Walking a Knife Edge

In a matter of days, a little boy we love very much has gone from relatively happy at the weekend to seriously ill and in a dangerous condition in hospital.

He is one of my boy’s SN buddies, and over the past few years our two families have become close.

This is not the first time I’ve had to watch from the sidelines, unable to do anything tangible to help.

It’s brutal and unfair, a 3 year old child should never have to go through what this little chap does.

Yesterday was difficult, my thoughts were all over the place thinking of my late Dad, what might have been for Sam if the seizures just stopped, and then later on chatting to this little guys mum over the internet, trying to keep my spirits up and going into full-on Mum mode (!); have you eaten today? When did you last have something to drink?

When you’re in the whirlwind of your child being seriously ill you forget the basics.

We live too far away to be much practical help, but at least the internet offers us to chance to make sure those we think of often are aware of it.

I lay awake last night, listening to my boy’s soft breathing as he slept. He looks so perfect and peaceful when he’s asleep.

You’d never know that a storm of epileptic activity is raging in his little head, constantly. But for all of it, he is happy.

I grieve the life I thought he would have had, and for what has been taken from him by the relentless seizures.

But when another child so similar to my boy is critically ill it’s impossible not to feel at least some of the helplessness that his parents are facing.

At least, thanks to the wonders of modern technology, we have the ability to connect with other parents, and to support one another through the grief and rough patches.

Even if we can’t do so face to face; in the SN world, there is always an Army at your back even if you don’t know they are there. x

10 Ways to Make Water More Exciting!

It’s recommended we drink approximately 2 litres of water a day, which for some (myself included) isn’t an easy task.

To try and encourage myself to drink more, I’ve been looking at ways to make my water more exciting.

So far, it’s definitely helping and they are so easy to make.

It’s as simple as popping your ingredients into a jug or bottle of water and leaving to infuse for 2-4 hours.

To help you get started, here are some of my favourite flavours:

Cucumber and Mint

It’s so fresh and perfect for a hot day.

A top tip would be to tear up the mint before putting it in so you get all the flavour.

And, if you have the time, put in some frozen slices of cucumber.

Orange and Blueberry

Full of freshness, Vitamin C and antioxidants!

Pineapple and Jalapeno

This one is bursting with flavour and perfect for seeing off any of those spring colds.

Watermelon and Basil

You feel like you’re relaxing on the beach with this one and even better, basil is full of antibacterial properties.

Apple and Cinnamon

Not only is cinnamon great for helping with digestion, this combo tastes like Christmas in a cup and who doesn’t love that?!

Lavender and Blackberry

This one helps with feeling relaxed and is packed full of antioxidants.

Aloe Vera and Lime

This mix will naturally increase energy and fight fatigue.

Kiwi and Blackberry

I love the mix of these flavours together and another recipe that is full of antioxidants.

Chia Seeds

This is a bit of a strange one but is full of health benefits. Chia seeds are rich in Omega 3 – fatty acids.

Mix with some lime for a bit of flavour.

The texture does take a bit of getting used to but it you stick with it it’s worthwhile.

Raspberry and Rose

If you close your eyes whilst drinking this one, you almost feel like you’re sitting in a beautiful English country garden.

Rose has great anti-inflammatory properties and is also said to reduce anxiety.

Let us know what you think or if you have any of your favourites that you would like to share!

What Really Matters

How can I help them to realise that while they look at my son and pity him/us that, honestly, he is far more wonderful than they can possibly imagine?

I read a wonderful piece today, from 2011, by a lady whose son was dying from a rare genetic disorder.

As she explained, parents who will ultimately lose their children learn to live differently; they are the dragon parents, loving with an intensity and ferocity that is both amazing and terrifying in equal measure.

We have no idea what Sam’s future will be, but having him has given us a rare and beautiful opportunity to experience love in its purest form.

It’s like a slow-motion ballet; while other parents are speeding ahead, comparing exam results, which child is fastest/smartest/tallest/who has what role in the school play, we have the rare privilege of watching our son develop and gain skills that were considered impossible when he was tiny.

Other parents miss those little gains, they don’t get to appreciate the incredible complexity of muscle control that it takes to hold a pencil for example. Or to say a word. Or to smile.

We get to marvel at those achievements, and frankly we celebrate them as if our child had just won gold in the Olympics.

