World Down Syndrome Day

World Down Syndrome Day sits within an awareness week on 21st March (symbolising the 3rd copy of chromosome 21 that is present in people with the condition).

Families and support groups, schools and workplaces choose to wear bright, funky socks to symbolise that we are all colourful and unique.

Others fundraise for local support such as speech therapy and early interventions for children, and the media is filled with stories that are at once ordinary and marvelous.

Bloggers and charities swap updated information as well as giving practical advice and support, and however we view awareness days or choose to spend them, we are agreed that what we are aiming for is for acceptance and equity for all.

This year’s theme is My Voice, My Community which features speeches from self-advocates around the globe.

In many ways these advocates are positively re-writing the narrative that surrounds Down’s syndrome. Their voices count.

I suppose that what I want most on World Down Syndrome Day is for society to look at each person and see them as unique individuals.

Not a set of stereotypes, a list of medical conditions or worse still co-morbidities, and not a one size fits all cookie cutter image of a type of person.

Our daughter Natty is funny and comedic, cheeky and stubborn, clever and gentle, her personality fills a room as soon as she arrives. But you have to meet her to know that.

You have to get past your preconceptions.

Sadly before most people get to meet someone with Down’s syndrome, if they ever do, they have to battle through a set of outdated myths that surround the condition.

Key Facts

So Firefly have helped create an infographic especially for World Down Syndrome Day 2017 in order to foster understanding, which you can see here..

– There are more than 4 million people living with the condition worldwide.

– Down’s syndrome is not a disease and it is not contagious.

– Down’s syndrome was first described by John Langdon Down in 1866.

– The most common form of Down’s syndrome is Trisomy 21, which is a chance occurrence.

– Rarer forms are Translocation and Mosaic Down’s syndrome, which can be genetic.

– Around 2 babies are born with Down’s syndrome in the UK each day.

– The use of the apostrophe in Down(‘s) depends on where you live in the world. Both are correct.

– Down’s syndrome is just one small part of a person’s identity. They are fully rounded individuals who experience emotions, mood, likes and dislikes just like everyone else.

– People with Down’s syndrome are not a burden. They do not suffer.

– 99% of people with Down’s syndrome report being content with their lives.

– 79% of parents say their outlook on life has improved since the arrival of their child with Down’s syndrome.

– 94% of siblings report being proud of their brother or sister with the condition.

– Children with Down’s syndrome can be educated in mainstream school, special schools or at home.

– The average life expectancy of a person with Down’s syndrome in the UK is around 65 years, with many living into their 70s.

– Many adults with Down’s syndrome lead independent lives with support, have jobs, homes and friendships and can marry if they wish.

So, this World Down Syndrome Day, lets move beyond the statistics, open our hearts and minds, and listen to the voices of the individuals who count: those who have Down’s syndrome.

Letters From My Brother

“Give it back to me!” I held my hand out, expecting him to place my Barbie on my extended palm.

He held my Barbie closer to him, “Make me”

I was sick of it.

I was sick of my eldest brother taking my dolls and decapitating them or drawing on them or checking to see how far they could fly.

He left me no choice but to tell on him.

Being a ‘rat’ in our house was a very serious crime, but he took my Malibu Barbie ; I was petrified he’d cut her hair or worse …tie his Action-man parachute to her and see if she could fly out the attic window , only for her to be lost in the wilderness of our neighbours back garden.

Yes; he liked to use that parachute for many of my toys, never his, not even for his Action-man who the bloody parachute belonged to!

I got my Barbie back with help from our dad and he got sent to his room.

Later he wrote me a note and slide it under my door.

My heart melted when I saw his note. I felt guilty for getting him into trouble.

For all his devilment, he was extremely forgiving and affectionate.

He never held a grudge; even though I may have given him plenty of reasons to throughout our childhood.

I opened my door. He was standing outside, his head down. “I’m sorry Germac”

He had a way about him. He still does.

