Summer Days

It’s that time of year again where we get to take some time out of routine.

Gone are the rushed early mornings, the, ‘oh no I forgot to get sandwich fillers for lunches’, and the panic over the school phone number flashing up on your phone..

Oh yes, it is Summer.

Summer is supposed to be a time for us all to relax, a time for being together, a time for fun, a time for adventure, camps, camping, water parks and everything in between…

Well, that’s what society, Instagram, Pinterest and bloggers tell us anyway.

But for my family and me, Summer is without a doubt the worst of the school holidays; at least with Christmas they get new stuff to keep them semi entertained and quiet, the nasty weather helps ease that mammy guilt of, ‘not doing enough with the kids’, feeling.

We, ‘should’, ourselves way, way too much.

We see the pictures of all the holiday going families and we think we ‘should’ be doing that or at least trying to.

We see the ‘perfect’ family all playing nicely together out the back garden and we ‘should’ ourselves, we should be doing that too without the fighting, crying, arguing…

We, ‘should’, ourselves way, way too much.

I gave up, ‘should-ing’ ,myself recently and I highly, highly recommend it.

When I feel a should creeping into my thoughts, I tell it to leave.

It is liberating.

I am doing my best.

We don’t go on many days out as a family of five, but when we do, we ensure it’s suitable for all our family, not just a typical family.

There are days when it’s just the four of us as Ethan is in respite, even then we scope places out for accessibility, wondering if we could bring Ethan next time.

We spend most of the Summer at home.

I let them run wild.

I let them away with not eating dinner.

I let them fight and shout while I pretend I can’t hear them, I will only intervene if there’s a blood curdling scream, you know, that scream?!

I give them ice cream after ice cream.

I buy water guns and let them go ‘mad’.

At the weekends we try to get out as a family of five, sometimes we argue all the way there and back and other times we sing crazy songs in the car.

Sometimes the best part of the trip is the car ride …

I hide in the bathroom, praying for the day to speed up.

I try to convince them that 10am is a perfect time to watch a family movie.

I make milkshakes, just to get rid of the almost but not quite rotting fruit.

We play catch the flies, which, by the way, burns a lot of their energy.

If they are bored, I give them jobs.

If they complain, I take away toys, mobile phones and ice creams.

When I feel guilty for not doing enough with them, I play a game of superheroes, Lego, burping, wrestling or we draw and colour.

I have bought more outdoor toys than I care to recall just so they feel like they are out all day, even if it’s only the back garden or local park.

I am doing my best and that OK with me.

There won’t ever be a family holiday for us five, those days have gone and that’s something which is hard to admit.

We don’t go too far on our days out because we can’t, but we do our best to ensure that there are days out.

I wrote a blog at the end of Summer last year about all the places we visited over the Summer, (which was originally planned just for me to keep track of the places which suited Ethan).

I published it when someone asked me about a picture of Ethan I had shared.

Families like mine were so delighted to finally read an inclusive list of places, telling them what to expect when visiting.

I was honest and open in every review and told each place we visited that I would write about them.

Some were delighted. Some were a tad anxious, but I assured them that I was merely looking for places where a wheelchair wasn’t an issue and a place to change my son, if needs be.

Sadly, not one of these places had a, ‘Place to Change’, bathroom however, most did have a disabled toilet.

I was sick of reading about family friendly places to visit which in my eyes were family friendly places to visit when you have a typical family.

I got sick of clicking a link and seeing it wasn’t suitable at all for my family.

“Someone should do a list which is actually family friendly regardless of ability” I moaned out loud.

“You’d be ideal. Maybe you should be the one to do that” my husband suggested.

That’s the moment I learned the difference between good should-ing and bad should-ing…

While the bad should-ing does enter my mind, I try to focus on the good should-ing…

I should play with my kids while they still want me to,

I should spend time doing nothing with them,

I should spend time planning a great day out for us all,

I should relax out the back garden and let them draw around my body like they’ve discovered a dead person, (it’s not a bad game, I have to lay still, it’s actually very relaxing!)

I should ignore the picture-perfect family splashed all over Facebook,

I should delete Pinterest too….

I am sure you get the idea, I hope you all enjoy your Summer as best you can with the life you have….

All any of us really should do is make the most out of what we have right here and right now.

Happy Summer… which is over in six weeks, but who’s counting?!

A Season To Remember

June concluded the end of Oliver’s very first season playing baseball!

He finally was of age to participate in our local organization, Little League baseball.

He was supplied with his very own hat, jersey, and we purchased the tiniest bat and helmet we could find.

