A year of memories made

Looking back over the year its always nice to focus on all the positive things the year has brought us.

We have ticked off some lovely experiences on Ethans bucket list.

Feeding a giraffe at Noahs ark zoo farm and being a zoo keeper for the day. Ethan loved nearly all the animals. Just not the snake!

So funny to see him telling us he didn’t like it. Great communication from him.

He also enjoyed a visit from his favourite Disney princess Elsa. He has loved Elsa since she came into the cinemas. His face was an absolute picture when she was singing to him, he even held her hand.

We managed a successful night away as a family. Ethan actually was the best sleeper and wasn’t happy when his sisters woke him up for a change.

We also enjoyed a break away together as a family of 5 at the hospice. We had fun just being away from home for 5 days, experiencing the zoo keeper experience together and meeting Elsa.

Seizures have remained around but we have had a few periods this year which have been slightly quieter which is a slight improvement.

His VNS vamp ups have been consistent in helping to keep him needing less midazolam. Only had a handful of times which have needed a second dose of midazolam this year.

We enjoyed taking our Cbeebies mad son to Cbeebies land. Our tickets were gifted from Merlins wand and it allowed us to be able to have fun riding in Postman Pats van, riding down the Night Garden River and flying around with the Go Jetters.

Ethan loved being able to go on the rides and experiencing his first proper try at rides. A day we will never forget where he smiled and laughed all day.

We have had a lot of lovely days out together at National Trust properties. Taking part in the Wallace and gromit trail and seeing the model from the film.

Ethan moved to a new class in September and has been a lot more settled at school.

He has been enjoying two swims a week which really helps his muscles.

Lots of time on the mechanical horse, rebound therapy and choice making. His school play was lovely as always.

We were able to purchase the eye gaze equipment for Ethan thanks mostly to Ethan’s auntie for walking the 3 Peaks for him.

This has been so fun to watch how clever he is with it and he also laughs at all of us when we can’t do it.

This will provide and exciting opportunity for Ethan going forward to allow him to communicate more successfully with us.

As always Ethan has worked hard with his physiotherapy. He has been working on bringing his arms to the midline and successfully eye pointing wants.

This is going well. Ethan got a new standing frame which will be great for his legs and overall strength. We are hoping to get him back in his walking frame next year.

Another year of amazing strength and determination from Ethan.

A year of lots of memory making and spending time enjoying life.

Let’s focus on the positives and not the negatives.

At last our Disney Princess

Our daughter has a rare chromosome deletion 2q23.1 Micro-deletion Syndrome causing autism, epilepsy and intellectual disability.

It is always a little challenging to get the right gifts for Isla at Christmas and this year is proved no different.

This is partly because she knows exactly what she likes.

She also knows what she doesn’t and will waste no time telling us or anyone else for that matter.

Fixed interests, one of the hallmarks of autism, are to blame for us only being allowed to buy the same thing for months maybe years at a time. Thomas the Tank Engine and Paw Patrol have been Isla’s main toy focus for as long as I can remember.

Recently though, there has been some new developments.

We have managed to switch from buying toys to buying books! However, having completed the ENTIRE series of Captain Underpants, The Treehouse Books and Dogman we have run out of inspiration.

Isla has also shown a recent interest in Disney Princesses. Even more exciting is that she wants to dress up pretty like a princess!

After all these years of not caring about what she wears (as long as clothes are functional and comfortable), I am quite excited about this! Why? It shows she is becoming aware of herself and I am taking that as a jump in development.

I am ready to embrace the pink, blue or yellow and taffeta…depending on what Disney Princess you choose. She doesn’t seem to have a preference.

But do you think I can find a Disney Princess dress in a size 12??!!!

It seems that the maximum age for anything Disney is size 8. Of course I know this as it wasn’t long ago Isla’s sisters were of a similar age. Their Disney Princesses days had long past by the age of 10, nearly 11.

Every change of season I get to sort through the hand me downs from her sisters.

Clothes hold many memories. Their clothes at age 12 started to change from little girl fashion to sassy tween.

Memories of this period where they became less dependent on Mum and Dad come flooding back.

Just like the Disney Princess costume, this is a sharp reminder of where Isla is at and that she is developing at a much different pace.

