Special Needs Parents: I Am So Proud

That, or we grind to a halt burnt out.

YouTube goes on, we crash out and I dwell and wallow over how hard things can be, and how many challenges lay ahead.

The stresses and strains start to show and each day feels like Groundhog Day.

Well, no. I am writing this to emphasise that in spite of how exhausting it all can be that I am so happy.

Lately I have been absolutely bursting with love for Amy. She makes me so proud every day.

I had a moment of introspection yesterday where I reflected on a few years ago when Amy was a baby.

I was so immersed in the trauma of her birth and getting to grips with tube feeds etc. that I feel like I missed out a lot on the good parts.

Too much time was spent trying to process the situation. I look back at baby photos and they’re a blurred distorted memory.

They say life is too short for regrets, and to treasure the moment… but I do wish my brain had allowed me to enjoy how tiny she was and what a truly special time it was.

I feel like now I am making up for this. The old challenges are replaced by new ones, but for the first time I am starting to feel a lot more optimistic about our future.

Days out can be hard work, Amy can become quite irritable and distressed. But I have recently noticed a lot of huge improvements.

For example, in the morning when I prepare her feed she will watch me patiently whilst playing with a toy.

A year ago I would be frantically trying to prepare the feed as quickly as possible and get myself all flustered because she would cry and cry wanting one on one full attention. This is a huge achievement.

She is more interested in the world around her and has learned that sometimes we have to wait. Her attention span has increased and she is starting to show that she understands some of the things I say.

My favourite thing is her new habit of doing what I call her royal wave as we walk down the hospital corridors.

She pops one arm out and waves to passers-by and I ask her “wow, are you waving to everyone? Clever girl” and she will giggle.

I will say to her “Amy… do you want to watch some videos?” and she will cheer excitedly knowing what’s coming. What a star.

Tactile play has never interested Amy a lot. She craves high level stimulation such as upbeat constant music, light up noisy electronic toys, and me singing specific songs over and over.

It can be very head ache inducing and I have spent many days desperate for just a moment’s silence. Well recently she has taken more of an interest in feelings different textures.

It fills me with so much excitement and hope! It is so amazing to see her bring her hands together and interact with something that doesn’t make noises.

She recently cuddled a polar bear teddy in the garden centre. Her face lit up with joy and she instantly embraced the teddy, pulling it in closer to her. I could have cried.

It’s amazing how something we take for granted in any other situation can actually become a HUGE development for our children. I learned very early on to celebrate EVERY little thing Amy does.

From the moment in NICU when we saw her finger move for the first time, to the time she learned to hit a big mac switch by herself – all of these things require a lot of extra energy and thought than it would for someone able bodied. She’s amazing.

Do you ever do that thing where your child is sleeping and you watch over them and think to yourself, “Wow. How was I capable of making something so perfect?”

And you admire their beautiful angelic face at rest, breathing… regulating their temperature, tolerating medicines and food… doing just so much; so many things that at one point weren’t guaranteed.

Every night when I go in to do her last meds for the day I smile to myself – all of the chaos from that day is gone.

Tomorrow is a new day – probably also of chaos – but we’ll get to that point where we can all just relax and reflect.

I was in a coffee shop at the weekend and Amy was having a few sensory issues. I was trying to settle her with toys, songs and iPad and she did me proud… in the past she would have got louder and louder until we had to just leave… but she coped.

We managed to stay there relatively care free.

The waitress said. “Would the little one like anything to eat?”

I even impressed myself with my answer.

I said, “No thank you. She’s tube fed… she can play, watch videos AND eat at the same time. She’s a lot more advanced and efficient than us”.

By wording it differently the waitress was amused and impressed and we had a candid, happy conversation about Amy as opposed to the usual “will she have to have the tube forever” and so on.

I love the days where I can put a positive spin on it.

So often my mood hinges on Amy’s mood. If she’s not slept… I haven’t. If she is upset… I am upset. But when she’s happy… I am on top of the world. Her smile really is infectious.

I’ve seen the most miserable looking stranger go from dreary and depressed, to full smile and laughing when they catch a glimpse of Amy’s intense joy and laughter.

I smile to the stranger, pleased that we have added a positive snippet to their day. I push Amy’s wheelchair a long and I feel smug… this girl is my daughter, look how amazing she is.

I feel so cheesy when I say it… but a sleeping child… and a laughing child… really is the best thing in the world.