Our previous experiences with sports were tremendous, unfortunately it was a lot for Oliver to handle with so many people he did not know around, and directing him on how to play.

The point would be for the parents to finally be able to sit, while a buddy would help your child around on the field.

This was to allow us to watch our children play, instead of being the one’s by their side.

A nice little, break!

Some kids, although not all, were in wheelchairs, some in walkers, other assistive devices, or none at all.

Oliver used his wheelchair, and his buddy would assist him around the field, pushing him to the ball, the goal, or just to be by his side for support.

Our problem, was that Oliver at the time did NOT like anyone he did not know pushing him while mommy or daddy was off almost out of sight.

Once he lost sight of us, he would just bawl.

Bawl, until one of us came back to his aide.

It did not make the season any less enjoyable, but we had then decided to take a break from sports so that we did not give him a bad stigma on them.

When baseball popped up as an option, I just had to give it a shot!

I thought it wouldn’t be much of a loss if we encountered that same problem, as everyone is so understanding.

As tryouts rolled around, I was nervous but stuck by his side to prevent meltdowns.

But, guess what?!

Oliver found a friend the very first day, who ended up being his buddy/coach for the whole season, and he did soooo well.

I was able to not only watch from the sides as he wowed everyone with his throwing skills and muscles, but take a seat during game times and watch the WHOLE game without one breakdown.

I was never more proud of him, then on those game days when he could independently (for the most part) get out on the field, hit the ball and zip to each and every base out there.

I just love that even in a small city (compared to our surrounding cities) like ours, we have these options for our kiddos to enjoy and experience.

Not only that, but I am so grateful for the people who donate their own time and resources to providing the best days and memories for the children as well as their family members.

Thank you guys for all that you do, and thank you for one GREAT season.

Here’s to the next!!

US Accessible Theme Parks

At Firefly, we know how difficult it can be for some Special Needs families to have a care-free family fun day.

Fortunately, across America, some theme parks are adapting to become more inclusive for all families, ensuring every child can have a fun day out, and not be excluded.

Six Flags

Earlier this year Six Flags Great Adventure, in New Jersey, held a, “Sensory-Friendly Autism Day”.

Designated decompression areas included iPads and the lights and music were adjusted to create a friendlier environment.

Resources and presentations were given throughout the day and, in addition, specially-trained staff were on hand.

The event was ticket-only – even season pass holders had to pay in!

But the purpose of the special day was to educate, fund-raise and introduce families to highly-trained special education staff from the Gersh Academy.

Legoland

Since 2016, Legoland Florida Resort in Winter Haven, FL has been quietly adapting to become more accessible to families of all shapes and sizes.

One such example is the ‘Hero Pass’.

Guests on the spectrum can get a ‘Blue Hero Pass’, at no additional cost, ensuring the child’s entire group can get accelerated access to some of the site’s most popular attractions.

Those with mobility difficulties can also obtain a ‘Hero Pass’ and everyone can access the extremely helpful guide online to inform them of the most suitable rides.

There are also guides to let parents and carers know what to expect, in terms of noise and lighting, for each ride.

The park even has quiet rooms with sensory toys, noise-cancelling headphones and, unsurprisingly, Lego building tables.

All newly-hired staff, or “Model Citizens” as they are called, are trained to be able to effectively interact with guests on the autistic spectrum and their families.

Throughout April (World Autism Month), Legoland even contribute a percentage of ticket sales to Autism Speaks, and light up certain areas of the resort in blue.

Edaville Family Theme Park

An April 2007 study from the National Autistic Society found that children with autism associate with,  “Thomas the Tank Engine”, more than any other children’s character.

The study posited that the reason was the simplistic emotions on the faces of the characters.

In years since it’s been theorised that the crashing and smashing of the trains proves engaging, as well as the appeal of the organisational structure of trains.

No wonder parents of children with autism flock to the Edaville Family Theme Park which includes, “Thomas Land”, as well as, “Dino Land”.

The Park teams up with local non-profits, schools and programs that help kids with autism to educate and encourage inclusivity.

The site also has a huge Autism weekend for families as well as a permanent quiet cart on one of their trains, as well as quiet rooms and areas for kids to, “run their wiggles out”.

Sesame Place

There was huge excitement in the autism community when Julia, the first Sesame Street resident with autism, arrived on the scene.

Perhaps even more exciting for families with children on the autism spectrum was that Sesame Place in Pennsylvania became the first theme park, worldwide, to be designated as a Certified Autism Centre.