I acknowledge the feeling and then quickly move on, doing what I can to bring maximum happiness to our girl.

She is definitely not worried of what people think of her so I shouldn’t be either.

2019 almost in the rearview

With 2019 almost wrapping up, what is the one thing everyone always seem to do?

Reflect! In those 365 days, some of us have experienced new family additions, death, new jobs, travel, and ultimately life’s up and downs.

Whether it was a difficult year for you or one full of blessings, there is always something to look back on.

It was a very mixed year for my household. With me in school full time, along with two jobs, we found many days to be stressed and filled to the brim with things to do.

My husband, Aaron, was working his full time job which requires he work both day and night shifts, and the two oldest boys were off in school during the day with the youngest at home with our wonderful nanny.

Many of our closest friends and family warned me though, “Life will be tough with one parent’s income gone while he/she attends school full time.” “Nights will be long and sleep will be short.”

Nearing the closure of my second semester, I can fully understand the warning lights that were going off.

But when you have been going to college for ten years, toughing it out for one more semester seems like the cherry on top of a nice big sundae.

In reflection, I am so grateful that I took the leap and applied for the program this year rather than putting it off again. I am also grateful that my children can see me graduate and understand that not all plans go accordingly, and that is ok!

You have your own path to follow, and never should compare that to others.

At the beginning of the year, Oliver also experienced his first seizure.

Test and scans later showed that it was not epileptic related, but that he was prone to them at night while sleeping, for whatever reason.

Genetics did come back with an abnormality in a gene, but we have yet to dig into that box of surprises. With him in kindergarten this year, we had every emergency number we could think of set up with the school, prepared for whatever may happen.

We may not have answers for the reason, but writing this today, I can thankfully say that he has not experienced another.

In fact, all three children have grown and thrived in their own, unique way!

While reflection won’t always lead to some awe-inspiring motivation, there may be something you can pull and learn from once it is in the past.

Although I will still be under the current stress of running a very busy household, while in school and working full time, I can at least appreciate that I have successfully completed two semesters with one remaining.

With the household under semi-control, there will be one day when I finish and understand the path set out for me was all for a purpose. Failure and all!

2019 – Five things I’m thankful for

We are about to wave goodbye to 2019 and say hello to 2020.

New Year time is often a time to reflect upon the happenings, drama, dilemmas we’ve gone through in the previous year.

It’s also a time to celebrate the achievements and milestones that have been reached. 2019 has been a crazy, busy year for our family and seems to have gone by in a blur but as I look back here’s five things I’m thankful to 2019 for:

1) Good health – 2019 has seen our littlest guy keep in the best health he’s ever had.

We’ve avoided hospital admissions and we’ve seen him get stronger and stronger.

We’ve been able to manage the unwell days at home and this has meant less time for our family to be divided by hospitals! I’m thankful that the rest of the family has kept well also which has meant less risk of our little guy being ill.

2) Spending time as a family – over the course of 2019 we’ve been able to spend many days out as a family.

We enjoyed a summer holiday, we’ve had trips to the cinema, we’ve had movie nights, played at the park, went on adventures.

We’ve celebrated birthdays, school achievements and family occasions. We’ve eaten numerous ice creams and just hung out together.

We’ve grown closer as we learn to accept and adapt to both our boy’s needs.

3) Our support network – I’m so thankful for the family and friends that continually support us on a daily basis.

For those that offer practical help like doing baskets of ironing, sitting with the boys, getting housework done, accompanying us to appointments.

And for those who send messages of support or ask how we are. To those who invite us out so we can have a break and for those who help care for our boys so we can have a break.

We are blessed to have such supportive people in our lives.

4) That we’ve grown stronger – I’m thankful that over the year we’ve not only stayed strong but got stronger. We’ve worked through challenges and remained positive in all we do.

We’ve worked as a team and have stuck together through it all.

5) We had a wish granted – 2019 saw our littlest guy have a wish granted from a wish making charity.

He wished for a home spa pool so he could swim and do hydrotherapy at home.

His wish was granted and with the help of some fantastic family and friends we were able to build him a super hero therapy hut to house the pool!!

