Holiday Parks – Not As Accessible As You’d Think!

We selected the Devon Cliffs site, who offer adapted caravans for wheelchair users.

Sadly when we called none were available however the staff assured us that a Deluxe of Prestige caravan would give us the space we needed with the wheelchair.

Erm… let us just say this wasn’t the case!

We stayed in a Deluxe caravan, with the WAV parked a short distance away in a designated space. So far, so good.

We were aware that there would be a few steps to get into the caravan so although not ideal, this wasn’t a major issue.

However, once in the caravan, it was obvious that space would be a problem.

Sam’s wheelchair was too wide to get it through the corridor and into the bedroom; the twin bedroom where he would be staying was too small to use a mobile hoist.

If nothing else however, life with Sam has taught us to be adaptable… fortunately we had brought his air bed with us, so we adapted the caravan.

You’d be amazed how comfortable those sofas are to sleep on!

The site itself was stunning, very well kept and clean. We couldn’t fault the staff at all, who were wonderful with the little dude.

The children’s activities were varied through the week so we decided to try the messy play session and the family bingo.

Again the staff were lovely, however the volume level was apparently set to STUN, many of the, ‘typical’, children were finding it far too loud and overstimulating and even the parents were starting to cringe slightly.

After painting, we decided to go on a little adventure looking around the park – although a hilly site, it was easy to move around with the wheelchair, with the shops and cafes etc. accessible via ramps or level access.

Big tick there!

Sadly, the swimming pool was not as successful – while the pool itself was easy access with a gently sloping entry to the water, the changing facilities were nothing short of useless.

The disabled change consisted of nothing more than an empty room with a wall mounted chair; no changing bench, loo or shower.

In the end, as we’d promised him we’d take him swimming we battled into one of the normal changing rooms and laid him on the narrow bench to change him… spot on que, the Dude kicked into a full on seizure – his Dad pretty much spread his arms across Sam’s body to stop him falling off the bench while I had my hand between Sam’s head and the wall/bench to save him from cracking his head during the convulsions.

All in all, not a successful attempt.

In fact it was so difficult, that we only attempted swimming once the entire week we were there.

In a nutshell – if you have mobile children then this is a wonderful Park to visit.

Sadly, if like us you have a child with very severe issues, it really isn’t.

How Do We Let Go… Even Just A Little?

The weather had been glorious for a couple of days; I returned home from work, and backed up onto the drive.

I heard my son’s voice all loud and excited but not coming from inside the house, “Hi mum, I’m playing on the green with my friends,” as he rushed over in my direction.

I smiled nervously as he ran off again a few meters away.

He was playing with three young boys that live on our street, I’d say a couple of years older than him who we have in the past exchanged pleasant smiles with.

He has asked to go out to play in the past but I always said no.

I felt instantly sick and anxious and my mind went into overdrive:

“What if they are horrible to him?”

“What if they don’t include him?”

“Should I go and tell them he is autistic?”

“Should I go and stand and watch them play?”

“I know, I’ll give them all a treat!”

So I went into the house where the door was propped open and was greeted by my granny, she said, “Don’t worry, don’t shout, he wanted to play with them and we can safely see and hear him with the door open!”

I know that she’s right but I couldn’t rid that tension from the pit of my stomach.

I grabbed them all an ice cream from the freezer and a fruit shoot drink each and walked out to them, “Here you go boys, a nice treat for playing nicely.” I told Cameron that I would prepare his tea and at that point he could come in.

I returned to my house and stood in the entrance and took a few minute to listen to them play:

“Let Cameron take a shot,” said one of the boys.

“Cameron you stand over there and kick the ball into the net,” said the other.

My baby, well, not baby – he’s 8 in a few days – my young man is playing outside for the first time, he is playing with people that don’t know about his condition and he is being accepted and acknowledged.

Yes, OK he is the loudest of the lot of them but I’m just enjoying this major milestone with happy tears in my eyes.

I rushed to make his tea so I could bring him in to the safety and comfort of our home; I thanked the boys for looking after him and playing together so nicely.

Cameron enjoyed it so much and was talking about it all evening and how he wanted it to be sunny again tomorrow so he can play back outside.

