It’s not *quite* how we imagined it would be, all those years ago, when you were still waiting to be born… we didn’t imagine you sitting in a lime green, fancy-pants wheelchair for example.

Or that instead of me driving you in, you’d be taken in by a wonderful family-run taxi firm, in their adapted taxi.

And I’ll be honest, that reality is cutting me in two right now but seeing you ready to go off on your next adventure I am also so, so proud of you.  Of the wonderful, loving, gentle child you’ve become.

Sweetheart, you are going to have so much fun at school!

You’ve already met your new teachers, as you had a brief few weeks there before the summer holidays, and I know that they adore you almost as much as we do.

I know you’ll be safe there, and happy.

But my darling, I am going to miss you so very much… while you’re having fun painting, swimming and out exploring with your new friends in the school garden, I’ll be sitting at work wondering how you’re getting on, and counting down the hours until I can leave and come home to see you.

Your Daddy and I don’t see your disabilities, we see you.

And so do your new teachers and friends.

And while I cannot promise that I won’t cry when you leave for school (although I’ll be careful not to let you see) I can promise that when you get home we’ll be there waiting for you.

Things may not be how we imagined or expected, but they are none the worse for that.

On the contrary, we are better people for it, and that my love, is all thanks to you. x

I was folding Oscar’s wheelchair down and lifting it into the car.

That is when I heard the shout.

It was one of the teaching assistants from Oscar’s school.

‘I know,’ I said, ‘but it is the only way I can get it into the car.’

Oscar’s wheelchair is like a big pram but it is not a pram, it is a wheelchair (as one of the other bloggers wrote about).

It is also very, very heavy.

I don’t actually know how heavy exactly but it is heavy.

I find when I am trying to put the wheelchair into the boot of the car I am twisting myself as well as leaning back to try and lift it better.

I know eventually, I may end up hurting myself.

My legs are already covered in bruises from just putting the chair up and down!

The fact that I am not very tall and have no muscles whatsoever does not really help my cause.

Her words made me realise though how much I do not think about my poor back (because it does ache) when I am lifting.

When I am lifting Oscar into the car to put him in his car seat, I am so busy trying to make sure he is not twisting, that I don’t bang his head on the roof of the car (because, I have done that a few times, bad mummy) and that I do not hurt him and he is comfortable.

I am not paying any attention to the fact that I am bent over, twisted, while half of me is in the car and the other half isn’t, if that makes any sense!

The same goes though for whenever I am lifting and carrying Oscar.

I am so busy making sure he is alright that I am not making sure that I am alright as well.

I am sure I am not alone with this.

But, if I hurt my back, then who will look after Oscar?

Hubby works full-time to keep a roof over our heads and I am Oscar’s main carer.

We cannot afford for me to have a bad back and be laid up in bed.

I need to start caring a little more for my poor back and thinking more about myself when lifting and carrying Oscar and his equipment.

Or lifting and carrying anything for that matter.

Please take some time to think about your own situation and how it affects you physically and see if there are any changes you can make.

Even speak to your child’s physio to see if they have any suggestions for you.

Who will look after our children, if we do not look after ourselves?

Mind your backs everyone!

With my husband and my daughter, it’s clear to see the heart-holding is mutual.

My daughter is a spunky, happy, loving four year old.

Although she is small, she has a joyful personality that is larger than life.

She also happens to have very special needs.

There are mountainous hurdles that she must overcome every day.

Her Daddy is a Triathlete that pushes his body to the limits…she has his same dauntlessness and tenacity.

She can be sitting perfectly still and content playing her little piano, until her Daddy walks into the room.

Her happiness then can’t be contained!

“Da-Da” is the only word she speaks, and she says it with excitement, very loudly and deliberately, when he’s in view.

When he is sitting on the floor with her, he is her jungle gym.

I watch them closely…she reaches up and touches his face.

They look at each other, having a whole conversation without uttering a word.

He calls her a silly name and she erupts in belly-shaking, breathtaking laughter.

The interaction between them is beautiful and I never grow tired of watching it.