So as we leave behind 2019, I’m going into 2020 with a thankful heart. My goal for the year ahead will remain the same as it always is: to take one day at a time and to say “it is well with my soul”.

Nativity! But what part for a disabled child?

In case you hadn’t noticed, we’re in nativity season! A stress fuelled time of rehearsals, costumes, children trying to learn their parts, performances, tears and tantrums (and that’s just the adults!)

Most schools will have done theirs by the time term ends, while many churches have theirs still to do the weekend before Christmas.

Tensions are running high, no one can find the stuffed sheep, and someone has to tell little Jack that the actual shepherds didn’t wear Spiderman dressing gowns.

A while ago I read an article in The Independent about what the nativity role children are given might say about them.

It’s a great article, spot on in many cases, and even manages to introduce a new part to the nativity performance… ‘First Lobster’!

There’s plenty about what it takes to be Mary, Joseph, the Star, shepherds and wise men… but as I read it I was distracted by the thought that people arranging a nativity play do actually have the unenviable task of allocating these roles.

That whatever method they use to choose, there will be accusations of favouritism, partiality, preference or discrimination leveed against them, sometimes fairly, often not.

We have two children who have had markedly different nativity play ‘careers’.

Our eldest, Phoebe, has played every role except Joseph over the years, and at 20 is still on standby to do a reading or to narrate if required. James (now aged 17, autistic with learning disability and epilepsy), one the other hand, was shuffled onto the stage wearing his dressing gown and a tea-towel a few times, but there the creativity ended.

There have been stories over the years of disabled children being excluded from nativity plays altogether.

A few years back a school was taken to the Special Educational Needs and Disability Tribunal, which ruled that the school had broken the 1995 Disability Discrimination Act and ordered governors to apologise in writing to the boy and his mother.

So, what nativity play part is there for a disabled child, and what does the answer to this question tell us about society as a whole and us as a part of it?

Well, my starting point has to be that EVERY part should be open to ANY child who might want to participate. To exclude children with additional needs or disabilities from certain ‘high profile’ roles, limiting them to very minor, sometimes made up, parts is to discriminate against them.

To exclude them entirely is inexcusably shameful.

All sorts of excuses are proffered, such as that “We have to think about everyone, not just (insert child’s name)”, or “We’ve had complaints from parents that (insert child’s name) will ruin the performance”.

I’ve heard similar comments used to excuse excluding disabled children, young people, and adults from nativity events as a whole… “We have to think about the rest of the people…”, or “We’ve had complaints that (insert name) makes too much noise/is too disruptive/doesn’t sit still during the nativity event”.

In both cases, these attitudes shame society and should have no place in a school or church.

At its best (and it’s a low best) this is lazy thinking, taking the easy route by excluding anyone whose participation requires a little more thought and a little careful planning.

At its worst, it is active discrimination, a hard-hearted, self-serving attempt to create what some might view the ‘perfect’ nativity to be.

I have, however, been encouraged and thrilled to see stories of disabled children being actively and creatively included in nativity plays.

A friend of mine, whose disabled daughter was cast in the role of Mary, with everything arranged so that she could play this part, wonderfully capturing the beauty of God’s radiance shining from her.

Or the boy who found it impossible to stay still, so was cast as the Star and given freedom to run around, recognising that (according to ‘The Sky At Night’) the star of Bethlehem was probably a comet, and that comet’s MOVE FAST!!

Or the boy who in the past would cling to his children’s workers leg, but this year was encouraged and helped to take part and shouted out his line with considerable enthusiasm!

Any part can be adapted or creatively arranged so that any child can be given that role, if they wish, whether they have a disability or not. If we can get this right at Christmas time, the time when the God-child entered the world to save everyone, not just the abled, then this can help us get it right for the rest of the year too.

Jesus’ birth wasn’t a sanitised, well behaved, professional, slick, orderly event… childbirth rarely is even in the most clinical of environments, but throw in some shepherds, animals, the filth of a stable, a myriad of angels, and the chaos must have been extraordinary (poor Mary!)

Let’s see the nativity play as a gauge of where our society has got to on the road to accessibility, acceptance, inclusion and belonging.

For a few, there is indeed ‘Good news for ALL people!’, for others, they are arriving at Bethlehem but still have a lot more to do, for many, they haven’t left Nazareth yet, there is a long journey ahead, and they haven’t even borrowed a donkey.

