Fears for the Future

At the start of every year, I feel a little overwhelmed.

What will the year hold?

There is so much of it to go and so much to do and Summer seems so far away.

The dark days of winter seem to leave me with more time to think- more time to worry.

Though most of my worries centre around Alfie’s health, they also linger on the future Rory and Alfie will have.

As they continue to grow and develop, there differences become more and more apparent.

As Rory learns to run and jump and lead a life as his own, anxiety sets in that Alfie will feel left out and resent his brother.

Will Alfie start to question why it is him that is disabled, and not Rory?

So far, having Rory has always encouraged Alfie to try harder at everything he does.

He wants to keep up with his brother, but for how much longer?

My fears are that Alfie will grow tired and resentful of the life Rory can have, the things he can do and the independence he is already enjoying.

But it works both ways.

So much of our time is spent making sure Alfie has everything he needs, that he is healthy, that he attends his appointments and that every activity we do is accessible for Alfie too.

Rory already understands that Alfie needs us more and needs our help with things that now come easily to Rory.

He even tries to help us feeding and changing Alfie as much as he can.

But will this last? Will he not grow to be jealous of the attention and time Alfie receives from us?

Though we try to keep it as even as possible, there are always differences in the time we spend with each of them and the activities we can do.

These are the thoughts that plague my mind day and night, the things that keep me awake.

My children are my world, and I never want either of them to feel like they are in battle for my attention, yet that often appears to be the reality.

Though no one knows what the future holds, there are some things that can’t be changed.

The fact they are identical twins mean they have the same genes. They spent 7 months together in the womb and have adored each other ever since.

Though they fight, as so many siblings do, they are also fiercely protective of each other.

They are best friends. They see beyond their differences and interact as any twins do, they are intuitive to each other’s emotions and moods and look to each other for reassurance.

They may battle for my attention but the love they have for each other, and I have for them is something that cannot be broken or changed.

One thing that helps is the bond our family has.

We have been through much more than most and seen many dark days, yet our beautiful boys helped us through and we will always be there for them.

To pick them up when they are down, to cheer for them in everything they do; to hold them tight and to kiss them goodnight.

I may have many fears, but one thing I know for sure is our little family can get through it all.

A New Bag for Christmas

“What do you want for Christmas?”

That question from my family elicits the same response from me, every year: NOTHING.

I can never really think of one specific thing that I truly need for myself.

Of course, Starbucks gift cards are always treasured and appreciated, but beyond that, I honestly don’t feel like I need anything in particular.

Except for this year.  I was seriously in need of a new bag.  I’m not talking about a fancy handbag; it’s not a new COACH or a Michael Kors that I desire for carrying around my necessities.

I don’t long for an ultramodern Gucci or a glamorous Louis Vuitton purse to possess.

It’s much simpler, yet so much more complicated than that.

My youngest child is eight years old and the bag I desperately need updated is my diaper bag.

Mothers usually tote around a diaper bag for a few short years; until their child is potty-trained and they no longer need one.

They go back to cute purses as their children grow and outings no longer require diapers, sippy cups and favorite toys.

Being a mother to a child with special needs, I will need to carry one for much, much longer.

A small bag for my wallet, keys, and lipstick just will not do.

How could I fit our diapers, wipes, hand sanitizer, blankets and a changing pad (for diaper changes done in the car) in that?

I’m not whining or even complaining….My daughter absolutely lights up my life and it’s my privilege to care for her.

However, the straightforward task of choosing a new bag isn’t one that I take lightly, because of her needs.

Will it neatly contain her emergency rescue seizure meds, sensory pressure vest and several crinkly toys?

Can it accommodate her daily medications, sippy cup, and bottles of Pediasure in an organized fashion?

Is the strap long enough to affix to the back of her wheelchair?  Will it fit adequately along with the portable oxygen tank (in case of a seizure) that goes everywhere with us?

These are the important traits I require in a bag.  I couldn’t care less if it matches my shoes or goes with my outfit.

My bag serves a much greater purpose than that; it has a bigger job to do.

It had been years since I bought an updated one for myself, and I know there will be many more to purchase in the years to come.

To my delight, my amazing husband surprised me with a new diaper bag this Christmas.  He did very well.

It meets all my strict criteria; it holds everything I need to attend to our daughter’s daily needs. And, I must say, it’s also pretty cute too.

Let Them Have a Break

We all need a break from reality every now and again.

As adults, most of us like to take a holiday away from every day life to forget about work, washing and everything else!

We all love some time away to relax and enjoy ourselves, quite rightly too!

It’s so important to look after ourselves and de-stress.

But it’s so important for children too and for children with additional needs it’s absolutely no different.

If you are a parent of a child with a disability then you will know how much is involved with regards to their needs and care.

There are days where you feel like you don’t know how you will fit in all the appointments and therapies but just stop for a minute and picture yourself in their shoes.

If you are feeling overwhelmed then believe me when I say, they will feel the exact same way even if they don’t show it.

Perhaps they just get on with it or maybe it’s a bit of a battle to get them to do all these appointments and therapies but either way, they need a break as much as we do.

So take the time, clear the calendar, book a break away.