Staff receive training in sensory awareness, motor skills, autism overview, program development, social skills, communication, environment, and emotional awareness.

Sesame Place has a Ride Accessibility Program, matching each guest to the requirements of each ride.

This can also include priority boarding and queuing, ‘virtually’, so they can enjoy other activities as they wait.

The park also provides noise-cancelling headphones as well as access to their quiet rooms.

Low sensory areas can be found around the park in addition to low sensory parade viewing areas and special meet and greets with Julia herself!

Dollywood

Dolly Parton has a long history of philanthropy, with her Imagination Library recently donating its 100 millionth book.

Dollywood, proudly claim their Calming Room, to be the first of its kind in the world.

The room, opened in the Pigeon Forge, TN park in 2016, includes weighted blankets, sensory toys used in therapy programs and softly glowing lights.

The website also includes a “walkthrough guide” helping guests to know what will happen on their visit.

Holiday World

Another location with a calming room is Holiday World in Santa Claus, Indiana.

The room includes beanbag and rocking chairs, a tent and adjustable lighting.

The room can be reserved for 30-minute sessions, ensuring families are left to themselves during their scheduled time.

Furthermore, Holiday World also hosts ‘Play Day’, an annual and exclusive occasion that lets children with difficulties, including those who are wheelchair-bound, enjoy the rides.

Proceeds from the event are donated to Easterseals.

Cedar Fair Entertainment Company

Each of the eleven parks owned by the Cedar Fair Entertainment Company include Ride Boarding Passes for those with issues with mobility or are on the Autism spectrum.

These parks include California’s Great America, Carowinds in Charlotte NC, Kings Island, Mason OH and, the original, Cedar Point in Sandusky, OH.

The parks can also arrange for their shows to provide ASL interpretation, if informed a week in advance.

Alternate entrances can also be provided.

Disney

Disneyland and Disney World provide a Disability Access Service Card. The DAS card allows those who are unable to queue to receive return times for rides.

Once the guest’s party finish a ride they can obtain another card, similar to how the FastPass service works.

Disney Parks have responded to criticism that abuse of the system was becoming difficult to control and readjusted the system.

Additional resources and information packs can also be provided.

Morgan’s Wonderland

While all the parks mentioned above have made leaps and bounds to become more inclusive, Morgan’s Wonderland is the only theme park specifically designed for children with special needs from the ground up.

In 2005, Gordon Hartman sold his businesses in order for him and his wife, Maggie to focus their time and efforts into The Gordon Hartman Family Foundation.

In 2010 they opened Morgan’s Wonderland, named for their daughter.

It offers free admission to guests with special needs and is entirely wheelchair-accessible.

Even the water park extension, Morgan’s Inspiration Island, offers heated water and waterproof wheelchairs and wristbands.

Next to the park you’ll find The Academy at Morgan’s Wonderland, a school for students with special needs that the Hartmans opened in August 2011 which helps students from 12 to 24 to reach their full individual potential.

 

*Whilst all parks listed are accessible or autism-friendly, we advise calling beforehand to make sure the park will be able to cater for your family’s individual needs.

Road Tripping: What We Have Learned From Our Family Vacations

Summer is here, and school is out; it’s the prime time for family vacations.

Travelling with kids is always an undertaking but taking a trip with children who have a variety of medical and behavioural needs can be just plain daunting.

Some of our trips have gone smoothly; some not so much, and there are many things that I’ve learned from our experiences.

Road trips have been our preferred method of travel for years for a variety of reasons; number one is that I can envision us ending up in the news as one of those families who had to be removed from a flight due to an unruly child.

We had an episode over a decade ago on a cross-country flight with our oldest son where he screamed in his seat for most of the flight.

We have since had three more children; two of whom have sensory and behavioural issues, and the thought of having to manoeuvre them through the strict TSA security, let alone potentially deal with epic meltdowns at thirty thousand feet makes me a little queasy.

So when we want to get away, our minivan gets us where we need to go!

The minivan also allows us to bring a weeks supply (or more) of our daughter Lilly’s nutritional formula without having to worry about it getting lost en route to our destination, and any meltdowns to be had can be calmed and comforted without the usual side eyes and dirty looks from judgemental strangers.

In addition to Lilly’s formula and tube feeding supplies, we also have our son Chance’s trach supplies and his cumbersome suction machine.

I would rather stash those on the floor on the minivan any day than have to haul that load across a busy airport.

Regardless of the method of travel, I have found that planning ahead is imperative.

