make it easier as the years go on…

The pressure I receive from random strangers to well meaning family and friends about why I haven’t visited Santa yet is simply depressing.

It feels judgemental and condescending informing me that all children should see Santa.

My boys do see Santa just not Ethan, not in a public setting and certainly not with all my boys.

It is simply too hard on Ethan and us…that’s the truth.

However, this year, we decided to try a public visit as our toddler is so excited, which is lovely to see but also bittersweet.

With the help of a wonderful business here locally, Ethan and the toddler will visit Santa while Santa is preparing for his grotto to be opened to the public…people are wonderful, thank you Christmas for showing me that.

J, our middle guy, has a school concert in the evening; how I wish it was during school hours.

One of us can attend not both.

We cannot bring Ethan to a concert and expect him to sit through it…Christmas, I can’t remember the last time we went to such an event as a family…but that’s not your fault…

As for Christmas mass, we haven’t been in years, ever since Ethan roared at the priest to ‘shug up’ …thankfully the priest didn’t hear but those beside us did and they witnessed a sensory overload up-close and personal…it was hard getting out of the church quietly, with Ethan roaring ‘fug off’ and ‘shug up’… it was funny though, Christmas, I’ll give you that.

We will laugh and sing and get excited with the boys over this special season, but Christmas, sometimes I pretend, sometimes I want to cancel you and your glitter balls and hide indoors away from all the happy smiling children beaming with excitement

But then Christmas, I watch… I watch my boys, my husband and I realise as they play, laugh, fight and argue that this group is what you, my dear Christmas, are all about… family.

We will have ourselves a non-typical Christmas, we won’t decorate until the week before Christmas, we will sneak into visit Santa, there’ll be no family attendance at a school concert and there will be no Christmas mass…but there will be us, our little family enjoying whatever you bring us this year, dear Christmas.

We have learned to appreciate the littlest of moments and we hope those of you reading this can do the same…so what if the family photo isn’t perfect?

So what if your children sulk?

So what if the dinner is way later than you planned?

Take the time to just be….and that is really what my friend Christmas is trying to be about…goodwill to all mankind …may peace be in your heart and home over this Christmas season.

Thank you Christmas for always popping up, even though I find you hard, you are always there trying to remind me of your true meaning,

I get it.



What Do You See When You Look at a Child With A Disability?

I see you looking at my little boy.

I see you looking at him, and then looking at me as I’m looking at you looking at him.

Then you quickly look away, but steal another look at him.

And at me.

What do you see when you look at him?

Do you see a disabled child? 

A child who is awkwardly bottom-shuffling along the floor of the soft-play trying with all his might to climb a foot-high step?

A little boy who is attempting to feed himself custard, and it’s going all over his face and clothes?

A child that’s being pushed around in an adapted trike while we wait for the wheelchair referral?

You’re thinking, I wonder why his mum doesn’t help him over that step.

I wish he would get out of my Tommy’s way!

How can she let him make such a mess; why doesn’t she wipe his face?

Why is he eating custard and not a proper meal?

Why is he being pushed around in that thing, I wonder why he isn’t walking?

Poor boy. Poor family.

Look a bit closer.  

What do you really see?

I’ll tell you what I see.

A child who has had to learn the hard way, learn to let all the other kids push past him, knock into him, step on his fingers.

A child whose neural pathways are carrying scrambled messages from his brain to his legs.

A child who has bravely tolerated two years of feeding therapy and now eats orally, against the odds, even though the muscles in his mouth don’t work properly.

A child that sits patiently in the trike even though he wants to be off, on his bottom, exploring the world, and doesn’t understand why it’s not always appropriate.

Consider this: while your child has been running around at playschool making potato prints, mine has been making best friends with six different therapists.

While you have been back at work and pondering over baby number two I have been juggling part-time work with full-time therapy programmes.

While you can get a baby-sitter for a night out, we have to get friends to come to us, as we can’t rely on just anyone to understand his needs like we can.

And talking of friends, imagine if some of your closest friends became increasingly distant because they don’t know how to cope with, or react to, your child.

I don’t mind you looking.  

I don’t mind you staring.

I don’t mind you nudging your mate and talking.

I don’t even mind what you are thinking.

I did mind, for a long time, and it did me no good.

I have now reached a place where I can happily look at you, looking at my son, and look you in the eye, and smile.

Because he’s mine.

He’s all mine, I get to take him home and watch him grow, develop and flourish.

I’m sorry for you, because you’ll never get that divine feeling, that opportunity to watch something amazing happen.

Let’s put it into perspective.

You probably don’t remember the first time your child independently climbed up the steps and slid down the slide.

Box ticked!

Move on to the next milestone.  

Well, I can certainly remember the joyous first time we could safely release my son from the top of the slide, to slide down on his own.

While you were applauding your child for counting to ten in French, we were celebrating our son for pronouncing his first consonants.