With that statement that pang of anxiety returned to my stomach.

How do we let go….. Just a little?!!

I’m trying; I really am, it’s not just Cameron growing and learning on this journey – I am too.

The Summertime Blues (Eddie Cochran)

For working parents of any children, summer poses a unique set of problems, sometimes expensive, problems.

What do you do with your children for two months?

Being one of two working parents of a special needs child, summer is made even more difficult.

Despite offerings of countless camps and summer programs that cover every interest under the sun offered during the summer, most of these amazing sounding camps and programs don’t accept children with special needs.

Some camps are simply not wheelchair accessible.

Some don’t have facilities that can accommodate personal needs.

Some are simply afraid of kids like mine.

No matter where I send my son, I need to also send adult support, someone who can help him access everything and who can manage his physical and personal needs throughout the day.

It definitely makes filling summer weeks more complicated and challenging.

We are fortunate this year because his middle school is allowing him to attend their summer school and camp.

Not only is it a great way for him to transition from school that he’s been attending for nine years, to high school in August, but it’s affordable, and comfortable for him.

He’s happy to be, “helping”, to wrangle the younger kids.

The guy who runs the camp even had a, “Volunteer”, t-shirt made for Cole to wear.

He feels like a needed member of the community.

It’s a relief and it promises to be a positive, fun summer for him.

Of course, I’m already fretting over what happens next summer when this won’t be an option!

One step at a time…

I Want To Be More Like My Husband (Father’s Day Tribute)

Fast forwarding past the wedding we decided to try for a baby, here is where our personalities really started to show, I was very quick to start stressing over another month passing but still not pregnant and Tim kept reassuring me that I needed to pretend we weren’t trying and just enjoy life.

It worked! We were having a baby boy!

It was at 28 weeks that things started to get rocky and we found out that Zachariah’s brain wasn’t developing the way it should be.

This was an absolute scare to us both.

I barely remember being in the meeting where we were told it was just so surreal!

I froze. I wept. I didn’t understand!

On the other hand Tim stepped up and asked questions, he cuddled me and told me that nothing the doctors had said would affect his love for our little boy, whether we had one day with him or many more it didn’t change the fact that Zachariah was our amazing little boy.

He was so calm and so strong. He held us all together.

Following this came a lot more meetings, scans and even an MRI, and throughout them all Tim would hold me and comfort me until our son was born 3 weeks early in 2014.

Now Zachariah has been in our lives for two years, and how amazing this time has been!

He’s such an incredible little boy full of love and giggles.

Tim is his best friend, they have a connection so strong that even I (who he spends most of his time with) can’t compete with.

This bond is so special.

Tim takes advantage of every minute he spends with Zachariah, he is enthusiastic, he’s fun, he’s positive.

Whenever I begin to question things, doubt myself as a Mother or worry about the future, Tim is there to lift my spirits and find the good in the situation.

Nothing seems too big or scary for Tim, he just embraces what we have and loves his son unconditionally.

We’ve recently found out that Zachariah’s condition is life shortening due to the way his brain has developed. Where we have a bumpy cauliflower-like brain, Zachariah has a smooth brain.

This has led to Zachariah having epilepsy, difficulties feeding and possible respiratory issues.

This information absolutely broke me!

I started to grieve that my little boy may not reach high school or become a teenager.

My eyes were red raw from the constant crying, the thoughts that went through my mind were shocking.

I started to lose enthusiasm to do his therapy and just wrap him in bubble wrap!

My husband on the other hand reminded me that Zachariah is still very much here in the present and that is what we should be focusing on.

We should cherish every moment and enjoy him! He said, and I quote ‘He is my son, and I love him, this doesn’t change that’.

No crying, No self pity, No grieving. Just pure and unconditional love for his Boy!

I’m not saying that I’m not going to shed another tear over my son, I most likely will, but I have made the decision to be more like my husband and try to enjoy every single moment we have with Zachariah, and not miss precious moments in grief or wondering what the future holds.

I love my Husband and everything he teaches me.

Rochelle,
Mummy to Zachariah.xx

To My Special Needs Husband On Father’s Day

Only one of our children will wish you, “Happy Father’s Day!” and I know that is hard.