Even better than that… is seeing a child that has been dealt a tough hand… finding a way to communicate, interact, and enjoy life.

Whatever my purpose is on this planet… I know that with an Amy by my side I can achieve it. I am truly the luckiest girl in the world.

So, wherever you are in your journey – no matter how rough it may currently be – it is so important to find a moment to take stock of what you’ve got.

Think of the things you are grateful for and hang on to that tight, it will get you through.

Special Needs Campaigns: Why I Am Losing the Will to Fight for, “Changing Places”, Toilets

I’ve had some small successes but the majority of my requests to businesses to install these facilities are met with a firm no.

Recently I have been considering legal action and have been discussing what this would entail with a solicitor who specialises in equality.

But, in all honesty, lately I am starting to wonder if it is all worth the hassle and stress that campaigning is putting on me and my family.

Is the stress of campaigning harder than the stress of leaving a venue and returning home to allow my son to use the toilet?

In the summer holidays I had a, “well-documented”, incident in my local Tesco store.

My son needed the toilet and was screaming the place down, I’d resigned myself to the fact that to allow him to go I would have to lay him on the toilet floor.

Something I have refused to do for many years, instead choosing to leave the venue and return home.  But this time I felt it was my only option as I needed to finish my shopping, the cupboards were bare.

But the toilet floor wasn’t an option that day as it was soaking wet, whether that was water or urine I do not know, and I was not risking putting my boy on it.

So, I left.  But on the way, I stopped at customer services to tell them, yet again, how important it was to put a changing places toilet in the store.

My conversation didn’t go to plan and instead of explaining the issue, I broke down and cried (a lot) on the manager, while William continued to scream and cry too.

This incident led to various emails to and from Tescos both at HQ and local level.

Eventually, I was told that as there were 3 changing places toilets within a 5-mile radius (the closest being 2.3 miles away) they had been advised by the changing places consortium that they should select stores which did not have changing places toilets locally available and that this particular store therefore did not necessarily need one.

Imagine that, the campaign leaders telling a £multi-million business that they didn’t need to provide a changing places toilet because someone else had provided one over 2 miles away and that would be sufficient.

I did not believe it and immediately presumed Tesco were making excuses.

After all, the ideal solution would be for there to be a changing places toilet in EVERY large building which provides toilets to other people so that the most vulnerable NEVER have to leave a venue simply to use a toilet.

However, I’d heard a similar excuse from a large cinema chain.

They told me that they did not feel it necessary to provide a changing places toilet as there was one approx. 1.7miles away and that they had been advised by the changing places consortium that this was sufficient.

I felt this was ridiculous and appeared on Channel 4 News saying proving how impractical it would be to use their suggested toilet if we were watching a movie.

I could have been led to believe it was just coincidence that 2 businesses were using this excuse until today when it came to light that another campaigner had been told the same thing by a different national chain, again stating this was advice they were given by the changing places consortium.

So, this makes me question why?

Why are they telling businesses that changing places toilets are not their responsibility?

Why aren’t they insisting to these businesses that it is not acceptable to expect a disabled person to leave their building, let alone travel a mile, to use a toilet?

Why aren’t they educating businesses about their responsibilities under the Equality Act 2010?  The duty to make reasonable adjustments.

And why are they making campaigners, like me, look stupid?

Mums and dads, brothers, sisters, carers who all work hard, in an unpaid role, during the little spare time we have because we need these facilities so desperately.

Why are we are being made to look stupid by requesting changes that we know are so essential, only for the supposed leaders of this campaign to tell the very businesses we are speaking with that in fact we don’t need these facilities as we can use one somewhere else?

Why am I wasting my time?  Why am I fighting so hard to raise awareness and make changes when others are essentially ruining any chances of that happening?

I have spent a long time wondering why there aren’t more families campaigning for changing places.

Why, even after 10 years, there are so few facilities and why the families before me weren’t still campaigning.  I now see why.

And that is why I have lost the will to campaign for changing places toilets.  Not because they aren’t needed, desperately by so many people.  Not because I cannot be bothered or don’t have time anymore.

No, I have lost the will to fight because a consortium of so called ‘experts’ are giving £multi-million businesses another excuse to not provide changing places toilets for my disabled son.

Special Needs Parents: Regrets

I have regrets.

I have personal regrets, which I am not going to bore you with, instead I am going to talk about a regret which sometimes catches me off guard.

In 2008, Ethan was diagnosed with, “Hunter Syndrome”.