As a parent, this might seem like hard work to do but I can guarantee you this is something you will not regret.

Spoil them!

Everything I do, I do it because it will help my child.

He has to do physiotherapy every single day, he has to wear his splints every single day, he has to come to appointments and he has to work hard but it’s all for him, to help him and I know that one day he will understand that everything we had to do was for very good reason, but this week we had a break and went on a little holiday.

I didn’t make him wear his splints all the time, we did absolutely no therapy and there wasn’t a professional in sight telling us what we had to do.

We laughed, we had fun and for one week, we were a “normal family” (if that’s even a thing!)

It may have not been the kind of holiday I had been used to before I had children but seeing my children happy and free from every day life has been the best kind of holiday I’ve had probably ever.

So, next week we will have to go back to the reality of all the hard work involved with my sons disability but some family, therapy-free time this week is something we all needed and I urge each and every one of you to do the same.

Too Terrified to Talk

As I walk my little girl the seven minute walk to school she chats away non stop. We laugh together, relaxed and care free.

Then we reach the school gates and everything changes.

Her shoulders go down, her eyes look only to the ground and her stride slows. Most significant of all though: she immediately stops talking, even if in mid sentence.

A flick is switched and that’s the last her voice is heard until I pick her up again at 3pm.

My daughter has selective mutism.

It’s an extreme anxiety condition that means she physically can’t bring herself to speak in certain situations despite being very verbal in other places.

You would be forgiven for thinking my daughter hated school. The reality is she doesn’t.

She has friends, loves learning and enjoys the routine. But she is too terrified to talk in that environment.

She never spoke a word in the two years she attended nursery and hasn’t spoken in school for five years.

Like a lot of people with selective mutism she is also on the autism spectrum and has a further diagnosis of generalised anxiety.

Can you imagine being too terrified to talk?

Too terrified to ask for help when you don’t understand what the teacher has said.

Too terrified to ask for a rubber or to sharpen your pencil.

Too terrified to raise your hand to answer a question even if you know the answer.

Too terrified to even ask to go to the toilet.

It’s debilitating and disabling.

People assume she is making a choice, controlling, even manipulating things.

In actual fact she is so terrified her voice is unable to form words.

She told me once it was like the words just refuse to come out of her mouth no matter how hard she tries.

She wants to speak, she just can’t in certain places or to certain people.

It’s not bad behaviour it’s severe anxiety.

So her teachers have never heard her speak. Her classmates don’t know what her voice sounds like.

She’s never had words to learn for a class assembly or school play and assessing her reading ability has caused problems because she can not read aloud.

Selective mutism affects her education.

It affects her socially and emotionally and it robs her of so much.

Yet all the time at home she’s chatty, funny, and displays a large complex vocabulary and a beautiful delicate voice that I never tire of hearing.

She reads aloud, converses freely and is animated. She dances, plays and jokes around.

Yet outside of her home she’s like a rabbit caught in headlights, like a puppy hiding under a blanket, like a statue frozen in fear.

Too terrified to attract attention, too terrified to talk.

Beautiful, clever, but consumed with anxiety.

Bound by the reigns of selective mutism with no means of getting free.

Imagine having words but being unable to use them?

That’s her life every single day.

That’s selective mutism.

School and Beyond

Our eldest daughter has just finished school. She is neurotypical and has a bright, exciting future in front of her.

She is fortunate to be able to attend University this year. She will make new friends and have new experiences.

She is responsible, mature and independent.

Although we don’t know what the next few years will bring, we know she is on the right path to being an independent adult.

I wonder how it will feel when Isla, who has autism and a rare chromosome syndrome, leaves school.

In NZ if you are enrolled in a special school you can stay at school until 21.

Although Isla is only 10 and we have quite a few years ahead, I can’t help thinking about her future.

One of the biggest fears of a special needs parent is wondering if your child will ever have an independent life.

Will they ever be self sufficient without you?

This doesn’t come from a place where you think they will be a burden. You just worry how they will cope without you when you are no longer here.

Everyone needs a purpose and to feel valued.

Finding the correct path for a young adult with a disability after leaving school is going to be challenging I am sure.

We are already trying to think of business ideas we can embark on.

Something that Isla will be able to take part in so there will be something for her to do at this stage of her life.

The key is to find something that we both have an interest in. It would have to be financially viable without too much stress.

It is not surprising we haven’t come across the perfect idea yet!

For those with autism I can imagine the transition from school life will be hard to deal with.

Shifting from the routine, predictability and socialisation that school brings to one of isolation and having no direction will be tough.

Some parents say that there is a black hole when their child finishes their school years.

We can only hope when Isla reaches that age and stage there will something for her to do to give her a purpose.

Some comprehensive transition support available to guide us through. An increased acceptance of disability in society.

An opportunity she is keen to participate in. A group home available for her to lead a semi independent life.

We have many hopes for Isla.

When we are entering this time of her life we also hope we will be just as excited about her future years as we are about her big sister’s.

Acceptance is the Most Precious Thing in the World

For the first time in many years, we spent Christmas away from home.

As Sam’s hoist, equipment etc is all there, it’s been easier in previous years to just stay put and have family and friends over to visit instead.