Despite who may or may not have been in the wrong; I always always apologised to him, out of my three brothers and three sisters; he was and still is, the most forgiving and accepting.

“I am sorry too O. I am sorry I told on ya” I hugged him.

“It’s ok, you’re a rat. It’s not your fault” he covered his mouth, his eyes dancing as he tried to stifle his laughter.

“Oi!” I laughed too and ruffled his hair.

It was in that moment that I felt, perhaps I was too old for Barbies and maybe just maybe seeing if Barbie could fly would be fun.

(We took a different Barbie, I wasn’t sure using my Malibu Barbie was a good idea after such a serious decision, I felt there was no need to rush things)

We climbed the narrow stairs up to his room (aka the boys den), the newly converted attic.

We opened the attic window and we checked to see if Action-man’s parachute could help Barbie fly. It could not folks, and she landed in the gutter.

“Don’t tell dad” I whispered as I decided we needed our brother’s help, nicknamed ‘Action Jackson’ for good reason.

But O had other plans.

“Dad! Dad! Dad! Germac did it!” He roared.

”Gotcha “he laughed as we could hear our dad coming up the first flight of stairs.

“Clever little sh*te” I sighed.

And so I spent the rest of my evening in my room.

The next morning there was a note outside my room, written in O’s handwriting.

When O left notes, it was up to us to decipher them, which was easier to do, the younger he was.

The older he got, it became a tense situation.

He would stand beside you and make you read it to the room and if you didn’t read what it said correctly; he would call you names, all sorts of names and try and explain to you everything you did wrong.

He was a moody teenager, so those notes were always moody but always ended with “love O”.

“Did you get your note?” Dad asked me. “He was writing that for ages!”

“We reckon it’s a confession. He has told me he helped you throw your sister’s Barbie out the window. Why didn’t you throw your own out?”

My father shook his head. “When she finds out about that, you know she is going to break something of yours and I don’t want to hear one word about it”

I nodded.

I couldn’t risk one of my own Barbies to check if I was ready to say goodbye to my Barbies, so I did the sensible thing and took my sisters.

She was almost two years older than me and had not even looked at her Barbies in at least a year, I felt pretty sure she wouldn’t care.

“Thanks for your note O,” I smiled as he coloured in his book.

“It’s ok. We are even now. No more squealing or I’m telling Puds” (Puds was the nickname for my sister whose Barbie got stuck in the gutter)

“Squealing!” I laughed.

“Yes. Ratting. Squealing. It’s all in there. Read it” he pointed at his note.

I nodded and pretended to read it.

“Ok”

“Friends?” He reached out for my hand.

I smiled. He was as cute as a fox as my parents would often say.

“Friends” I shook his hand. “Can I colour?” I asked.

“No way. Just me now” he continued to colour, ever so carefully.

My brother turns 42 later this year.

He is still as mischievous as ever and never misses a chance to give me a hug while telling me everything I’ve done wrong since he last saw me.

He is bossy.

He is a messer.

He is grumpy.

He is a dancer.

He is creative.

He is a singer.

He is a son.

He is a nephew.

He is a cousin to many!

He is a big brother to six.

He is an uncle.

He is O.

And he happens to have an extra chromosome.

3 Strategies To Get you Walking

Walking is also an easy activity for children to join in and explore the world around them.

Despite these perks, let’s face it–walking can get really old, really fast.

So how can you stay motivated to keep this incredibly easy and beneficial activity in your everyday life?

Use these three strategies to not only get you walking, but keep you walking.

1) Podcasts

Podcasts are audio files that can be downloaded or streamed from your computer or smartphone. iTunes alone boasts that it has hundreds of thousands of free podcasts.

With such an extensive inventory available to you, finding a topic you’re interested in (or already love) should only take a quick Google search.

Looking for information about the latest cerebral palsy or other special needs equipment? Look no further.