This week my boy managed to control his muscles enough to say Mum, and gave me a huge smile as I looked at him in utterly astonishment! He is brilliant; courageous, strong-willed…

I used to joke that he’d inherited my worst traits – I’m stubborn, I refuse to take no for an answer and once I decide to do something it’s virtually impossible to change my mind.

For my boy, these traits will give him the best possible opportunity to carry on developing, gaining those skills.

At the age of 5, he can now sit up with minimal support, something his medical team didn’t dare think he would ever do due to his poor tone.

Don’t get me wrong, I would do anything for him to not have to face seizures almost every hour, and to have a typical, ordinary life. Boring even.

But over the past half-decade I’ve come to realise what really matters isn’t having a typical existence, but having a happy one. And he certainly has that x

Redefining Daddy

We all have an idea about what a Dad is.

A lot of our standards are set by our own Dads but even people like me that grew up without one around much have an expectation about what “Dad” means.

Just to break it down to a few universal basics of what Dads do.

Dads

1. Go out to work to provide for the needs of the family.

2. Keep their wife and children safe and happy.

3. Fix things – from emotions to leaky taps.

4. Do the fun stuff, playing games and making a mess with the kids.

I am finding, however, that special needs is redefining what I can be and what I need to be.

Not just me but also their Mum is working out where she needs to be a bit different too.

All of the kid’s daily needs have caused me to ask a few questions about my role in their life.

What if..

1. Leaving for work means that your family won’t be able to cope that day?

2. You can’t protect your wife or children from the pain that they’re going through?

3. You are helpless to fix the problems that are occurring?

4. There is so much medication, treatment, basic caring and hospital time that you don’t know where having fun and playing games is going to fit in?

Writing this blog is proof of what I’m talking about.

Evidently, Dads don’t normally do blogs and neither would I if I weren’t a redefined Dad.

A lot of lonely hospital time, a need to share and a knowledge of rarely talked about issues have lead me to doing this – hoping that it may be helpful to others.

The reason I want to talk about this is that there is such a strong expectation of a Dad, that those who don’t understand your situation can sometimes heap a great deal of judgement upon your shoulders.

Oh, you don’t work? What do you do all day? Can’t your wife look after the children?

I’ve only this month come to the decision/recognition that my family need me home more than at work and that there really aren’t any hours left in the days to be out at work.

But already I feel the weight of the question that comes so often especially to men/Dads – so what do you do as a job?

I’m just using work as an example, of which there are many. As a special needs Dad we need to be less harsh on ourselves.

I mean… It’s in the title – SPECIAL NEEDS Dad, your child/family need you to meet their needs!

I believe that gives us the true definition of Dad – Your job is to be whatever your family and child(ren) need you to be!

If they need you at work, get out to work. If they need you to take care of them you take care of them.

If they need you to learn how to do physiotherapy, operate a breathing machine, become an expert in oxygen or passing tubes and making feeds then that’s what you do.

My two girls have redefined Dad for me because they’ve needed something else, somebody different and that’s okay.

I didn’t sign up to be just a Dad, I signed up to be their Dad.

So we can be proud of redesigning this role and our family will be proud that we’ve become redefined Dad’s just for them.

Holidays and Autism

I have gone ahead and booked our first family abroad holiday with a 3.5 hour flight!!

Not only that but I have told Cameron all about it already and the questions have started – thing is we have 370 days to go!!

– What plane will we be going on mum?

– What kind of engine does it have?

– Can I pull your suitcase to the desk?

– What is the rating of the holiday?

Thing is you see we do holiday each year, but we holiday around the UK.

We do log cabin breaks where we have seclusion and space where we can be relaxed and Cameron can be his loud quirky self.

When we go away it’s like military precision and I will show Cameron beforehand where we are staying and what there is to do nearby as I will meticulously plan everything so that he knows what’s coming and what to expect – and this formulae has worked so well for us for the last 5 years.

I’m going against the grain now though; I have started over the last couple of years pushing Cameron and testing his boundaries, at 9 I know he is more than ready.

A first thing first though is our impending two week half term holiday this year.

For the first week we will be taking Cameron over to Ireland to visit his granddad, this is home from home and a lovely easy break for us all which we do get in annually.