So, van packed as if we were going on a month-long road trip (seriously, just how much STUFF does this child need?!), we braved the pre-Christmas traffic.

J likes to remind me of life BC (Before Child), when we travelled around Japan for 3 weeks with just one bag each.

My, how life has changed!

I am blessed not only with an incredible little boy, but also a 10-year-old niece who has a heart of gold and a 4-year-old nephew, who is just the kindest, most gentle little boy.

Isaac hasn’t really met Sam that much before; the last time he was only a baby really.

I had no concerns about these two and Sam, Daisy has seen seizures many times before and knows what to do.

But how would the little one react?

Some of Sam’s seizures are seriously aggressive, and they can be more than a little frightening to witness. I had nothing to worry about.

After being stuck in his chair for hours, Sam was glad to be able to stretch out on the floor – Isaac hopped off his chair and went straight over to say ‘Hi’.

Mum gently explained that Sam can’t talk… then stopped herself as Sam gave Isaac a ‘thumbs up’ sign and smiled at him.

Isaac didn’t need any more encouragement, here was a new play friend and that was all that mattered!

He sat down with Sam and happily played away, before long he passed a book to Daisy so she could read to them both. Holidays can be acutely painful – watching other children run and excitedly play while our little boy can only watch.

That gentle acceptance made more of a difference to Sam and to us than those children probably realised.

They don’t see Sam as different, because their parents have taught them that different doesn’t mean better or worse.

How much better would our world be, if everyone remembered that?

No Challenge, No Change

I’d love to go into the fascinating details of neuroplasticity, but I won’t bore you with the details.

I’ll simply say that each part of the brain is in charge of a different function.

It is the well-choreographed interaction between these different areas of the brain speaking to one other that allows us to move, speak, and gives meaning to what we feel, see or hear.

When one area of the brain is damaged or absent, an adjacent area can sprout neurons to assume the function of this damaged area.

However, this can only happen if the child experiences active learning and is also moderately challenged.

The experiences that you create throughout your day can provide endless opportunities to challenge your child and help them move and learn.

This will look different for each child, and only you, the caretaker, can identify the best type and time for these games/activities.

The best way to help a child learn is through play.

Play is meaningful and functional at any age, and at any stage.

For any child, think about where to place a toy that will encourage a reach, what position may increase the challenge, entice your child to participate, and only offer positive reinforcement when it is due.

It’s easier to create and recruit neurons to stimulate movement when useful information is gathered.

Scientists have determined that it takes approximately 400 repetitions to create a new synapse; however this can be done is as little as 10-20 repetitions if done during play.

Remember, neurons that are wired together, fire together.

Each therapy session that your child attends should be fun and functional.

I always explain the concept of neuroplasticity to the families with whom I work.

But, even more importantly, I think it’s imperative to teach every child that not everything is going to be easy, but that we, their support system, will do anything in our power to help them succeed.

It’s never too early to show a child not to back down from a challenge.

Life is a sequence of facing, and conquering, challenges head on.

At times, the challenge will offer a wonderful victory, a sense of achievement, and another obtainable skill for the child to partake in.

And yet, at times, a failed attempt can highlight what modifications need to be made in order to achieve this new skill.

The brain is an unpredictable organ.  Only you, the caretaker, know the best way to inspire your child.

Either way, every minute of every day, remember…

NO CHALLENGE, NO CHANGE!!!

I Will Never Predict His Future

I will never, EVER predict my son’s future.

EVER.

Many have tried to, mainly the professionals who have come across him, if they don’t know him already, all I have to do is tell them that he has quadriplegic cerebral palsy and it’s like they think they know everything about him.

I have been told “he will never…” fill in the blanks yourself, there’s a huge list!

Recently at our paediatrician appointment, his weight was brought up in conversation as he hadn’t gained as much as expected.

I was quite surprised and asked if this was maybe due to him using up more energy with all his physio that he does.

I was told that it’s probably because he won’t eat as well and as much as other children as his age.

I laughed, like actually laughed out loud, I didn’t really mean to but it just came out!

I went on to tell his paediatrician that he eats so much better than his fussy sister and has no trouble with his food at all!

I’ll tell you exactly what he said next:

“Well, with his cerebral palsy he won’t eat as well, you probably don’t notice it because you’re just used to it”

Yes. Seriously.

I didn’t say any more, I was in no mood for an argument at that time but it made me wonder why people seem to think they know what my son can and can’t do because he has cerebral palsy.

He has already achieved so much more that people ever predicted he could and just today he even learned to roll from back to front all by himself.

HUGE milestone, I still feel a bit emotional about that one!

Yes, he has cerebral palsy and yes, all 4 limbs are affected, he does struggle with a lot of things but he works incredibly hard and I have no doubt that he will continue to surprise everyone.

So when people ask me “will he ever sit up?” “will he ever walk?” “Will he be able to live independently when he’s older?”

I tell them that I can’t predict his future.

Even if I could, I wouldn’t want to because that’s for him to decide.

One thing I do know though, he will never give up and one way or another he will get where he wants to go and I’ll be behind him every step of the way.