In 2009, Ethan was granted a wish by the wonderful Make-A-Wish. (MAW)

He was nominated by our local Tesco.

We struggled.

We struggled with, firstly, the thought that our little boy met the criteria for MAW.

That’s a huge reality to try to accept; despite doctors and specialists telling us what Hunter Syndrome had planned, we, at the time, couldn’t see it becoming our reality.

We had a little boy who played, joked around, spoke, ran and was very much a typical seven year old with a few behavioral issues  and a hearing impairment .

Back then, it was very hard to acknowledge what Hunter Syndrome would do to our whirlwind son.

We struggled, secondly, with what to do with a once-in-a-lifetime wish.

Ethan told us he wanted to see Mickey Mouse and all his friends from Disney.

We showed him pictures of Disneyland.

‘There. Disneyland, Woo- hoo!!’ he ran around the house as the, ‘fairy’, from MAW laughed and handed us forms.

‘Disneyland it is. Florida, yes?’ She presumed.

This is where the regret comes in.

Ethan’s behaviour was always difficult. His sensory issues were always hard to manage and his excitement over things often lead to extreme behaviour; he was reckless, a ball of energy, no regard for his safety and he never sat still.

He was hard work.

Hard to manage.

Hard to keep calm.

Hard to anticipate his reactions.

Hard to keep focused.

We exchanged looks.

Could we manage Ethan on a plane from Ireland to America?

Could Ethan handle it?

We decided there and then France was more suitable.

And that’s what we, his parents, both regret.

We focused on the wrong things.

We focused on how hard it would have been to fly with Ethan for that length of time. We focused on the busyness of the airport. We focused on possible flight delays. We focused on Ethan’s behaviour.

What we didn’t focus on was; that this could have been one of the last times Ethan could fly anywhere without medications, wheelchair, extra supports and papers from doctors telling the airline what to do in an emergency.

We didn’t realise; despite being told, that Ethan’s syndrome could only ever deteriorate.

We went to Euro Disneyland and had an amazing trip.

It was indeed a dream come true, not only for Ethan, but for us too.

Hindsight is always a great thing.

If we knew, that as the years went by, Ethan would slowly forget his love for Disney, we would have gone to America despite the potential stress that getting there and back may have caused Ethan (and us!)

Back then, it was hard to comprehend that our child, who could name every single Disney character would eventually forget them; he would, in time forget the love he had for them too.

And yes, we regret that we didn’t bite the bullet and go the whole way to America.

What I’ve learned since?

Ethan’s behaviour no longer dictates where we go or where we don’t go.

What dictates it for us now, is accessibility.

We go on day trips, often.

We laugh.

We encourage ‘wildness’ and ‘mischief ‘in Ethan when he gets overly excited these days.

We are going to a Halloween parade for the first time ever, in our local city of Galway.

We no longer worry about the behaviours of Ethan in public.

We only worry about his sensory needs, accessibility and accessible toilets (Space to change to see what I mean by accessible)

And you know what? That’s enough to worry about.

I’m tired of worrying about Ethan’s behaviour and how others react to him.

I regret that we didn’t think like this back in 2009.

To those of you who are anxious about traveling via a plane with your kiddies with extra needs; take it from me, it can be done, just research and contact the airline to get the assistance you require.

Don’t let behaviours or more importantly, other people’s perception of you and your kids, stop you from getting on a plane.

Regrets, we all have a few

10 Special Needs Books to Curl Up to on a Cold Winter’s Day

Granted, our days are extraordinarily challenging, but sometimes reading a book that makes you reflect or think about a different perspective about special needs parenting is just the soul food you need and have been craving.

Here are ten great special needs books that you can curl up to on a cold winter’s day:

The Life we never expected:  Hopeful Reflections on the Challenges of Parenting Children with Special Needs

By Andrew Wilson and Rachel Wilson

A book written from the perspective of parents who have two children who have special needs.  A book that leans to a spiritual awakening and with religious beliefs a guide towards acceptance and grace for the things you cannot change.

The book offers wisdom in parenting two children living with Autism, the unwavering hope, the realistic and raw emotions and challenges, and the faith that tomorrow will be better and stronger.

The book offers as a guide as to what churches in your community should do, while being open and candid about the everyday frustrations and feelings that come along with parenting children who have special needs.

This book is very much rooted in biblical tone, yet candidly offers a genuine and heartfelt experience of both the joy and sadness that is associated with having a child with special needs.