It has been a fantastic training method for us to introduce Cameron to flying and the hustle and bustle of airport travelling – the flight is a painless 40 minutes though and in less than two hours we are door to door.

For the second of the weeks though we have our annual log cabin break and we will be travelling up to Kielder Lakeside in Northumberland.

I have had the website up and shown him what’s what and the things he can potentially do BUT and I know all you autism mummies are going to wince in unity at this…

NO INTERNET CONECTION, AT ALLLLLLL!

So he is going to have a whole five days with no YouTube, no watching all those kiddies open the kinder surprises or watching Stampy Cat run around Minecraft or video clips of all those people playing ALL the games that we have purchased for him but still prefers to watch others play.

I have pre warned him though, at first he wanted to understand why as with previous cabin breaks we have had internet.

I explained that the area is remote and there is no signal but that there is the hot tub for him to swim, that there is a play station in the lodges and there is plenty of games that we can do as a family.

He seems to have accepted this and is telling everyone, “So, we are going on holiday and there is no Wi-Fi!!”

Ohhh, these 1st world problems we have.

So going back to the abroad holiday, yes we have Wi-Fi and a pool but I will not be making any plans for when we get there – I plan to have another first and try and enjoy a holiday with some suspense and surprises, after all there is nothing that I have put forward to him so far that he has not just got on with and shown me just how resilient kids can be.

Try it, plan something and tell them, “It’s going to be a surprise and a little different!”, just take their toy/tablet/comfort.

Start off small and grow your experiences as they grow, you will feel a new sense of release from the autism restraints.

Tilgate Park Officially Opens Space to Change

The venue, acknowledged as being the area’s “jewel in the crown’ with its nature reserve, fishing, lakes, gardens and forest adventure experience, already welcomes over one million visitors a year.

By opening the first, “Space to Change”, wheelchair-accessible toilet with changing bench and hoist, Tilgate Park will now be accessible to even more visitors.

The Space to Change enhances a conventional wheelchair-accessible toilet by also incorporating an adult-sized changing bench and hoist, supplied and installed by the UK’s leading away from home accessible toilet solutions company, Clos-o-Mat.

The improved toilet facilities form part of a five-year development plan for Tilgate Park, which includes improvements to parking, the access road, and paths.

Explained Vikki Fold, Crawley Borough Council’s community development officer,

“At a youth event, a teenage wheelchair-user said there needed to be more hoist-assisted toilets in Crawley.

Tilgate is having development work done, and the existing wheelchair-accessible WC was big enough to accommodate the extra equipment, so we thought it would be a good idea to tie it in.

We are committed to doing what is right for local residents and visitors, without damaging the Park.”

Added Samantha Buck, local campaigner for hoist-assisted toilet facilities,

“If you care for someone who is in a wheelchair, if they are bigger than a baby, you will probably need a hoist to lift them.

Without it, you can’t use the toilet facilities and have to either cut your visit short, or not go at all. A hoist takes up no space, but makes such a difference to families like mine.

It means we can go out and about, spend time- and money- at a venue, and relax knowing we can all access suitable toilet facilities.”

A Space to Change toilet takes a standard ‘Document M’ wheelchair accessible toilet, adds more space to it (if required) to achieve a minimum 7.5m2, and an adult-sized changing bench and hoist.

Under British Standards, Changing Places are in addition to that standard wheelchair-accessible toilet, at least 12m2 (3m x 4m), and include a ceiling track hoist and height-adjustable adult-sized changing bench.

Campaigners experienced that many venues could not allocate the additional space, funds required, so devised Space to Change as a compromise, which still delivers the equipment they need.

In the Event of an Emergency

There is rarely a time when we can sit back, take a deep breath, and say, “All is right in our world.”

Lately I have been thinking more and more about what would happen if I was in a car accident. How would I know that our son would receive the best care and attention he needs?

I am his voice, and what would happen if I was unable to be that for him in that moment?

This may sound a bit crazy, but these are things we do need to think about as parents, especially parents of nonverbal and medically complex kids.

So instead of wondering and pondering I decided to write an email to our local police department.

A summary of the email is below:

Good afternoon,

I was wondering if someone could answer a few questions for me?

Our son is 4 years old, nonverbal, developmentally delayed, and medically complex. I was hoping someone could help me understand the best way to ensure he receives proper attention and care in the event of an emergency.