It is an ongoing joke (truth) in our house…she loves her Daddy best!

I will try my hardest to earn a smile or a giggle; he elicits them with ease, effortlessly!

All he has to do is look at her or call her name and she goes all starry-eyed.

It is obvious how tightly they hold each other’s hearts.

There are often times that my heart aches for him and for the typical father/daughter moments that disability will take away from them.

The traditional father/daughter dance, planning for college, buying her first car and walking her down the aisle are all milestones of life that are heartbreakingly unfeasible.

Those topics are ones we don’t talk about often.

They are a part of reality that we can’t dwell on.

They’re acknowledged and pushed out of our minds for now.

Our thoughts never tarry there.

Seeing this duo together, I witness wonderful moments unfolding before me.

And I look forward to all those ahead that they will experience together…moments that fathers of typical daughters could truly never understand or fully appreciate.

She will hold his hand a lot longer…he will sing her lullabies and rock her to sleep longer…she will reach her arms up to him for snuggles and cuddles longer….he will make her laugh until her face is bright red, with a single look, longer.

He will remain her undeniable hero and her fierce protector for much longer.

What society deems as imperfection, makes her all the more perfect to her Daddy.

Theirs is truly a love like no other.

Every day I am lucky to watch her with the one that makes her laugh.

The conversation that follows feels like a punch to the stomach, winding you.

Emotions all over the place.

Replacing the receiver, hearing the words over in your head.

It was good news today, for once.

Our application for continuing healthcare support was provisionally agreed at a meeting this morning.

Our lovely community nurse who’s been with us since Sam was 14 weeks old called as soon as she heard.

Good news.

So, why can I not stop crying?!

It’s very simple.

It’s because I am sharply reminded that while I see him as nothing more than a wonderful, perfect child, the reality is that he is a very poor one.

Uncontrolled epilepsy is deemed to be when someone has more than a couple of seizures in a month; Sam has around 10 daily.

We’ve just gotten so used to coping, to managing the situation, that it’s normal to us and when reality bites it doesn’t just nip. It takes chunks out of us.

I’m so relieved that we’ll finally get the support we’ve desperately needed for so long, and heartbroken that we need it at all.

I’m winded by the tidal wave of adrenaline surging through my body currently, my legs are shaky, and I can’t think straight.

All I want to do is get in my car and drive as fast as I can home to scoop my child into my arms and tell him just how much I love him.

So he’ll never, ever be in any doubt that he is my world.

That I don’t love him in spite of his difficulties, but that they make me love him so much more than I ever imagined possible because I see his strength and love of life in the face of all his battles.

I see his courage.

I could do with a good dose of that right now.

“Does he have a special talent?”

If I had a pound for every time I had heard those statements and questions. Well.. I think I’d be pretty rich by now.

What people don’t understand is that autism is a HUGE spectrum disorder.

The range between mild, severe and all the in-between is massive.

The ‘clever’ people they talk about, with ‘special talents’ have what you’d call ‘high functioning’ autism.

And people with this are usually only really good at something in particular because they struggle in other areas.

So, instead of struggling to do the thing they aren’t so good at, their brains automatically focus on the thing they are good at, therefore they just get better and better at said subject.

I was recently out shopping with Aj when a lady asked and started quizzing me about my son’s autism.

She told me how her sister’s son had autism, and in her words, “He’s what you call a high achiever, though.”

Wow, well, that was a bit of a kick in the gut.

She probably didn’t mean to come across as being so rude (well at least I hope not!) but what she said really hurt my feelings.

I tried to explain that we’ve been told our son will never be the ‘high achiever’, but then she just shrugged it off.

That’s why I wish people knew more about autism.

Having the knowledge would prevent (well hopefully) hurtful, thoughtless comments like those.

When you see documentaries on the TV or stories on social media about autism, it’s more or less always about individuals who are high functioning and have, ‘special talents’.

I think this gives the wrong perception of autism as a whole, and people just seem to forget how much it can actually affect someone’s life when your on the severe end of the scale.

Obviously, I understand having any form of autism has an effect on your life, severe or not..