Are you a gardening enthusiast? Take your pick.

How about a lover of episodic horror stories? Got you covered.

2) Library Audiobooks

Library cards are free, and they provide access to far more than just the printed and bound books that line the shelves.

Many libraries also allow cardholders to check out digital materials like audiobooks (through sites like this one).

The audiobook files are usually downloaded through a connected app, where they can be played at your leisure.

When your checkout time expires, books are automatically returned for you.

Check out a story to listen to with your child, and see if this helps encourage them to keep walking as well.

Visit your local library’s website or speak with a librarian to find out what sort of digital offerings they provide.

3) Stream Your Favorite Shows

This one works better on a treadmill when you don’t have to worry about watching where you’re going, but it’s a simple and inexpensive way to get your mind off of your feet.

If you’re like most content consumers these days, you probably already have at least one streaming service you frequent.

If not, subscriptions to Netflix, Huluand Amazon Prime only cost around $8-12 per month.

Not sure if this is for you? Each service offers a short trial period for free.

Another delightful thing about walking is that it’s easy to do with others–friends, spouses, children.

So strap on that Upsee! It’s time to walk.

10 Songs that Should be in the Soundtrack to Your Life

Fast-paced music usually means something exciting is going on, while slow, somber music may signify something serious.

But who says we cannot have that in real life?

So bust out your headphones or turn up the speakers and play these 10 songs, all of which should be on the soundtrack to your life.

Walking on Sunshine

There’s a huge reason why this Katrina and the Wave’s hit is a must-have (if slightly overused) happy anthem.

From the energetic opening to the optimistic lyrics, one cannot help but walk with a smile while this number playing in their ears.

Staying Alive

Feeling like strutting your stuff down the street? Well, then get the right mood going by playing the Bee Gees’ classic “Staying Alive” before you head out.

Holding on to a Hero

If you need to get pumped up before a big event or just want to blow off some steam, nothing signifies a competitive spirit quite like Bonnie Tyler’s “Holding on for a Hero.”

The opening beats really get you going and doesn’t let up through the whole song.

Daydream Believer

For those in a dreamy daze, “Daydream Believer” from the Monkees is the perfect choice.

After all, what other song gives you the feeling of floating through clouds?

I Won’t Back Down

If you want to show someone you mean business, go with Tom Petty’s “I Won’t Back Down.”

Beautiful

Christina Aguilera’s “Beautiful” is the prime example of a pick me up ballad that everyone needs in their soundtrack, especially since it celebrates what makes us all unique.

I Will Survive

There is a reason why Gloria Gaynor’s “I Will Survive” is a classic karaoke staple; its universal language of not wanting to let someone bring you down applies to everyone.

Everybody Hurts

Sometimes we need a good cry, which is why having “Everybody Hurts” by REM in your soundtrack is key.

Just try listening to it without shedding a tear.

Keep Holding On

When you want to show someone special that you will always be there, then keep Avril Lavigne’s “Keep Holding On” on hand.

Ain’t No Mountain High Enough

Of course, if you need something with a bit more kick to show them you care, use this classic tune from Marvin Gaye and Tammi Terrell.

Naturally, there are a lot of songs out there that can be included to the soundtrack of your life.

Which other ones can you think of?

International Day of Happiness: Our Bubble

Maybe it’s a free coffee on your way to work, or an ‘on time’ bus.

A full wallet, a nice car.

A sale in your favourite shop.

A warm home and food on the table.

Or if you’re like me…

It’s a smile from your child.

A week with no seizures.

A night with more than four hours sleep.

A medicine syringe with the numbers still on at the end of the week (exciting life, eh?!).

Anyway, I’ll move along, so as not to bore you.

Some days you’ll smile because that’s the only option, because if not, you’d cry.

Like when you’ve *just* put your son to bed and he wakes up – HOW does he get by on such little sleep?!