Not necessarily in English.

I feel bad for you.

It’s hard not to look, it’s hard not to judge, and it’s hard not to wonder.

But it is easy to show empathy and compassion.

If you are curious – talk to me!

If you are offended – don’t look!

You make me feel empowered.

Empowered by your awkwardness, your embarrassment, your irritation.

I simply feel proud.  

Proud to know the real story and the real boy, and be a part of his really amazing journey.

I am also aware that for every insensitive and unkind person, there are dozens who are genuinely interested, impressed, endeared and enamoured by my son.

Those that can see through the spinal brace, inappropriate behaviour and delayed speech, and see the marvellous little man underneath.

On the scarce days that I strike up conversations with these people, it really makes my day.

I take comfort in the fact that we have made a tiny yet significant impact on their life.

I wish more people could be more accepting of the multi-dimensional world around them.

These days it seems that it is more socially acceptable to be cold, quiet and vapid than to be sensitive, open and amicable.

So, next time you steal a look at him, then back at me, and then sheepishly look away, perhaps go home and look in the mirror.

What do you see?

3 Things You Can’t Buy This Christmas – Raising a Child with Special Needs

If your house is anything like my house, the kids have been excitedly taking about Christmas presents for, let’s face it, months!

Money can buy a lot of things.

But it can’t buy many of the most precious things in life.

I was reflecting on what things I really want for my girls this Christmas, things I want them to put most value in, that have lasting worth, and things money just can’t buy.


We moved back to Northern Ireland a year ago to be closer to most of our family.

The children were growing up fast and each passing year away from our families, we could feel the tug grow stronger, beckoning us back towards grandparents, siblings, cousins, aunties & uncles.

Granted, all families have their complexities and problems, we are all different people trying to get along and love each other!

You really don’t have a choice when it comes to picking your family but family can be, and is, one of life’s greatest blessings and securities.

Especially when one of your children has many complex health and learning issues.

I am also so grateful for my loving husband and four daughters, that we get to be a family together and share life’s journey.


Real friendships take a lot of work.

They require mutual effort, patience and understanding.

I’m grateful for friends who support me in both the good times and the difficult times.

Friends who go out of their way to do something nice or helpful.

Friends who make time to give me a call, send a text or email, or meet up for a coffee.

I want my girls to grow up to be good friends, and to make close friendships that will support and nurture their unique characters.

Life would be meaningless without relationship.

For Brielle, I want her to have friends who appreciate her for who she is.

Friends who praise her many accomplishments and strengths, not those who get caught up on her disabilities and limitations.

She’ll have friends with disabilities like her, and she have others who are perfectly healthy and, ‘able,’ – I do not wish her to be excluded from either circle.


How often we take our health for granted.

This Christmas, we are delighted that the girls’ Grandad no longer requires regular dialysis, after a successful kidney transplant in October.

And although Brielle spent a night in hospital a week ago due to chest complications, the hospital admissions and illnesses used to be way more frequent and long.

Our little medically-complex miracle is getting more resilient, hooray!

We must appreciate every new day we have in good health, and live every day to its full potential.

For looking around us, and in our own experiences, we know that life is fragile and unpredictable.

Life is a gift.

A Month of Special Needs Parenting

Unfortunately November did not show any rainbow at the end with my pot of gold.

During the month of October, we were busy raising awareness for Spina bifida, attending the annual Walk-N-Roll.

Besides that, Oliver was facing his own little battles with a reoccurring right clubbed foot, central and obstructive sleep apnea, pressure sores, UTI infections and teething!

This poor little guy needs a bigger break than I do!

We are back to weekly casting to try and stretch his right foot out.

We successfully corrected both clubbed feet when he was around 6 months of age, through this casting.

It has been a year since his Achilles tenotomy release surgery, and his right foot has started to tighten up again.

Our goal is to always avoid surgery when possible, so we opted for serial casting again.

Although he does not fully crawl yet, this 18 month old just wants to be on the move…all the time.

Throw a full leg cast into the equation and you have one frustrated and stinky baby!

During our second week of casting, we developed a pressure sore and had to take a break to let it heal.

Because he is paralyzed from the knees down, blood flow to the areas is poor because movement is not existent.

This means when he has cuts or sores, they are much, much slower to heal than most others.

Unfortunately this can lead to serious infections if not cared from properly and caught early enough.

We just so happened to catch his in good timing, and it cleared within two weeks.

So here we are with his 4th cast, ready to be done and take a bath!

The next little bump on our list, was this recent diagnosis of central and obstructive sleep apnea.

This all started with snoring which led to a sleep study, resulting in our new diagnosis.

After the results, we were sent to an ENT (ear, nose and throat specialist) to evaluate his tonsils and adenoids.

The doctor informed us that they were larger than other kiddos his age, but not too alarming.