It is heart-warming, emotional and relatable.

The Pocket Occupational Therapist for Families of Children with Special Needs by Cara Koscinski

 A great book for parents who are new to therapies for their child with special needs who are looking to learn more about occupational therapy goals and tasks.

Written from the perspective of another parent who has a child with special needs who is also an occupational therapist by profession. The book is a wonderful resource for learning therapist terminology.

The book aims to assist parents with various questions as to how to find a good OT therapist, what home goals should look like, and resources that are available to better assist your child in a therapeutic setting.

The book is also a fantastic reference guide even for the more OT experienced parent.

You Will Dream New Dreams:  Inspiring Stories by Parents of Children with Disabilities by Stanley D. Klein, Ph.D.

This book address some of the more taboo or harder side to decision making when it comes to children with disabilities.

The book contains chapters on a parent’s decision to place their child in a group home, and a parent’s struggle to acceptance and coming to terms with the severe nature of their child’s disability.

A great read for a parent that is struggling with feeling overwhelmed, alone or on emotional overload as a result of their child’s diagnosis and ongoing needs.

It is a book that lets you know that you are not the only parent that is facing or has faced some difficult decisions on the special needs journey.

The Elephant in the Playroom by Denise Brodey

A book of heartfelt stories shared by other parents who have children with special needs.

It gives a raw and honest account of both the joys and the challenges with special needs parenting.  A book that is a bit more light-hearted in its approach.

The stories will leave you feeling like there is hope for the hand you were dealt, and finding commonality with other parents who going through the exact same experiences that you are.

Views from Our Shoes by Donald Joseph Meyer and Cary Pillo

A great book that shares the stories of 45 brothers and sisters to siblings who have special needs.

The book contains a series of essays from an age group of four years old to eighteen years old and their perspective and experiences having a sibling with special needs.

The essays are candid and honest about their feelings from the very good to the very bad – but with a universal theme of love, compassion and ultimate understanding for their sibling with special needs.

If you are struggling with a sibling dynamic this would be an interesting read.

Schuyler’s Monster by Robert Rummel-Hudson

This book is written from a father’s perspective about the challenges of raising a non-verbal daughter.

There are not many books that explore a father&#3#39;s perspective in special needs parenting, which I think offers a unique and important aspect to this book.

A father’s love, devotion, and feelings no less important and it is refreshing to have a father discuss feelings related to a child with significant disabilities and special needs.

It touches upon a father’s self-doubt about his potential shortcomings in relation to parenting a child that had no voice of her own and his feelings of being inadequate to fulfil her needs.

Uncommon Beauty: Crisis Parenting from Day One by Margaret Meader

A book written by a mother to a child who has special needs, the book offers tips and guidance on how to navigate the system, be the best and strongest advocate for your child that you can possibly be, dealing with the harsh realities of financial hardships, and juggling endless hospital and therapy appointments.

It is a book that empowers parents to be the very best that they can be given the multitude of challenges that they are facing.

A great “go-get’em” book that will serve as inspiration and fuel to keep marching forward.

Handle With Care by Jodi Picoult

A book about having a child with the diagnosis of osteogenesis imperfecta, (or more commonly known as brittle bone disease, OI).

Although based as fiction, the author does a relatively decent job describing some of the heart wrenching thoughts and emotions that are associated with a child who has a severe and even in some cases a life-limiting condition.

It touches on the theme of what constitutes a life worth living, the value of a life and what you’ll do as a parent to move heaven and earth to provide the best life possible.

They Say I’m Special:  100 Tips for Raising a Happy and Resilient Child with Special Needs by Frances Vidakovic

This book offers perspective and tips on raising a child with special needs who is resilient along with special needs parenting coping strategies.

The book aims to be a self-help guide on assisting your child with the most independence and best future you can offer them with their own special needs.

The book is written from the perspective of a mother who has a child with special needs and offers the reader something they can relate to.

Refresh:  Spiritual Nourishment for Parents of Children with Special Needs by Kimberly M. Drew and Jocelyn Green

This book is packed with comfort, hope and faith.  It is a devotional book that aims to encourage parents who have children with special needs.  To let them know they are not alone on the journey.

The book offers spiritual truths, scriptures, stories and testimonies from other parents.

The book also explores the theme of a deeper understanding of all the personal lessons that come as a result of having a child with special needs.

Curl up next to a warm fire with a good read and tell us all about it!