In the special needs community there are many parents that put magnets or stickers on their cars. Are these effective?

Do first responders even look around the car for anything that would identify a special need?

We have been told to put a sticker of some sort onto his car seat that lists his needs. Is this helpful? Is it even looked for?

Are medical ID straps attached to the seatbelt helpful? Is the best and most effective way simply a medical ID bracelet?

Off I sent my email and awaited a response.

Evening came and I received a voicemail from an officer asking if I could give him a call back.

Wow. I thought to myself, that’s great service.

A few minutes went by and then there was a knock on our door from a uniformed police officer wondering if it was a good time to talk?

He came in, sat on our couch, and we had a wonderful conversation regarding my email.

I’d like to share what I learned in the hopes it can help other parents who have the same concern as me!

1. ALL of the tools that give any information about your child are helpful.

2. Do not put any stickers on windows because they break.

3. Stickers are helpful, but should not be the only information available. What if you are hit where the sticker is and it’s illegible?

Not every officer is going to take the time to look around at each sticker right away in an emergency, since YOU are the first priority.

4. Medical ID bracelets are a must. Information such as diagnosis, emergency contacts, and specific hospital in which your child needs to be transported to are all helpful.

5. He has never seen a medical alert seat belt cuff but imagines it would be helpful; the only case it would likely not be is if first responders needed to cut your child out of their car seat in the event the car was upside down.

6. Your local police department can put your child’s information into their system.

He has asked me to email him all of the necessary information about our son so if an officer in our county were to ever pull up my name there would be a section about “child safety,” since his medical ID bracelet can only give a few lines of information.

This is the list where I can be specific; low muscle tone, tube fed, blood clotting issues….etc;

To be honest, I cannot thank our local police department enough for taking the time to come out to our house, give our boys honorary police member stickers, and help me understand how to ensure our little guy is cared for in an emergency.

I encourage you to do the same!

She is Not a Spoilt Brat

Have you ever happened to be on any food groups on social media or watched food programmes on television?

I have to say I usually avoid them as someone who generally has little time to watch TV and who struggles to cook.

However I was chatting to a friend today who had been watching TV and heard a famous chef on prime time TV talking about ‘fussy eaters’ and saying that it was all down to the parents ‘giving in.’

She felt she had to say to me as she knows the struggles I face daily with my daughter.

Just minutes later a fellow blogger posted how she was outraged having read on a huge Facebook group relating to food that a professional was advocating ‘starving’ fussy children until they gave in and ate!

I should be used to this by now but it still hurts.

People feel so open about judging my parenting and my cooking and even my mental health because I happen to have a child who has serious food aversions and struggles to eat.

It is a daily battle for me to remind myself I am not to blame!

Every parent wants to feed their child. It is fundamental to their welfare and brings us so much satisfaction to know they are happy and nourished.

My daughter was a wonderful breast feeder and despite having low birth weight she was settled, happy and slowly growing on breast milk. Then I started weaning and suddenly everything changed!

From the word go she refused solid food and eight years later we are still struggling.

We have seen paediatricians, dieticians, health visitors, mental health nurses and physiologists and we are still struggling.

If I put food in front of her and tell her ‘it is this or nothing’ she would starve.

If food touches she has a huge meltdown and stops talking and interacting. It traumatises her beyond belief.

Every single day is a struggle. People say it is my fault. Like that helps. People say she is controlling us. Like that will make her eat!

The worst ones are those who say she is a ‘spoilt brat’ when in fact she is a child with extreme anxiety and food aversion! It is heartbreaking.

We have a few foods she will eat and those are saving us from the added trauma of a feeding tube (a trauma that could result in no food or drink ever going in her mouth again).

She has just two things she will drink. Her weight is a serious worry as is her health as she walks a fine balance between being ‘well’ and ‘we may need to intervene’.

We have days she will eat and days she won’t.

Her food aversion and eating issues are complex and related to many things and not just ‘fussy eating’.

If I am to blame then why does her twin brother have no issue with food and in fact will eat anything out in front of him?

There is no history of eating disorders in my family.

My children are not fed on junk.

My daughter is not a spoilt brat and neither will I allow her to starve. That is known as abuse!

