Why Fit In?

I don’t want Ethan to grow up feeling that being different is a negative thing.

I want him to grow up knowing that what makes him different also makes him special.

We live in a world filled with images ingrained in us of what a picture perfect life looks like, but its not real, and it’s basically unattainable.

Our life isn’t picture perfect, but it’s real, raw and filled with challenges and most importantly, an incredible amount of love. 

When I look at my son, I don’t see normal, but what I do see is extraordinary.

My two and a half year old son has taught me so much about the beauty in being different and unique.

For as long as I can remember, I was so concerned about fitting in and appearing as normal as possible.

I no longer see anything negative in this, and I am finding I care less and less about impressing others. 

Once you let go of the idea of what’s considered, “normal”, you open yourself up to the beauty in diversity.

We spend too much of our time worrying about what’s perfect that it can rob you of enjoying your life now.

Ethan’s three year old cousin once asked their Grandma if she could bring him some frozen yogurt.

She told her that he couldn’t because Ethan ate through a feeding tube inserted in his tummy. His little cousin responded with, “Oh, okay.”

No more questions asked.

Acceptance, plain and simple. When did we learn to treat and/or judge others because of their differences? I think we could all learn from seeing the world through children’s eyes.

What makes Ethan different make him unique, this goes for everyone.

Every person on this earth has something special about them that no one else has. I want Ethan to know that, not just because of his rare condition, but because I don’t want that to define him.

I don’t want other people to see him for that either. Yes, we are doing our best to bring awareness for his condition, but he is not his condition. 

I want him to grow up with a confident and positive self image.

I want him to know that he helped me to redefine my idea of what a happy and fulfilling life is. I used to worry about sharing anything that wasn’t positive, “cool”, or happy.

It’s not about appearing to have the perfect life, it’s appreciating all the imperfections in life and seeing the blessings in each day.

This kid gives his love so freely.

He reminds me that it’s much better to give love than to limit yourself.

Seriously, he signs, “I love you”, to people he has just met and blows kisses, and at one point I thought – maybe I should teach him to reserve this for close family & friends.

Then I thought, No, he is giving love without reservations and that’s something we all could use a little more of.

Uncomplicated and innocent love.

Ethan isn’t normal but neither are you and neither am I. Describing him as anything but normal is no longer an issue, in fact it’s compliment!

We should all be proud of our uniqueness and embrace it to empower ourselves to do more.

Don’t waste another day being anything but yourself.

All In The Same Boat

Pondering how to muster new words, I asked my husband where he thought I should start a monthly musing.

“At the beginning,” was his flippant reply.

And just before I dismissed this as a tricky-topic-to-tackle-another-time, I remembered Welcome to Holland by Perl Kingsley, the story that gets handed out on day one to many of us.

“There’s been change in the flight plan and they’ve landed in Holland and that is where you must stay. You must buy new guide books and learn a whole new language.”

“The pain of not going to Italy will never, ever go away but if you spend your life mourning the fact you may never be free to enjoy the very special place, the very lovely things… about Holland.”

Many parents gain enormous comfort from its words, and perhaps it was just thrust at us too soon, or in a vain attempt to fix everything on day one, but somehow I have always shied away from it.

I clearly recall simultaneously thinking we’d never travel as a family again, and that it was bitterly ironic to try to explain that to me with a travel story.

Telling us that our life wasn’t heading where we’d planned was crushing to me at that time.

Now, with high termination rates for babies with Down’s syndrome and a law which allows the euthanasia of disabled babies up to 60 days after birth in Holland, the parallel with landing there seems even more ironic.

So how would I tell my new parent self differently?

I‘d say that I would still be heading to the same dream location I had planned all along.

One full of colour and ever-changing diversity. Nothing about becoming a parent had really altered after all, the same goals of happiness, friendship, love, togetherness and sharing our world with a small new person were the same.

There would always have been worry and tiredness and self-doubt along the way.

What had changed was how we were going to get to this destination. Our mode of transport had shifted from a jet plane flying high above the clouds, to a gently meandering paddle steamer.

Each SEND parent passenger is unique, just as our children aren’t created like neatly-stacked boarding passes, and the view from each seat varies.

Some of us prefer to hum to Adele on our headphones en route, while others choose to engage in conversation with their fellows.

There’s always a confident one at the helm and outside crew are present to make our journey more comfortable.

Some get travel sick before they find their sea legs.

Others are angry about the perceived downgrade and the length of time the journey will take in comparison.

The wise, however, immediately use the extra time to enjoy a pot of tea and invite the wary to their table.

Some are lucky enough to know someone aboard already. Others are experienced sailors.

But despite the eclectic mix in that vessel, we are all heading in the same direction.

As one unit we cut through the waves – to a place where inclusion, equality, support and acceptance of our children is standard.

There might be someone who nabs a sun lounger with a towel once in a while, but they are outnumbered by people who care about stopping you from falling overboard when the waters get choppy.

I for one am glad I’m in this boat. And I am glad that I am in it with you all.

If you aren’t familar with Welcome to Holland, you can read it here.

Summer Emotions

It’s a time of disconnection, it’s a time when you don’t feel like doing therapy, or attending a friend’s barbeque, or engaging in your typical special need support groups. 

Yearning for a hint of fun – a hint of the familiar normal that once existed. You’d rather sit in the sun, watch the flowers bloom and the grass grow. 

You want to go on long walks, find a way to hike on accessible trails with your child, and to feel alive. 

With summer comes complicated emotions that we try to suppress. 

You’ll see the neighborhood child across the street learning to ride a bike without training wheels and their parents cheering them on. 