Where is your school or church on that scale?

The lows of the Festive Season for Special Needs Parents

I did it again. I got complacent.

You know when things go well for a while and you start to feel like you can plan things and commit to events?

Well that was the mistake I made. Usually this time of year is when I am at my most tentative.

I don’t want to get too invested or too excited as at any moment the metaphorical rug can be pulled from beneath my feet and leave me face down, bruised and disoriented.

Amy was poorly for a week recently. It was the return of c-diff. It was literally a very poopy time for us all.

She recovered, she returned to school, and would you believe… I even for the first time in almost 5 years got a job! Only 4 hours a week, albeit a job nonetheless.

Things were going well. Sure, a lot of Amy’s friends were suffering colds and various infections, but I hoped that soon we would all be fine and start to do festive things together.

When things go well for a while, you almost forget how tough it can be and also how suddenly it can strike again.

You don’t want to live in fear, and it isn’t feasible to live in fight or flight mode all of the time… so complacency is natural, even in our unpredictable world.

We planned a trip to a local event called Lightopia. It was to be an action packed day.

A family breakfast outing in the morning. A SEND Christmas party in the afternoon, and then the magical lightopia.

I was a little apprehensive as generally Amy goes to bed very early these days.

However I thought the magical lights might captivate her imagination and provide her some much needed sensory stimulation, a new family experience, and some new memories banked up to treasure forever.

Right from the start of the day things weren’t quite right. I couldn’t quite put my finger on it but she was definitely a bit moodier than usual.

She was hard to settle even with songs or videos. We were having to work hard at distracting her from whatever was bothering her and keep taking her outside for walks.

We got to the SEND party and she was overstimulated and overwhelmed. She seemed to check out mentally. I couldn’t tell if it was seizures or a sensory issue.

Her cheeks reddened, her tone dropped, and she seemed very sleepy and unsociable. The show must go on we thought.

We hastened to lightopia… which by the way is a huge outdoor extravaganza of giant lanterns and lights.

It’s a real festival of colour and music all set up in a nicely wheelchair accessible park fairly local to us. We queued early and even got to be at the front of the priority queue.

It was so disappointing. I really wanted to look at her eyes with the displays reflected in them, staring in amazement and wondering what’s next.

Instead, she couldn’t really keep her head up, she was snotty and cold, and whining constantly. It’s not her fault at all, but I did having this ache in my heart that we had somehow failed again to do what other families were doing with such ease.

Everyone around us seemed so happy and excited. Kids running a long cheering, whooping and posing for pictures.

Don’t get me wrong. I still had a great time. I’m still glad we went. However, it became clear towards the end that Amy was coming down with something.

It is now 5 days since then and she has spiked constant high temperatures, increased seizure activity, increased work of breathing, hasn’t tolerated feeds for 5 days and the list goes on.

We are all absolutely exhausted and I’m pretty sure she is sick of me intervening with her. This morning after her shower I dressed her, she let out a sigh, and rolled away back to sleep with her back to me. My heart aches.

You know when you’ve had a bad cough for a few weeks and you’ve been really congested?

You start to forget how great it was to be able to breathe clearly, or to breathe without launching into a migraine inducing coughing fit.

It’s a bit like that when Amy’s unwell, I start to forget what more than an hours sleep feels like. I forget what it’s like to not have to constantly check obs and perform suction. It’s so draining for everyone involved.

I had so much planned in the run up to Christmas. My favourite thing about Christmas is the build up.

The markets, the children’s events, parties, the meeting Father Christmas and so on.

It seems somewhat ironic and unfair that winter is the time of year for everyone’s social calendar to be busting full of events.

It has made me decide that from Spring next year, I am going to pursue as many leisure activities as possible with Amy.

Whilst her health is good we really need to take advantage and go out and enjoy the world to her full potential.

I am imagining adapted wheelchair bike days, holidays in accessible apartments, days out with her friends, all of it. I want to make up for lost time.

Also this week, Amy’s best friend Mia is very poorly. We all love Mia very much, she’s like an extended family to us.

Usually this is the time of year where all of the special needs parents in our circle make a constituted effort to help out fellow families stuck in hospital.