You’ve been awake for 20 hours, you’re exhausted but you’ll smile, you’ll smile at those gorgeous, big brown eyes staring back at you.

You’ll smile when you start thinking things like, “well, at least I get to spend more time with him than anyone else…”

Sleep deprivation does funny things to you, like thinking your own ‘inside jokes’ are funny.

But when you’ve watched that little life slip away more times than you’d like to count, every hour is a blessing.

Each sleepless night is one that I wouldn’t change.

Because when I look into my boys big shiny eyes, I’m suddenly the richest person in the world.

Nothing else matters.

It doesn’t matter how much money we don’t have, how tired I am or how hard tomorrow will be, surviving on such little sleep.

Our bubble is our happy place.

We entered ‘our bubble’ just moments after my son was born with a severe brain injury in 2012.

“Babies like Aj don’t survive.”

Five words from a neonatal consultant that ring around my head on a daily basis..

And I smile, every time I think of those words.

Because he did survive. He showed them!

I haven’t always been able to smile when I’ve thought of his struggles… our future.

I’ve screamed, I’ve cried, I’ve stomped my feet and asked “why him?!”

But there comes a time when you have to let go of your vision of happiness only being ‘perfect’. And accept that what’s in front of you IS perfect.

He may not be to ‘outsiders’, onlookers, they’ll ask you how you do it and quickly exclaim that they couldn’t… but you’ll know he is perfect, and you couldn’t or wouldn’t even like to imagine this journey with anybody else by your side, that little boy with the big shiny eyes.

And that feeling, that’s happiness.

The best feeling in the world.

#internationaldayofhappiness

‘Join the movement for a happier world’.

Smile at a stranger.

Say hi to someone who looks lost.

Offer help when someone’s struggling.

Spread love, hope and happiness.

A smile can change a person’s day.

To the Person Who Told Me That My Son Wasn’t Autistic

My son is extremely rigid. He can’t transition.  He doesn’t talk. He flaps. He screeches. He hates to be touched by strangers.

He lines items up. He puts everything in his mouth. He doesn’t play with any toys.

As a baby he never slept. Ever. He cried constantly. Endless ear infections, stomach issues, constipation, hearing problems. The list goes on.

He never babbled. To this day he’s never said a word.

I thought it was obvious.

I needed a doctor to tell me what was wrong so I could fix it.

No one ever told me there is an unknown. And it’s worse than knowing.

I remember thinking…look at him. Look at me. Just believe me. Just put my damn fears to rest.

Confirm that he is autistic so we can start to help him.

But it took years.

We were stuck in limbo. We started speech and occupational therapy. Neither of them helped.

One doctor said he could have a speech delay. Another said sensory issues. One doctor said a hearing loss. His pediatrician called him a later bloomer. She said boys develop slower.

No one would say the word autism. It’s like they were scared to say it out loud.

Honestly, I think they really liked me. And my husband and our little family.

They didn’t want Cooper to be autistic any more than we did. Their feelings got in the way.

So, we continued with therapy. All the while paying out of pocket and slowly going broke.

We waited for a breakthrough.

A year went by in limbo. I can still vividly go back to those days and nights of worry.

I would wait for Cooper to go to bed and then I would watch him in the dark and analyze every moment of the day.

He did ‘this’ that WAS very autistic.

And then he did ‘that’ which was NOT autistic.

And then I would add them up.

I spent hours every night finding blogs about kids like Cooper.

I completed autism checklists online. I asked Google about nonverbal children.

Every answer said autism.

I knew it was true. Except no one believed me. Not Cooper’s dad. Not our parents.

His pediatrician gushed about his eye contact. Because of that eye contact she missed everything else.

Teachers went on and on about how sweet Cooper was. He loved hugs and holding hands. He craved and demanded attention and praise.

And they missed the other signs.

Even at his first IEP meeting the teachers failed us. No one wanted to say autism.

They were torn between that and developmentally delayed.