One of our children has yet to even say, ‘daddy’, at seven years old and that must break your heart.

I cannot take that pain away. I won’t even try.

But I need you to know you are a wonderful father this Father’s Day.

I need you. I love you. Our children need you. Our children love you.

We appreciate that you gave up your career to become full time carer as the children’s needs increased year upon year.

We appreciate that you have sacrificed time out with your friends and family events to come to hospital appointments and meetings for our children.

We appreciate that you push a wheelchair with our son in everywhere we go and never ever complain despite the fact he gets heavier everyday.

We appreciate every time you get up through the night to check on a sick child or to calm our anxious daughter.

We appreciate the hours you spend on the internet checking out the diagnosis and trying to understand what is happening when we are constantly faced with confusion.

We appreciate you coming to constant hospital appointments when sometimes I become emotional and difficult to soothe and the children are bored and restless.

We appreciate you changing batteries on a baby toy for your son even when the noise it makes gets on your nerves so much.

We appreciate you being there for both children when they can’t tell you what is wrong and you find that so hard.

We appreciate you being such a stable and strong presence in our lives when the world is so full of change.

I am sorry our children don’t understand Father’s Day and you will never be woken on Sunday by their loving arms around you and kisses on your cheek.

I am sorry they will not be running out to the shops to choose you a gift and celebrate you.

It does not mean they don’t love you.

When they kick you and bite you I need you to remember it is because they know they can let their upset and frustrations be known to you.

When they push you away remember they just need space and they are not rejecting you.

They love you. They just struggle to show it.

You don’t have it easy as a special needs father.

I know there are times you wish you could kick a ball with your son and put your daughter on your shoulders for a walk through the woods. I know you worry about the future.

I want you to know today more than any other day though that you ARE loved and appreciated.

Our children cannot say it or even sign it but on behalf of them both Happy Father’s Day to you and to all the other special needs fathers.

A Letter to My Daddy – To the World I’m Special Needs But to You, I’m Just Special

Dear Daddy,

You knew from the moment I was born that I was different, but instead of letting it freak you out, you embraced it and you nurtured me.

You thought I was nothing less than perfect even from the first day when all the doctors were looking at my imperfections.

Every morning when I wake up it’s you that comes to get me.

You cuddle me in close with your big, strong arms and scuff my face with your scratchy beard.

I know you are desperately tired and need to get ready for work, but you play wrestling with me on the bed and Daddy, I know that you let me win.

You are my best playmate, and my best friend.

I know you are waiting patiently until the day that I can kick a football, and ride a skateboard.

I know it breaks your heart that I might never be able to do these things, even though you won’t admit it.

But thank you for loving me just the way I am.

You tell me you love me and call me, ‘mate’.

I love you too and you are the best mate any little boy could ask for.

You say I’m, ‘epic’, to all your friends and you show me off to everyone.

You aren’t embarrassed if I shout for attention or if I throw cake.

Thank you Daddy, for making Mummy happy, because when Mummy is happy then I am happy.

When you cuddle and kiss her, her face lights up, even when she shrugs you away to get on with the cooking.

Thank you for coming to get me when I wake up at 5:30am on Saturday mornings and letting Mum stay in bed.

She gets so worn down during the week even though she doesn’t do as much work as you, I am quite a big job and she works hard!

I am so glad that you get to the gym and football practice, even though your heart is telling you to come straight home from work.

I love that you have big strong arms for lifting me and I love hearing about all the goals that you score.

Thank you for all the presents you buy me even though some of them are really for you, like all the different models of planes and cars.

One day I will learn all their names and make you very proud.

Thank you for taking me to the park even though you have to carry me up the slide and catch me at the bottom.

And you have to hold onto me on the see-saw and roundabout even when all the other kids are doing it themselves.

And you don’t mind the other kids pointing and the mummies staring.

Thank you for my huge collection of vehicles that I can drive around the house and garden, and for understanding how much better it makes my life to have a bit of independent mobility.

I love it when you chase me and it makes me go faster!

Thank you for carrying my tractor, even though it’s the heaviest of them all, down to the park so that I can ride outdoors.