Our only option was surgery to remove them.


Remember, our goal is to avoid surgery at any time.

So I called the neurosurgeon and he now scheduled a full head and spine MRI to see what his Chiari is looking like.

Chiari is also known as hind brain herniation.

For Oliver, because of his spinal diagnosis, it pulls on his cerebellum thus protruding into his cervical spine.

This can cause problems with eating, swallowing, breathing and more.

This is why when Oliver started snoring, I knew something was different with his breathing and the amount of space in his esophageal region.

Beginning of November we have the MRI, and surgery may be our only two options whether it be to remove the tonsils and adenoids, or a more serious surgery to decompress the area his Chiari may be affecting.

Our other constant battle is urinary tract infections.

Oliver suffered two before we got told that we would cath him around the clock, every three hours.

Just recently, while cathing, we got our third one.

They are such a hassle to go through, because he gets fevers and different symptoms that could mean a number of things other than an infection.

I always look like the over paranoid mother sending him in to the ER for a fever that won’t go down with medication.

I have left with respiratory diagnosis, simple cold diagnosis, and this last one was the real deal.

Because of this last one, we are now prescribed a daily antibiotic to take until who knows when!

The last little update comes with ease compared to the others.

Teething… this superman of mine popped in, not one but TWO molars without me even knowing.

I was simply scanning his gums one day and noticed the two pearly whites!

With all these downs, comes our ups though…Oliver has learned to say, “Look!” and, “Dog, Wow-wow.”

He has the more interesting conversations with himself that I can only wish I knew what he was really saying.

He has even recently learned how to use his Bumbo wheelchair!

Life is a constant rush of appointments and treatments for us, but we always make sure to stop and appreciate the little things we have going.

Loo of the Year Awards 2015

The presentation was at the Loo of the Year Awards, attended by key players in the toilet and personal hygiene industry, as well as leading retailers, restaurant and pub chains, visitor attractions, holiday parks, shopping centres and local authorities.

The room was pretty silent as I spoke.

So I think I can safely say that I achieved my goal of raising awareness.

Speaking in public is not something that I would have put myself forward for before I became a special needs mum.

But as Hadley’s parent, I feel a real sense of duty to get involved in the Changing Places and Space to Change campaigns and to try to make a difference.

This was a fantastic opportunity to get in front of some important opinion formers and decision makers that I couldn’t possibly pass up.

It’s amazing what we can do as special needs parents – the things that we find ourselves doing that would normally be way out of our comfort zones.

We are inspired by our incredible children who deserve so much better, and that makes us a force to be reckoned with.

And I’ll tell you a little secret.

I actually really enjoyed standing up there.

It felt good to educate a few more people.

To say my piece and even more so to get a supportive response.

I feel like we are slowly getting somewhere.

Here’s just a little bit of what I said…

This is my son, Hadley. 

He was born severely prematurely and as a result he has Cerebral Palsy. 

Hadley, as you can see, is a wheelchair user. 

But what you can’t see, is that he is incontinent because of his condition and needs nappies.

Standard accessible toilets do not meet the needs of many of the disabled population.

They almost always exclude anybody who cannot use a toilet independently, including Hadley.

This is one of the most heart-wrenching challenges we face when away from home, whether that is shopping, days out or hospital appointments. 

Hadley is too big for baby changing tables and cannot stand unaided or sit on a standard toilet. 

So, we are regularly faced with the harsh reality of having to change him on a toilet floor. 

Often, a disgusting, urine-soaked, toilet floor. 

And if a private disabled toilet is unavailable, we have no other option than to change him in the ladies or gents or the boot of our car in view of others.

It’s undignified, unhygienic and unsafe. 

It reduces both of us to tears.

You wouldn’t dream of laying a new born baby on a filthy toilet floor, and yet still it is widely acceptable for disabled children and adults to have to endure this. 

We regularly avoid going out for fear of the toilet facilities we will be faced with. 

It is utterly soul-destroying that a five year old should have his life restricted so much already. 

And it’s not just Hadley who is at risk.

I put my ability to care for him in serious jeopardy every time I lift him in and out of his wheelchair and up and down from the floor, trying so hard not to incur a back injury. 

I struggle with a five year old. I have no idea how parents and carers of older children and adults cope.

They must be superhuman! 

So, like many other parents and carers, I spend most of my spare time campaigning for change.

Raising awareness of this issue and talking to businesses, local councils, the media, and anyone who’ll listen, about the need to improve facilities for families like ours.  

Because I believe the main problem is not people’s willingness to help or change, but the fact that most people are unaware this problem even exists! 

We would like to see official ‘Changing Places’ facilities like this in all large public buildings including:

Train stations, airports, bus stations, ferry ports, Sports stadiums, leisure facilities, museums, concert halls and art galleries.  City centres and large town centres, supermarkets, shopping centres, Major motorway service stations, town halls, civic centres and libraries Schools, colleges and universities, hospitals, health centres and community practices. 