You wish that was your child too, knowing that they’ll never be able to ride a bike or be able to even attempt to pedal a bike. 

You will see a child throw a ball or play tennis in the street. 

Typical children are out playing in parks, your field of vision is filled with children do all the things your child can’t and may likely never well be able to do. 

It stings and burns and hurts something fierce. You camouflage those feelings so no one sees the pain in your eyes or detects the pain. 

Many special needs parents do what comes naturally. They purposefully withdraw from others.

 It starts slow. Perhaps you become less respondent to emails and phone calls, then it expands to not verbally wanting to discuss how you are feeling or events in your life with others, and sometimes this even carries over to your spouse where you feel too exhausted to go over the day’s events, how your child did in therapy, or how you are feeling because after all the weight of the world is on your shoulder. 

The heat intensifies the flame and the burning in your heart. 

It becomes an irritant, even more so when you have a child that can’t regulate body temperature and has sensitivities to the sun that make you feel like you might as well be a Vampire family, only coming out at night. 

The summertime can be a blaring reminder of how cheated we feel. 

We question why us? Why me? Why my child? More than we do during other seasons. 

We long for a normal vacation without planning like the world is ending and you’re packing everything your child owns into a small vehicle just for an overnight stay at a hotel.

And all we can do is acknowledge that we are having these feelings – these perfectly acceptable and normal feelings. 

These summer emotions can get the best of us if we stew on them too long. 

When I feel any of these feelings creeping up on me the best relief comes in shifting my focus to something else. 

Distractions are good, finding time at the end of the evening to read an inspirational book, finding a fun activity that the whole family can participate in, sometimes not opening your front blinds so you don’t have to watch the neighbor child learning to ride a bike…

…whatever it takes to put those hot summer emotions on ice.    

Launch of the GoTo Shop Trolley

The GoTo Shop Trolley is currently being rolled out across the UK by some of the major supermarkets and it is set to transform shopping trips for many families.

It will make shopping easier for parents and carers of children with disabilities and more comfortable for the child.

The trolley seat comes with a secure 5 point harness, padded seat and open front for easy transfer.

Over 1500 trolleys have been ordered by supermarket chains including Tesco, ASDA, Sainsbury’s and Dunnes.

Local mother Emmy Heaton, whose 3 year old son, AJ, has cerebral palsy, has been successfully campaigning for her local supermarket to offer the Go To Shop trolley.

She says the importance of the new shopping trolley cannot be underestimated; “For parents of disabled children, it is the little things that make a big difference.

Shopping trips can often be a major – if not impossible task – for parents and this trolley is exactly what is needed.

Shopping used to be such a stressful experience for me but the new trolley makes a genuine difference.

She added, “It’s great to see that supermarkets across Northern Ireland and beyond, are recognising the vital need for these trolleys.

I asked my local supermarket to offer the trolley and they were very obliging so I would encourage families to ask their local stores and join the #EverySupermarket campaign.”

Claire Smyth, past Firefly Community Manager, said, “We are delighted that shopping excursions are being transformed for families.

It is wonderful that families now have access to this trolley at a number of supermarket chains.

We have a strong community at Firefly and parents are continuously sharing the challenges they face with simple tasks like grocery shopping.

As we have seen with the Upsee, it is the simple products that improve everyday life which are the most effective.

This trolley is much needed and a real game changer for families, making shopping not just possible but enjoyable too.”

To find out if there is a GoTo Shop Trolley in your local supermarket, check the Firefly Finder.

To request one, please ask the store manager to consider getting one in.

For more information on the campaign and how to get involved, visit here.

Inspirational Quotes for the Special Needs Parent!

On the other hand, being the parent of a special needs child can also be fun, happy, exhilarating, invigorating, energizing, exciting, fantastic, and amazing!

Special needs parents live their lives on an emotional roller coaster.

When things are going good and our kids are happy and healthy we have our mountaintop experiences.

At other times we may find ourselves down in the lowest valleys.

Sometimes we need a little help climbing out of our valleys of despair and despondency and for that very purpose, I’ve put together this little list of 15 inspirational quotes for special needs parents. Some of them are even my very own quotes!!

“Parents of children with special needs create their own world of happiness and believe in things that others cannot yet see.”- Author Unknown

“Some of our kids got a bum deal in life and I know it might seem impossible, but try as hard as you can to turn your child’s crappy into happy”- Sylvia Phillips

“As special needs parents we don’t have the power to make life, “fair,” but we do have the power to make life joyful.”- Author Unknown

“Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s going to be a way through it.”- Michael J. Fox

“Every tiny little step forward is a major accomplishment to special needs parents and cause for celebration!”- Sylvia Phillips

“Life is tough, my darling, but so are you.”- Stephanie Bennett Henry

“Listen to the experts. Glean what works for you and your child, but remember, ultimately, you are the expert on your own child. No one else.”- Sylvia Phillips

“We must be willing to let go of the life we have planned so as to have the life that is waiting for us!”- E.M. Forster

“Buck up, Buttercup”- Author Unknown

“Celebrate and cherish all of life’s ordinary, everyday, precious little moments” -Sylvia Phillips

“People with special needs are not as different from you and me as you might think. They want the same things we want: to love and be loved, and to be accepted, appreciated, and included.”- Sylvia Phillips

“Knowledge of what is possible is the beginning of happiness”- George Santayana

“Hang on tight and get ready for the wildest, saddest, happiest, most challenging and most rewarding ride of your life!”- Sylvia Phillips

“In the end, I am the only one who can give my children a happy mother who loves life.”- Janene Wolsey Baadsgard

“Always hope for a miracle, but don’t ignore the reality of the situation.”- Sylvia Phillips