Sorry about all the times I go the opposite direction to where you’re heading, I just get so excited with the steering wheel!

Thank you for letting Mummy go out with her friends every now and then and for going easy on her the next day when her head hurts a bit.

Sometimes Mum needs to put all our troubles to one side and drink mummy juice with her friends.

Thank you for telling Mummy she’s beautiful even though she has a few more frown lines since I came along.

I know how hard life is for her and sometimes she gets a bit overwhelmed and emotional.

You are the strong one and you always make everything OK.

Thank you for using up your last scraps of energy at the end of the day rubbing Mummy’s shoulders and listening to her moan.

For reassuring her that the bad days aren’t so bad, and reminding her of all the great stuff to be excited about.

Thank you for being there for her while I am such a burden.

The best part of the day for me is night-time when we settle down on the bed and you read me a story. I love your silly voices and our snuggles.

Mum gives great kisses and cuddles but there’s nothing quite like my Daddy’s snuggles to send me into a cosy happy sleep.

I know you have to work lots, and although I don’t really understand what, ‘work’, is, I know it is important and you are doing it for us.

I know you’d rather be at home and that every extra minute you’re not with us tugs on your heart.

I understand that decisions that would once have been easy, are now so very difficult, because you are constantly bearing the guilt of the sacrifices you have to make.

I know you will always do the right thing, and thank you for worrying about me and taking me into account every step of the way.

I know you worry about the future and who will look after me.

I know you worry about bringing another child into our family and how this might impact on me.

Daddy, don’t worry, I will be fine.

Our weekends are precious and you go to so much effort to cram in lots of fun stuff for us to do.

And although I love family outings, I know how hard it is for you and Mum because I can’t walk and can’t adapt to the outside world like the other kids.

Thank you for trying.

Thank you for letting your excitement override your anxiety about the possible outcomes that each day out may involve.

Thank you for the numerous two minute trips carrying me up to the top of the soft play and the two second journeys back down my favourite bumpy slide, which you repeat over and over again without hesitation, because you just love the sound of my laughter.

Thank you for helping me climb into the ball pit and back out 30 seconds later when it is freaking me out.

Thank you for breaking the rules and sneaking into the, ‘Kids Only’, zone because I can’t do it on my own like the others.

I know you pretend not to notice the looks and comments from people around us, but it’s ok to get protective.

And Dad, about our weekends, it’s OK if we don’t go out! In fact, my favourite thing is to go and play with man stuff in the shed with you.

I like fixing things and breaking things and spinning the wheels on things.

It’s not about what we do and where we go, it’s all about being with you and spending time together.

No one else quite gets me like you do.

Thank you for sometimes, ‘forgetting’, about the physio, the back brace and the signing practice, because sometimes, the best therapy is just playing with my Daddy.

Even though I spend most of my time with Mummy, you are still half of my world.

Thank you for understanding me like no one else, and for accepting me even though I am like no one else.

I love you.

Jenson Jack (2 ¾)

The Beauty of Inclusion

My daughter is five years old and she attends school in a PMD (Profoundly Mentally Disabled) classroom environment.

I have blogged before of how the label of PMD was originally very difficult for me to accept. If I had to label her, I would label her as beautiful, happy, determined and inspiring.

The name of her classroom is really quite deceiving. When we walk through the door, we are greeted by the wondrous sight of interactive learning, friendship and joyfulness.

There is a plentiful array of special equipment to help her and her equally amazing classmates to reach goals. It’s obvious that goals and achievement are very important there.

Music fills the room and creates a light-hearted and cheerful scene. Her loving teachers give the atmosphere a warm and secure feel.

While I love this enriched classroom, and see it as her perfect safe haven, I also love the opportunity that she has each day to spend time with a typical kindergarten class.

I have watched (with my heart bursting) kindergarten students competing to be my daughter’s “buddy.”

They help her participate in Music, Art, Physical Education and other activities that are part of the typical school day experience.

She is nonverbal, but it is truly magical to see the interaction that takes place between her and these students.

It doesn’t matter to them that she is in a wheelchair.