I just wish it was always the ‘success’ stories, for want of a better word, that get publicised!

After all.. Awareness is acceptance!

Physical, occupational and speech therapy cheers you and your child on each week. You believe that there is an end in sight.

Therapy – sure we’ll get through therapy and ‘fix’ all we need to and we’ll be done forever!

After the first year is when you might start to grow a bit weary.

Adaptive equipment discussions start to happen… standers, wheelchairs, gait trainers.

Your mind swirls with uncertainty about what all this means for your child’s future.

Yet you trudge on piling on more and more therapies with the hopes that all of it will make a significant difference.

You might even have a therapist or two who detects the start of your exhaustion trudging to therapy after therapy with your child and pulls you quietly aside to confide in you that there will come a point where therapy will no longer be needed… not because your child won’t benefit from it, but because they’ll reach a time when they feel your child doesn’t have the potential to make any further gains.

This inevitably causes a sharp pain to hit right in the center of your heart, and make you question if your ears really heard what you were just told.

In defiance against the odds set before you that more can’t be done you seek out even more therapies.

This time out of pocket expensive therapies that are deemed “alternative” and something that your insurance company would never dream of considering.

Yet your willingness to push through forces you to create online fundraising accounts, beg any foundation and charity that you can find by doing extensive online searches and consulting with other special needs families in the community.

Before you know it you’ve lined up a therapy for each day of the week and on some days you’re doubling up on therapies.

You throw in a handful of, “intensive therapies”, that are longer and more time consuming.

You’re now travelling sometimes out of state even for camps and therapy sessions.

Until one morning you wake up and hit that special needs parenting brick wall.

The wall that wall that says I can do no more.

Maybe financially you’ve come to a dead end, that happens more times than not.

Maybe you feel like you are short-changing your typical child by devoting every waking moment to improving the life of the child that depends upon you for all daily living needs.

Or maybe you just realize that your battery is low and you are just plain tired.

And so you have this monumental moment of saying you’re done with therapy.

Now, this isn’t to be confused with permanently giving up on your child’s therapy.

This is just a point where you say – I want to have a normal summer with normal activities with zero therapy.

A time for you to bond as a family, go to the park, take walks – a big stretch… take a well-deserved family vacation – the freedom to just exist without all these extra appointments.

You might twinge in the beginning with that little voice in the back of your head that says, my child won’t get better unless we continue on at this pace – the guilt factor that gives us that fierce parental drive to keep going the distance at all costs – even if that is our mental sanity and ignoring all signs of physical exhaustion.

But then the other voice says it’s going to be okay, you’ve gained so much knowledge through the years that you can do a lot of therapy yourself for the time being while you take a little break.

And it’s important to recognize that if you are feeling you need a break – your child is likely too.

We’re balancing a fine line of therapies with offering our children a real childhood at the same time.

Give yourself permission to take a break.

Therapy will still be waiting for you to return.

And you and your child will be so much more rested and refreshed to go at it again.

Be gentle with yourself and the decisions that you feel most comfortable with making.

Perfectly good clothing and even toys often get tossed into the trash can when they are outgrown by the children who once loved them.

When an appliance develops a minor glitch, rather than calling a repairman to fix it, off to the dump it goes.

So many other things in our society are also disposable.

Most people, myself included, never think twice about using disposable diapers and dispsable wipes.

Who’d rather spend their time getting down and dirty wiping and diapering little poopy butts with washable cloth diapers and cloth wipes?

We use mops with disposable “wipes” on them to clean our floors with and we wipe down our counter tops and toilet bowls with disposable disinfectant wipes!

We eat off of paper plates, drink out of paper cups, and eat our food with plastic forks and spoons! Even contact lenses are disposable these days!

Now don’t get me wrong, I really don’t think that throwing things away when they’re broken and using disposable items to make our lives easier are all bad things to do.

However, when that throwaway attitude begins to affect how the general population feels about certain types of people, it can become pure evil!

The belief by some that human lives are also disposable is beyond frightening to me.

I was recently devastated when a close friend of mine suggested that I place my daughter, Bethany, into an institution for the disabled so I could have a better life!!!