We all know too well just how difficult it is. It can be soul destroying.

The days and nights are long, the stress is high, you miss out on so many things, you stare at walls, you stare at the door just to see who walks past.

Any visitor is welcome. Any small talk is welcome. Food deliveries are celebrated. It has been hard accepting that visiting our friends in hospital right now would be selfish and irresponsible as we risk bringing in germs from Amy’s current illness.

It all shows what an isolating time of year it can be for us.

I am so grateful that we have somehow avoided a hospital trip with this current illness, but equally this is a testament to the fact that we are working so hard on suction, nebulisers, positioning, pain relief and so on in the hope we can prevent this turning into pneumonia or a prolonged seizure.

I am frustrated that I got complacent. I am sad to have missed Amy’s Christmas play (again). I am sad that I didn’t manage a 100% attendance at my first month back at work.

I am sad about so many things. I am sad that our children have to suffer that little bit extra and work so much harder. I can’t wait to see her smile again. I can’t wait for her to breathe clearly again.

I am sure my Christmas cheer will come back. I am sure we will make some family memories soon.

I am sending much love to our friend Mia and her family… and indeed to all other families out there not getting to enjoy this festive time of year as they should be.

I’m so thankful that you’re her big brother

There’s a scary place that I catch myself thinking about more often as the years go by.

I don’t allow myself to stay there, or to be preoccupied over this place, for very long. I can’t because it’s all too much to bear and I solemnly keep these thoughts to myself.

The place that terrifies me most is the FUTURE.

Anxiety sets in whenever I envision what lies ahead, far down the road. It ignites great worry.

However, glimpses of the future feel a little less frightening, when I remind myself that YOU are in your sister’s life.

As a big brother to a little sister with multiple disabilities, you’re wise beyond your years. Your heart is filled with empathy; more than most people possess.

Although I know it’s not always easy for you, and you certainly sacrifice a lot, I’m so thankful that you’re her big brother.

When you were eleven years old, you said something to me that was beautifully moving; it meant more than you’ll ever know. You touched my heart with your words as you sat playing with your sister one afternoon.

“I’ll take care of her when you get too old.”

Your unexpected declaration caught me completely off guard. Tears stung my eyes as I watched you gently pat her on the back and resume playing with her.

You had no clue that my heart had just melted into a puddle; you were oblivious to the pride I felt at that moment.

How could a child come to such a heavy conclusion, out of the blue? It was as if you could see straight into your Momma’s soul.

Even though I’d never expect you to shoulder the responsibility of care alone for her, that day, you gave me a sense of peace.

Knowing that the two of you would have each other, the future seemed brighter.

You are a teenager now, and you relish your solitude. More of your time is spent in your room listening to music and playing video games.

That doesn’t lessen the fact that you care deeply and still harbor concern for your little sister.

Over the years, I’ve watched you learn how to cope with things that most kids your age could never grasp.

For all the times you came running to my aid when your sister had a seizure…for all the times you started a timer, brought me the oxygen tank and even called for help…I’m truly sorry that you’ve had to endure some really scary trials, but I am so thankful that you’re her big brother.

You are a whiz at operating her wheelchair ramp and helping her in and out of our van.

When we’re out and about, you lovingly do these things for her, without my having to ask.

Countless times in the grocery store, you’ve offered to push her along, without hesitation.

I’ll forever cherish memories of you spinning her around in her chair or walking a little too fast with her, just to make her laugh.

For all the times you’ve been dragged to therapy sessions and specialist appointments without a single complaint. For inquiring every afternoon if she had a good day at school, I’m so thankful that you are her big brother.

Our home, on our family’s land, will someday be yours, should you decide to live here.

When we briefly discussed this recently, you nonchalantly mentioned that your sister would be welcome to live here with you.

Once again, you hadn’t the slightest inkling that you made my heart burst. You had no hint of how comforting your kind profession was to me.

Dwelling on the future is daunting. Uncertainties bring fear.

One thing that I know for certain is that I am so very proud of you. Appreciating that you’ll be on her side, I can breathe a little easier.

It’s clear that you’ll see to it that your sister is properly cared for. You carry an abundance of compassion and a paramount sense of family. That speaks volumes about you, son.