They want to push her in her chair and help her roll a ball…. They laugh with her…They tell her they love her sparkly shoes….They encourage her.

They are imparting skills and providing immeasurable teachable moments for her. All the while, she’s unknowingly teaching them valuable lessons about life, friendship and strength.

It’s clear to see that the interchange between them is mutually rewarding.

When I was in high school, I had the honor of working with children with special needs. The experience has remained with me throughout my life and the lessons I learned from them had a tremendous impact on my heart.

By allowing typical children to spend time with children with special needs, I believe that kindness and compassion are strongly ingrained into them, and it builds upon their character.

Children aren’t judgmental at that young age. I firmly believe that opportunities like this promote sound character traits that carry on with them into adulthood.

Being embraced and included by these kindergarteners, my daughter is not treated as inferior.

She is treated as a peer and as a friend.

The great beauty of inclusion is that remarkable abilities are realized and treasured relationships are formed.

I am very grateful to her wonderful teachers and to the caring Kindergarten teacher who promote this idea.

They may not realize it, but their actions are changing the world little by little, and making it a better place.

Using The Playpak In A School Setting

Jesse had the chance to trial the Playpak in the school setting, including in his general education classroom and in the therapy areas.

Jesse is working hard on improving his range of motion, strength, posture, balance, and coordination to assist him in successfully participating in school activities with peers and in accessing school curriculum to the best of his ability.

Jesse is a great friend to all students at his school and has a consistent and contagious smile!

Using the Playpak in the School Setting

Jesse’s goals in Occupational Therapy include working on his head/trunk control and strength and increasing his upper body coordination to increase his ability to safely access his school environment and participate in school tasks with his peers.

Jesse uses several different types of equipment at school including supportive seating, activity chairs, a gait trainer, and his new powered wheelchair!

Jesse is very excited to use the Playpak, as it will provide him with a less restrictive supported seating system at floor level for carpet time (floor sitting) social learning activities!

As an Occupational Therapist in the school setting, I believe it is important to educate students on the reasoning for exercises and activities completed in therapy sessions.

I explain how the tasks work on increasing skills that will carry over to other parts of the school day.

Jesse enjoyed watching videos on the Firefly website to learn about his new equipment and all the other children who are already benefiting from it!

Platform Swing – Vestibular Input

The Platform Swing was used in Occupational Therapy sessions to provide Jesse with vestibular input and repetitive practice controlling core muscles.

Vestibular input is important for appropriate development of coordinating and planning motor tasks (such as catching a ball with two hands, or reaching across the centre of his body and even coordinating movements of the mouth).

The vestibular system has to do with balance and movement and is centered in the inner ear.

When the head is moved, the fluid in these organs move and shift and provide us with information about the position of our heads and bodies in space (spatial awareness).

This allows us to maintain our balance and to experience confidence that we can maintain a position without falling.

The vestibular system also works alongside all of our other sensory systems, helping us use our eyes effectively and process sounds in our environment.

Jesse was positioned on the platform swing, with it on the ground first. This was to ensure that he had the proper support without adding the challenge of an unstable base surface.

Jesse was able to feel safe and supported on this swing before it was raised off the ground to decrease gravitation insecurity. Jesse practiced holding on to the swing with both hands after passive range of motion exercises were performed.

Jesse has most difficulty accessing items with his left hand, so this was a great bi-lateral coordination task!

Once the platform swing was raised, Jesse was excited to get swinging, but first needed to get used to the feeling of an unstable surface without adult support.

Jesse was given the soft Playpak pillow to hold on to and listened to his favorite song to get him ready to move!

After listening to the music, Jesse was assisted in returning to the position of holding onto the swing with two hands.

Jesse smiled throughout the swinging activity. After a few minutes moving on the swing, Jesse was able to hold onto the swing with his non -preferred hand ONLY!

By the end of the swinging session, Jesse was scanning the room and pointing at poster items, which I (OT) asked him to find.

Floor Sitting During Classroom Carpet Time

Jesse was excited to use the Playpak in both the therapy room and in his general classroom setting.

When participating in carpet time (floor sitting), Jesse’s aide was able to sit in front of him while reading his a book rather than sitting behind him to physically support him with her own body.