They went as far as going around the room and taking a vote on whether to label him autistic or developmentally delayed.

It was traumatic.

I sat there watching their faces. They refused to make eye contact with me.

I was screaming in my head…just say it you jerks.

Just say it. What if it was your kid?

The vote came 4 to 3 with a favor of developmentally delayed.

I got the final vote.

I looked at them and thought…you failed this kid. You failed me.

You are supposed to tell me what to do. I am just a normal mom who doesn’t know what to do.

And a quiet teacher spoke up and said…’I think you should pick autism. He will get more services. And you will get more help. And if he isn’t autistic it will surface eventually.’

And the tears came.

The room was silent.

Fine. I will diagnose my own son.

Cooper is autistic.

And then I eventually found the right people. The right doctors and therapists.

And I got the help we needed. And the diagnosis that I so needed to hear out loud.

We moved to a new city with a fantastic autism program. The services started coming in. A few years went by.

Time went on. I started to heal. Cooper started to thrive.

We built a village around this kiddo and watched him thrive.

The autism was still there. No words. Severe sensory issues. Extreme rigidity.

But he was growing. We were a team. And we were making it.

And then it happened.

A teacher looked at me and said, “I don’t think your son is autistic.”

I felt like I had been punched in the stomach. I couldn’t speak. There were no words.

For once I was at a loss. I hadn’t heard that sentence in years.

I felt the sweat on my face.

I looked down and counted to ten before speaking. I had too. I was so angry I couldn’t even speak.

The person went onto say that Cooper was too social to be autistic. He was too loving. He didn’t fit the profile. He obviously had a severe speech delay and sensory processing disorder.

He listed a few other things but I couldn’t listen. I was too angry.

If this person knew what I went through to get to this exact moment in my life they wouldn’t be saying these words.

The countless appointments and time and moments missed. The agony and crying over wondering is he or isn’t he.

How dare he. How dare he play doctor or God with my son.

With my life. With my hope. But most of all with my acceptance.

My son was autistic. It took me 4 ½ years to be able to say that out loud.

Cooper and I were in a good place.

I looked up and smiled.

I told him thank you.

Thank you for getting to know Cooper. For truly spending time with him and creating a bond with him.

But, Cooper is Cooper. Autistic or not. Label or no label. He’s still Cooper.

I asked him to keep fighting for Cooper and raising him up.

That’s what we needed. People that believed in him. Believed in us.

And I left the room. I cried the whole drive home.

There was enough emotion in that once sentence, ‘I don’t think your son is autistic,’ to level me.

I knew in my heart it wasn’t true and hearing it out loud crushed me.

How dare he. Maybe I should’ve been happy. Or hopeful.

But hearing that my son wasn’t autistic had suddenly become just as painful as hearing he was autistic.

We’d come full circle.

Let’s talk About Special Needs Dads

It’s typically the special needs moms that are on the front lines.

We’re the lioness that roars if so much someone thinks about trespassing against our child, we’re making appointments, coordinating medical and adaptive equipment, we are generally the researchers and giving ourselves our own medical degrees specifically related to our child’s wellbeing.

We juggle everything in a day, our child’s needs, household chores, often times taking on additional roles with home-schooling and home therapy homework activities.

We’re nothing short of amazing.

But the dads – although perhaps sometimes taking a quieter role are no less than extraordinary.

We don’t talk about them enough.  They are in the background being the backbone of the family dynamic.

Often the unsung heroes that don’t nearly get the recognition for the distance they go to in order to be the very best dads possible.

They make countless sacrifices for their child with special needs and their families.

You will rarely ever ever hear a special needs dad complain.

They are the bricks that won’t fall, the shoulders moms need to cry on after numerous insurance defeats, the dads that carry the small bodies of their children on their backs, who are their voices when they cannot speak, who aim to show them the world despite physical limitations.