Food aversion and eating disorders are REAL. TV personalities should know better. Professionals should know better.

Ignorance is rife about this matter and it is destroying children and families everywhere.

Please stop judging!

My child is NOT a spoilt brat! She is caring, loving, gentle, beautiful and kind.

She also has food aversions and an eating disorder.

Unless you live with this please keep your ignorance to yourself. Thank you.

These are a Few of my Favourite Things

Something that evokes happy thoughts and memories for us, something that brings us welcome peace in an otherwise chaotic world…

It might be a favourite place, some favourite music, or even a favourite food (chocolate, anyone?)

Somewhere or something that is always reliable, and that in that moment helps us to forget about everything else and just enjoy it.

And while that can be the case for many of us as parents of children with additional needs or disabilities, this can be just as relevant to our children too…

Children like my son, James, who is 15 next week and who has Autism Spectrum Condition and associated learning difficulties.

Sometimes, for James, life can be overwhelming… he reaches the point where he can’t hold it all together any longer…

That’s when we go out for a, ‘Treat Trip’…

The fun starts with the journey itself. James will pick up clues about where we might be going in a number of ways… starting with where he is sat in the car!

If he is sat next to me in the front seat, ‘riding shotgun’, then that’s a clue.

As we head out on our journey, James will respond to the route we are taking. There is one turning that if we take it means we’re definitely going on a ‘Treat Trip’!

James is mostly non-verbal, but when we take that turning, he’ll smile, he’ll shudder with pleasure, and he’ll giggle with delight!

James is VERY food motivated… he eats well and has a varied diet, but he does also have his favourites, and these always need to play a part during a ‘Treat Trip’.

First stop is at a much loved farm shop near Wimborne in Dorset (shout out to Pamphill Dairy Farm Shop here!). We’ve taken James there for years and they know him well.

They know that he will enjoy browsing around the food and will probably settle on a packet of barbeque flavoured ‘Popchips’ (other potato based snacks are available).

They also know that James will add a packet to our basket, but will open another packet there and then and eat most of them before we get to the till!

“Don’t forget to ring up the packet he’s eaten…” is a phrase I have grown accustomed to saying; but rather than be difficult about it they are blissfully, wonderfully fine about it all…

Such a joy to go somewhere that, ‘gets’, Autism!

We then go for a lovely drive up through the north Dorset countryside, through a long avenue of 365 mature beech trees (one for every day of the year) by Badbury Rings, past the old Roman town of Blandford Forum and on into the countryside until we get to the next place on our ‘Treat Trip’ road trip… Zig-zag Hill.

James loves Zig-zag Hill because, as the name suggests, it’s a series of hairpin turns which, while driving safely within the speed limit, Daddy can make quite exciting by drifting around the corners.

Squeals of joy match the squeals from the tyres, and the emergence of one of James’ few words “More!” accompany this climb up the steep hill.

Situated near the top, on one of the high points of the whole region, is Compton Abbas Airfield a little grass airstrip with a lovely café/restaurant.

James loves going here to watch the little planes take off and land; they have some vintage specimens such as a Tiger Moth bi-plane and a Harvard Warbird (for the plane geeks out there!).

But what James loves most is tucking into a large slice of millionaires’ shortbread and gulping back a glass of cool lemonade!

He will savour every crumb, every drop, until it is all gone and will longingly look towards the counter again for more!

We can while away quite some time here, until it’s time to head back to the car and start the journey home again.

This is another place that James is really welcome at, and where he very much feels at home.

You’ll appreciate that having topped up James’ previously consumed Popcrisps with a large slice of millionaires’ shortbread and some lemonade, we take a different route home avoiding Zig-zag Hill in favour of a more sedate option!

Depending on the time, we might call in at Blandford Forum to one of Daddy’s favourite places, the Hall & Woodhouse “Badger” brewery shop, where James gets to practice another of his words… “Beer!”

(Don’t ask… a story for another day!)

Eventually, we arrive back home, happy and full both of good memories and cake.

‘Treat Trip’ has worked its magic again… the familiarity, the welcome, the routine, the food – always the same.

It’s a special time and one we’ll be repeating again this weekend as James reaches another half-term holiday.

A half-term that he’s found hard at times, but he will happily shed those difficult memories as we enjoy making some happier memories together on another, ‘Treat Trip’…