The Playpak allowed Jesse to be more independent when sitting at floor level in his general education classroom.

His teacher said she felt like Jesse was more included in classroom carpet time activities by independently sitting at the same height as his peers rather than in his powered wheelchair.

The Playpak is produced in fun and inviting colors and other students wanted to sit next to Jesse and see his new gear.

It made Jesse feel special! Jesse demonstrated an increased tolerance of floor sitting and increased time working on his trunk and head control skills.

Using the Playpak Jesse had increased access to items on the floor and items placed to the front and side of him, which was more difficult for him in his other supported seating options as they either raised his height from the floor or required physical support from an adult.

Sarah Brulport (OTR/L), School Based Occupational Therapist

I want to thank Firefly for allowing me to trial the Playpak in the school setting with my student.

The Playpak was very easy to pack and unpack. As an Occupational Therapist who works in multiple school buildings and districts with a wide range of ages and abilities, the Playpak’s versatility was much appreciated.

It was easy to adjust all the supports for the student’s different needs and positions.

The Playpak was easy to take on the go, to the classrooms, therapy rooms, specials rooms, etc.

I love that it is durable and machine washable! The Playpak allowed me to try new therapeutic activities with students.

It allowed them to be more independently supported and gave me free hand to present other tasks to the front or side of the student.

The product was admired by teachers, therapists, and school staff in the building.

It opened up our minds to new and creative positions and tasks for students to try.

This product is a winner!

How To Be A Great Friend To A Special Needs Parent

We are often emotionally drained and physically exhausted.

We don’t have much time or energy to put into nurturing friendships.

But that doesn’t mean we don’t want to have friends!

On the contrary…special needs parents want and desperately need friends.

But it takes a special kind of person to be the type of friend that a special needs parent really needs.

Do you have what it takes to be the friend of a special needs parent?

Because, let me be perfectly honest here, most special needs parents are, well, quite needy and chances are they always will be!

So what exactly do special needs parents want and need from their friends?

I certainly can’t speak for every special needs parent, but I can tell you eleven things that I need from a friend!

1. I need friends who are willing to understand and accept that my child will always be my number one priority.

She will always take up most of my time and energy. So please don’t get your feelings hurt if I can’t meet you for lunch or attend your dinner party.

2. I need friends who understand and accept that my child’s disabilities are not curable.

Our situation is not going to change much over the years. So please don’t get your hopes up too high that someday I may be able to meet you for lunch or actually ever make it to one of your dinner parties.

3. But I also need friends to keep inviting me out to lunch and to their dinner parties.

Despite the fact that I repeatedly turn them down. I just might actually be able to make it once in a while!

4. I need friends who are willing to understand and accept that most of the time, if they want to get together with me, it may have to be at my house, on my terms, or I might need to bring my child along on an outing.

5. I need friends who will acknowledge the seriousness and gravity of my child’s disabilities and chronic illness.

Please don’t roll your eyes behind my back or secretly think I am exaggerating or making up my child’s condition.

6. I need friends who will encourage, support, and pray for me and my child in my efforts to provide the happiest and healthiest life for her.

7. I need friends who will respect the decisions I make about and for my child and not assume they know what’s best.

Please don’t try to convince me to try this, that, and the other miracle cure you’ve recently read about, because chances are that I already have!

8. I need friends who will just be there for me when I’ve had a hard day and need a shoulder to cry on.

Please don’t try to offer solutions to my problems or spit out spiritual platitudes. I just need someone to listen!

9. I need friends who see when I’m overwhelmed and offer to help with practical matters.

Do you see the dishes piling up in my sink? Don’t ask me if I want you to wash them.. just start washing them!

10. While I certainly don’t expect my friends to do all my housework for me, I do expect that if you offer to help, that you will do it.

11. And finally, I need friends who like my child and treat her with the kindness, dignity and respect that she so rightly deserves!

“A person who truly loves you will never let you go no matter how hard the situation.” – kushandwisdom.tumblr

“I get by with a little help from my friends.”- The Beatles

“One of the most beautiful qualities about a true friendship is to understand and be understood.”- Lucius Annaeus Seneca