I start making my packing lists about two weeks ahead of time, and I also keep a copy of the list in one of our bags so I can check that we have everything when it’s time to leave.

We have to pack a little more than most with all of our kids’ medical equipment, supplies, and medication, and I don’t want to realize halfway to or from our destination that we’ve forgotten something crucial.

I also pack a car-sick kit into our medical emergency bag, plus some extra trash bags and towels for easy cleanup. We learned the hard way how necessary this was after an unfortunate projectile vomiting episode on a remote stretch of road, with the nearest gas station more than 20 miles away.

That was the last time I tried to do a tube feeding in a moving car- lesson learned!

We’ve taken to splurging on hotels that have in-room kitchens, so we can save a little money on meals and avoid meltdowns in restaurants after a long day on the road.

It’s also nice to have extra counter space to sort out all the medical supplies and prescriptions and keep them somewhat organised (as opposed to rummaging through several Ziploc bags in a suitcase- looking for the one you need that is inevitably at the very bottom).

Additionally, it’s a relief to have space for all the kids to get their wiggles out after being in the car all day.

Having to repeatedly tell them to settle down every two minutes, as we discreetly try to tube feed their sister or suction their bother’s trach tube in a public eating place gets weary very fast.

Lilly has certain triggers that will almost certainly guarantee a meltdown, and while some things cannot be anticipated, we’ve found that the more prepared we are about where we’re going and what we’re doing, the better it is for everyone.

If we are going somewhere unfamiliar, I research all I can about it.

We do social stories to prepare her to ward off anxiety and fear of the unknown.

This helps a lot, but of course, there have been occasions where we think we’ve nailed it only to have something happen that snaps us back to reality.

After a great morning at Universal Studios earlier this year, all heck broke loose when Lilly tried playing a carnival-type game that she just couldn’t win.

Frustration turned into a full-blown meltdown in the middle of Super Silly Fun Land, and we had to pack everything up and call it a day a few hours earlier than we’d planned.

It’s exasperating moments like this that make us question why we take our kids anywhere, ever.

Once some time has passed, and we’ve collected ourselves, we remember that this is just another life lesson.

We learn from it, and we strategize about what we can do differently next time to make it better.

We try and remember that for all the stares we’ve gotten when doing medical care for our kids on the go, there have been many kind words, genuine questions, and encouragement from complete strangers.

So, despite the difficulties, we will keep doing what we do, having new adventures, and keep learning new things along the way!

The Stares of Strangers

My daughter collapsed the other day and broke her arm.

As expected the hospital asked how it happened.

I repeated the story to the trauma nurse, to the x-ray technician, to the consultant and to the nurse that did the cast.

They all had a puzzled look on their face as I said her muscles and nerves just stop working for no reason, I explained that she is under the specialist children’s hospital and these ‘episodes’ are under investigation.

After reading through the notes they nodded and had sympathy for me, rather than looking at me like I neglected my child.

My daughter then had a cast on her arm for the next 3 weeks.

3 weeks of strangers looking at me with different expressions ranging from sympathy to disgust that my toddler had a broken arm.

I realised that this is going to happen for the rest of my daughter’s life.

She is mentally delayed and she will probably need a wheelchair or at least a walking aid, and yet she looks perfectly healthy.

On a bad day though she can not move at all and she is like a new born again.

Apparently, it takes 5 seconds to make a first impression, and in those 5 seconds the look on your face is going to happen especially if you are judging a stranger.

However, for the stranger that look, especially of disgust, will last so much longer.

I will never be able to get those looks out of my head.

My daughter will always have to deal and cope with these looks and stares and it angers me that she has to deal with these.

My other children have already experienced the negative looks and have started to ask questions about why people stare and talk about their sister.

I have no experience of this negative aspect of human nature and I don’t know what to say to my children.

I try and stay positive and explain that they don’t understand the condition and so stare.

That we don’t have time to explain to every stranger that stares at us the health problems of their sister and so we just have to carry on as normal and ignore them.

That doesn’t erase the memories of the stares and negative comments.

Before having my daughter, I wasn’t very thick skinned, but she has taught me to be strong and unfortunately get a thick skin.

A Child’s Happiness

For this blog post I’m going to need the readers to use their imagination…

Just close your eyes and think…

You’re 2 and a half years old, your mind right now is like a sponge, taking everything in and all you want to do is explore the world!

“What’s that over there”

“what does that do”

“I need to go do that!”

“Mummy’s going over there, I’m going to see what she’s doing” but wait a minute…

You can’t, you know what you want to do so why is your body stopping you?