I was flabbergasted that she would think that way about my beloved and precious daughter.

Her callous attitude made it’s despicable debut when I broke down crying one day while she was visiting.

Bethany’s behavior had been quite upsetting that day.

To my bewildered astonishment, rather than supporting and encouraging me to continue in my attempts to understand and eliminate Bethany’s behavior triggers, she told me to toss her out like a bag of trash so that I could have a better life!!

I cannot find the words to express just how heartbroken and crushed I was by this friend’s cold and heartless statement.

If you are the parent of a child with disabilities who have placed their child in a living arrangement outside the family home please don’t take my reaction to my friend’s response the wrong way; I personally know several children who are thriving and much happier living away from the family home.

I’m fairly certain that the majority of parents who place their child outside of the home did not come to that decision lightly or do so because they felt that caring for their child was an inconvenience.

Sometimes good and loving parents have no other options and for the welfare of the child, parents make the agonizing decision to place their child into a living situation outside the family home.

Sometimes parents make such a decision for the safety of their child or the for the safety of other family members. Sometimes when our disabled children become young adults, they want to experience growing up, leaving home, and living as independently as possible just like everybody else their age does.

And of course, as parents of children with special needs grow older we need to get them ready them for a life without us and that may involve transitioning them into other housing options.

If you are the loving parent of a child with disabilities who has made the very difficult decision to place your child into a living situation outside yor family home.

Please do not be offended by my words.

My criticism is not meant for you.

My criticism lies wth the horrifying attitude that if a child’s disability causes an inconvenience, is annoying, or makes life difficult in any way then by all means just get rid of him or her!

This growing and disturbingly inhumane belief that a person with disabilities is as disposable as a broken toy or a dirty diaper makes my blood boil and also terrifies me.

It was truly terrifying.

Since Sam was born, I’ve been there.

I’ve held him through as many seizures as humanly possible, for blood tests, lumbar punctures, bumps and scrapes when he’s had a seizure and bitten through his lip or banged his head/knee/arm during the throes of one of the wretched things.

While not his sole parent and sole carer, due to work etc it has more often than not fallen to me to be nurse, therapist, dietitian, and advocate.

So, handing over the reins to someone else was… difficult.

And his wonderful carer totally got it.

I already like this lady and the other lady who comes to care for him.

We’ve only met once, yesterday afternoon, when they popped over to say, hi, introduce themselves and find out a bit about this special little man they’re going to be looking after while Mum and Dad are at work.

Sam likes them too.

They have a warmth about them, and a manner that was so gentle that even Sam couldn’t resist giving a little smile.

For parents of neuro-typical kids, it’s tough letting your child go with someone else, think the first day at school, or the first time they’ve gone out with a friends family….

But for us, the parents of non-neurotypical kids, there’s the added need to explain ALL about our kids.

Their needs, seizures, movements, how they communicate, how they can let you know that they like/dislike something/are in pain.

It’s scary leaving someone alone with our child knowing that the child in question may well have a severe seizure and stop breathing, or may choke on vomit during/after a seizure and require emergency medical attention.

Although we *know* these are trained carers and will take everything he can throw at them in their stride, it is hard to relinquish that caring role and allow someone else to take the strain, albeit just for a few hours.

I find myself hanging around, not quite ready to leave my boy…

I’ve almost become dependent on HIM, not the other way round!

However, Daddy is now home and all is well…

Sam behaved like a gentleman and didn’t have any major seizures, and by all accounts has had a fantastic morning. I’m thrilled that we’ve got this support, allowing us to be parents not just carers.

We get some financial help with covering the cost of the service from social care through direct payments but they are nowhere near sufficient to meet the costs fully.

The sad thing for us is that as Sam is only 4, our direct payments are deemed to be for carers respite, NOT childcare.

And yet, our boy cannot access ordinary, mainstream childcare and is too young for special needs holiday clubs.

For us, it’s a price worth paying, but many others don’t have that choice… surely its about time childcare for SN children was given the priority it so desperately needs?

Sam and I certainly think it is x