There is so much that special needs dads must give up.  First it’s the dreams for their child, then they slowly abandon their own dreams, goals and hobbies.

You’ll see race cars and hobby cars just sitting in garages that won’t run because there is no money or time any longer to devote to them.

You’ll see projects around the house maybe go unfinished or take longer to repair because they are more focused on building their child’s speech mount or trying to make an accessible ramp.

They are just as tired as the moms yet most bravely go off to work and bring home as much as they  can to continue financially providing for the family all the while their thoughts never waiver from the challenges and struggles that exist at home.

They pack more love in their hearts than one could ever imagine.

Sitting down in front of the television to watch your favorite shows, or off to have a night with out with the guys doesn’t happen.

They instead remain devoted to spoon feeding their child who cannot feed themselves, taking over for mom so she can sit down for twenty-minutes, dive into eight basketfuls of laundry because medical needs create more to wash.

Complaining is never in their cards, nor do they wish it to be.

Their child with special needs has become the center of their universe and they willingly and lovingly will go any distance to make their child’s life the best and brightest that it can be.

They have re-crafted their own dreams and hopes for the future.

And they never look back with regret nor remorse for the dreams they left behind.   And they may think that we moms perhaps never notice.

But we see and recognize it all and know that it’s the dads that help fuel us moms to be able to rise to the occasion every day and keep on keeping on.

Dads also are extremely creative and find loving ways to juggle all the needs that all of their children with different abilities have.

They can easily balance the act of building a puzzle with their typical child while assisting the other with a speech device; teaching one child to hit a baseball, while suiting up with the Upsee to help the other kick a soccer ball.

Special needs dads are a bit unlike special needs moms in that they generally grieve internally.

Special needs moms tend to be more vocal in their pain and in their joy, the struggles and difficulties that come along with special needs parenting.

You will rarely see a special needs dad participate or discuss their feelings openly in any support setting.  They process it all very differently but it still exists for them equally as a parent.

The pain is equal, the joy as profound, and the challenges just as obvious.

Yet how they carry the load is simply stoic.

Special needs dads are incredible people.

And even though they may not demonstrate the need, they are so deserving of a genuine friendship hug or a man to man pat on the back, someone to say that they see them even though they too often feel invisible on the journey.

To tell them that they are proud of the strong men that they are and the tremendous devotion and love that they pour into their families and children with special needs.

To remind them just how extraordinary they truly are.

I’m Not Ranting But Please Stop Using That Word!

I know many people feel like they’ve been bombarded with blog posts and articles online criticizing them for using the, “R Word.”

They feel that parents of children with disabilities are “too sensitive.”

This post isn’t one to belittle or chastise those in our lives that have used this word in our presence, or those that think we are hypersensitive.

It is rather an attempt to urge people to simply STOP using that word; to banish it from vocabulary altogether.

This is a post to educate and to turn moments where you may have nonchalantly used that word into teachable moments.

When I was younger, I’m sure I used that word in a joking manner.  I’m sure I laughed at that word when it was used in movies or on television shows.

In fact, I know I did.

While I can’t go back in time and change my past mishaps, I can move forward and share with the world why it was wrong.

Whether you are joking with friends in conversation, or sharing posts on Facebook using the “R Word”, you are unknowingly hurting others.

You probably aren’t vengeful or filled with hate, but you are inflicting wounds.

The word in itself means “characterized by a slowness or limitation in intellectual understanding and awareness, emotional development, academic progress, etc.”

Another definition for it is “slang –stupid or foolish.”  When my daughter was an infant, she was diagnosed with a rare genetic disorder, characterized by many traits.

One of those traits that forever stands out in my mind; one that I still remember staring harshly back at me from medical paperwork was “Moderate to severe Mental Retardation.”

From that moment on, I knew there was nothing funny, appropriate or acceptable about that word.

This word punched me in my gut and took away dreams and hopes that I had for my child, in an instant.