I believe that they should be fitted to existing buildings retrospectively and should be included in all new public buildings as standard practice.

A changing place toilet is an additional toilet and changing room for anyone with special needs or disabilities. 

It includes a height adjustable, adult sized changing bed and ceiling mounted hoist. 

As well as a peninsular toilet with space for a carer either side, plus plenty of space for carers and equipment to comfortably move around. 

The recommended size of these facilities is a minimum of 12 square meters. 

These pieces of equipment allow for the safe and dignified changing and moving of any person who needs help with their toileting and personal care.

Ideally, we would love to see Changing Places facilities everywhere.

However, where space or finances are limited, any positive change to be more accessible, is better than none. 

With the Firefly Garden Space to Change campaign, venues can gain awards for being more inclusive to families with special needs by: 

Providing a height adjustable changing bench and mobile hoist.

Or simply providing an adult length changing bench with safety barrier.

Even small businesses offering services to younger children can achieve a green award for providing a private hygienic facility with large changing mat.

If this is not something that you offer already, and you’re not sold on the need by now, here are few bits of useful information.

There are over 11 million people with a limiting long term illness, impairment or disability in the UK.

Any one of whom could have additional personal care requirements like Hadley.

Disabled people spend over £12 BILLION a year, so surely just on a financial basis, it make sense to install these facilities.

The Equality Act 2010 states that: service providers are required to make reasonable changes – including to the built environment – where a disabled customer or potential customer would otherwise be at a substantial disadvantage. 

Surely having to be changed on a dirty toilet floor is more than a substantial disadvantage? 

The Equality Act also requires: that service providers think ahead and take steps to address barriers that impede disabled people.

They should not wait until a disabled person experiences difficulties using a service. 

I believe we are campaigning for facilities that are already a corporate social responsibility. 

There are currently over 780 official Changing Places facilities in the UK – which is brilliant!

But we need so many more.

To put it in perspective, the nearest one to our house is over 15 miles away! 

I am hopeful, that by raising awareness of the need and by celebrating those who get it right, we will see a brighter future….

Where people like Hadley are no longer excluded from everyday activities, we often take for granted.

If just one of you goes home today thinking about how you can make a change, then the world will be a slightly better place tomorrow for my little boy, and the millions of other people living with these challenges. 

Thank you so much for listening. 

If you would like to join Sarah in campaign for better toilet and changing facilities get in touch using our contact form.

Special Needs Parenting: What Are You Doing Now?

Perhaps I was flattered for a moment that I wasn’t as unrecognizable as I often feel.

I look in the mirror and see dark circles from the lack of sleep clinging to the sounds from my child on a baby monitor at all hours of the night, and my stress and worry feel engraved in my facial expressions.

However, she still knew it was me – twenty years later.

It’s that inevitable curious question that always comes up when you haven’t seen someone for at least a decade or more.

“What Are You Doing Now?”

What a completely loaded question for a special needs parent.

Someone that has no clue if you even have children, much less one that is severely disabled.

I paused, knowing that teacher put such promise in my successful future.

She assisted with helping me land my first job at a bank, just two weeks after my sixteenth birthday; a job that I held for eight years into college, until I decided I wanted a career change to represent the achievement of my bachelor’s degree.

She coached me in my high school years with building a strong resume, and appointed me President of FBLA (Future Business Leader’s of America), my senior year.

I competed in various business related events, winning and succeeding at most competitions.

Twenty years ago to that teacher, I’m sure I held so much promise to be her super successful career driven person.

There was no good answer to explain where I am now in life.

What happened to the girl she once knew those twenty years ago, who’s destiny was as bright and strong as one could ever predict?

I stumbled and tripped over my own words.

All I could say was, “I am at home just raising babies.”

But it’s so much more than that.

It’s volumes more than that.

It’s when you can’t work because your child requires 24/7 care.

It’s when you realize that the five college degrees you possess and all the hard work you invested in the first half of your life all means nothing.

I could detect and see a slight disappointment mixed with confusion.

The very career oriented young lady she once knew at home raising babies?

Her answer simply was, “That must be nice.”

Her response likely as much as a fumble as my reply to her was.

I handed her my son’s website card, ones that I carry with me and hand out when people want more to the story than I can verbally give them.

The card that says if you are interested you can go to this link and read all of it, the good, bad and the ugly.

Some people I know will head straight for that web address, while others will discard the card the first chance they get and accept it only in an exchange of pleasantries.

I don’t know that there is ever a good answer for “What Are You Doing Now?” for a special needs parent.

We can’t answer that in a short two minutes or less in passing conversation.

So my natural instinct is to spare the person asking, and take the simple route.

For me that answer appears to be, “Just raising babies.”