For all that you do, and for all that you are, I’m so very thankful that you are her big brother.

When Father Christmas is your worst nightmare

Hadley has Masklophobia: an uncontrollable fear of masks, mascots, or anyone with their their face covered (making them unrecognisable).

Sadly, something that falls into this category for him, is people dressed as Santa. He is terrified. Even if it is somebody he knows.

Presumably because the fake beards and hats cover too much of their faces. This phobia has slowly progressed to a general anxiety around Christmas related things, including singing Christmas decorations and toys.

Every year we hope that things might change.

In fact a few years ago when Hadley performed in a school nativity play dressed as a robin, we thought perhaps we had made progress, as it was hugely out of character for him to want to be part of any sort of production.

And when I dressed as a Poo Emoji (to raise awareness for Changing Places), he found it hilarious. But although this made him more confident around people in costume, the fear he experiences when somebody’s face is covered is still very active.

I think perhaps worse now he is older. So it is with disappointment we start preparing for Christmas in our usual fashion.

Now, I’m not a hugely festive person – although I may have purchased some outside lights that will shock my family – but even for me, it makes this time of year a real challenge and a bit depressing.

And for Hadley’s twin, it’s a real blow.

I’d give a lot to be able to be spontaneous. To just pop out in December and not have to neurotically check ahead to make sure there will be no FC related ‘surprises’.

Of course usually we just don’t go out, because everywhere is Christmas-tastic by now!

Just the thought of accidentally bumping into somebody dressed as Santa is enough to cause Hadley hideous anxiety attacks that make him vomit.

It’s so distressing for him. Bit heartbreaking for us too. Especially if it’s somewhere we do actually know would be ‘safe’.

It would be amazing to be able to go to the pantomime, Christmas fairs and Santa’s grotto, and do all those lovely ‘build-up’ activities that I see everyone else doing with their loved ones. (Social media is a real git for making you feel jealous isn’t it?!).

All too soon my kids won’t believe anymore, and we’ll never have had those special memories.

It has crossed my mind to tell Hadley the ‘truth’ in the hope that might help, but I worry about ruining things for his sister.

What do you do? How do you choose between your kids? Though ironically, Hads isn’t as concerned about the thought of the ‘real’ Santa popping down the chimney and leaving him a gift, because it’s his ‘real’ face and clothes and not a fake beard.

On Christmas Eve he is actually a lot less stressed than throughout the rest of December. So we’ve ploughed on in hope things would change – rightly or wrongly.

I try to take my daughter out separately to do as much as we can, because I hate the thought of her missing out and being sad at Christmas.

We’ve just come back from a sleepover with friends where we bought tickets to a winter wonderland, which was beautiful and full of all sorts of things that would have had Hadley heading for the hills. But it just never feels quite complete, being without the boys.

Not sharing these moments as a family. I think she feels it too.

So if I seem a little ‘bah humbug’ and not particularly full of festive cheer…. You’ll know why. Roll on 2020.

Twinkling Lights

Twinkling lights, stars so bright,
Clear dark skies on a Christmas night.
Gifts wrapped, piled under a tree,
Eyes wide, hearts full of glee.

Twinkling lights, stars so bright,
Some children scared of the sight.
Routine is gone, crying for their norm,
Despite Santa comin’ early in the morn.

Twinkling lights, stars so bright,
Beeping of machines, wires pulled tight.
Watching them closely, begging them to fight,
Maybe a Christmas miracle will happen tonight?

Twinkling lights, stars so bright,
No where to call home, not just tonight.
Santa will find you no matter where you lay,
A parent promises through hope and fear.

Twinkling lights, stars so bright,
A shakey hand turns off the lights,
Memories flow through streams of tears,
It’s easy wish for this time last year.

Twinkling lights, stars so bright,
An early dinner before the flight.
A plane taking off, watching it fly away,
Fighting the tears, hoping next time they’ll stay.

Twinkling lights, stars so bright,
A diagnosis which demands an unfair fight.
Family gatherings, more important this year,
Time spent well sheds many a tear.

Twinkling lights, stars so bright,
Clear dark skies on a Christmas night.
Wherever you are this special night,
I hope some peace & love holds you tight.