Although the reality can at times still be hard to swallow, the word has since been changed, thankfully, in medical literature to “having intellectual disabilities.”

Therefore, it shouldn’t be used anymore, ever, for any reason. Period.

When you call someone or something the “R Word”, you are saying they have intellectual disabilities.

My daughter is intellectually disabled, and I’m certain, beyond a shadow of a doubt, she wouldn’t find any humor in jokes at her expense, or at the expense of others.  Neither does her Momma.

She is also the most amazing, smart, strong and beautiful little girl I’ve ever known.

One of my proudest parental moments EVER was when her older brother was playing a video game online with friends and a child used that word.

He immediately called him out, shouting: “Dude! What did you say? That is NOT cool!”

If you do still use this harsh, hurtful, outdated word in your own vocabulary, or if you laugh with others that do, please understand why we ask you to stop.

Surely you don’t have someone in your life with disabilities.  Or, perhaps you do, but haven’t fully evolved to see the ache that the word creates.  I hope that you will.

I know that I am not alone in saying that parents of disabled children feel sickened, infuriated and heartbroken when people use that word in our presence.  And rightfully so.

We urge you to think twice before you say it…there’s no need for it.

We’d be very happy to never hear that word again.

Confessions of the Overly Organised

All the special needs moms perhaps in slight competition with each other.

Measuring their self-worth, accomplishments and mothering up against one another.

The dads gathering to around just waiting on the moms to give them direction and a task to complete.

While the episode was comical and perhaps exaggerated just a touch, it made some very valid points and was true to form on special needs parenting dynamics.

A new mom came into the support group.

She arrived bearing a hostess gift of a homemade cake with a handmade decorated box for the cake.

It immediately put the rest of the moms on high guard.  With lives that are so complicated most special needs moms struggle to accomplish making their lives resemble anything that looks like it’s in order.

So, when a new member comes into the group that seems to be able to do it all… makes the rest of the group feel inadequate.

This inevitably leads to tension when they relocate the special needs mom gathering to the new mother’s home only to find that her home is overly-organized, spotless and beautiful.

The rest of the special needs moms twinged in a big way and their feelings resulted in resentment and conflict towards the mom that appeared to be able to do it all – and do it perfectly.

And as I was sitting there watching it, I felt a tad guilty because I saw myself in that overly-organized mom.

It’s not because I can do it all, because I certainly wish I could, but can’t.

It’s not because I’m trying to be better than the next special needs mom, or that I think I’m in some way perfect.

My confession is that being overly- organized has become my coping mechanism, if you will, for coping with the stress of special needs parenting.

When your child’s diagnosis feels out of your hands, situations feel out of your hands, when you have zero control over things you wish you did – the only thing sometimes that relieves that stress or provides a moment of comfort is finding power over something you can control – and in my case that happens to be cleaning and organizing.

It’s the one thing I can control or fix.

So maybe my house sometimes looks like no one really lives in it or puts their feet in the couch (although I assure you that does happen), or maybe that my cabinets look like a picture on Pinterest, or that my closets are color coordinated and sorted by season.

But that doesn’t mean that I’m trying to display a show that I am in any way better than the next parent.

It’s simply become a comfortable way for me managing personal stress.

So the next time you’re measuring yourself up against another special needs mom, whether she seems to have the world put together, or one that has a dishevelled and messy home, remember we’re all on the same playing field.

We’re all doing our very best with some hard circumstances.

We juggle a lot and how we each handle things or how we cope will look differently.

Some moms turn to chocolate, some become compulsive exercisers, some over-organizers… none of us are better than the next nor are we trying to be.

Sometimes all we are doing is just trying to add order to our lives that feel like they can be chaos.

Be gentle and easy on yourself for whatever your “vice” is.

We all have one.  We all create it to help us get through the day.

And remember not to be critical of someone else’s way of finding order, or giving themselves a small piece of comfort.

We are all just as special and unique as our children are.