You see everyone else walking about, picking up toys and exploring the environment around them why can’t you do that?

You may be somewhere new and just want to run and hide behind mummy but you can’t.

You become confused, upset, frustrated.

That is the everyday reality for little Wilson.

His mind works in the same way as any other toddler, he can talk and has an amazing understanding of everything but physically isn’t able to sit up, crawl, move around, walk and even struggles with his hands with some tasks, it’s the one part of his brain that unfortunately became damaged when he was born prematurely.

Anyone who has a child (especially a boy!) will know that they get into EVERYTHING, they will turn your house upside down.

Sometimes you’ll get a bit annoyed with this and lose your patience after saying “please don’t do that!” for the 100th time that day, but imagine your child couldn’t do any of that…

You probably haven’t ever thought about it, you’ve never had to!

And I’ll be honest, I had genuinely never really heard of Cerebral Palsy before Wilson was diagnosed, I had never seen a child not being able to walk when they should be able to so I never even realised it was an issue for some!

The reality is that unfortunately it is, for thousands of children, Wilson being just one of them.

However, saying all this doesn’t mean I want people feeling sorry for my son, or feeling sorry for me or the people around him, because that is THE LAST thing I want.

What I want is for my son to be happy and despite all the difficulties he faces he IS happy and I’ll do everything in my power to ensure he always is.

Yes, he can get frustrated but I’ve always tried to not let him know that he is any different from anyone else his age.

He does know, I can tell he does but has never once questioned it to me.

We have been lucky enough to discover various different pieces of equipment to ensure he never gets left out of any activity that his big sister or friends at nursery are doing and things might take a bit longer to do but we always manage to find a way around it!

Let’s just say my arm muscles are very impressive from all the carrying around, but for as long as I physically can, I will run around the park with him chasing his big sister, I’ll carry him down to the kitchen so we can bake cakes, I’ll jump him up and down on the bouncy castle and I’ll take his splints and footwear off to let him splash in the water just to hear him laugh.

Such simple things but it’s these that matter the most because, as any parent will agree with me, your child’s happiness is the more important than anything else I can think of and if my child is happy then I’ve done something right.

To My Children With Special Needs

We have been through a lot together.

Together we have cried hard and loved harder.

We have been side-by-side in the valley, on the mountaintop, and every place in between.

You have taught me more than all my years of school and every book I’ve read, combined.

You have peeled back the mask on humanity and exposed to me both the beauty and the darkness of the human heart.

Your smile has gifted me with the strength I needed to push through impossible days, and your dependence has reminded me how fulfilling it is to live beyond my own selfish desires.

I’ve held you as you have brushed against death and I’ve witnessed your fierce will to live.

You have been my hero–the embodiment of strength and bravery that I can only dream of becoming.

You have reminded me that so much of what this world deems valuable is worthless rubbish in comparison to the beauty of the few things that last for eternity.

You have a way of unveiling raw intentions and motives, teaching me which relationships are worth fighting for and which ones are best to let go.

Because of you, I love your (foster) daddy more than I ever thought possible.

I love the way you dance without restraint, speak the truth in a hundred different ways, and laugh hysterically during the quiet part of the church service.

I love how you are truly unphased by what other people think and instead live fully from your heart.

I love how goals, restrictions, expectations, and limits are meaningless to you.

You take one day at a time and take each new joy and challenge in stride, reaching heights above anything anyone could have anticipated.

When I feel lonely, you snuggle in close and tell me I am loved in a million ways without saying a single word.

When I feel like I’ve failed, your life reminds me of purpose and grace.

When I feel afraid, you flash me a grin and your bravery seeps into my soul.

I love how you have never judged another, but lavish love on all—even those who don’t return it.

You exchange kindness for hatred, you smile at those who ignore you, and you don’t take to heart those who underestimate and criticize you.

You have grown in me an immense appreciation for simplicity and sweet mundane moments with the ones I love most.

You have taught me to fight, to be a mama bear, and to not accept failure.

When my selfishness takes over and bitterness nips at my heart and mind, you never hesitate to forgive me and love me completely in return.

You, more than anyone, have taught me who Jesus is; how much I need Him; and how much He loves us.

He was so good to share you with me.

I hope you always know without a doubt that you are one of the most beautiful things I could have encountered on this side of heaven.

You are brave.

You are funny.

You are unique.

You are mighty.

You are kind, humble, and real.

You are YOU.

I look up to you and I am so very of proud you.

With so much love,

Your (foster) Mom