Sometimes I deliberately don’t want people knowing my son has autism.

I want them to see HIM and not be focused on what they think he should be like.

I am not against autism training and advocacy. In fact, we need so much more of the right type of advocacy.

We need positive autistic role models mixed with parents who are living it mixed with professionals willing to listen.

But most of all we need to stress that each autistic person is as unique as the next one.

As a parent to two autistic children and a wife of an autistic husband I have been to autism training courses and left thinking I must have been in the wrong place!

I have listened to difficulties that are supposed to be common with those on the spectrum and wondered if the diagnosis team got it wrong in my children and husband.

Yet our autism experience isn’t unique either.

So, I have come to the conclusion that it’s just better for people to get to know my child (and husband) as an individual rather than having their autism training affect what they think is best for my kids.

Here’s some examples of why:

Autism training courses mostly focus on sensory over stimulation.

A common video used is the National Autistic Society ‘too much information’ which shows a child dealing with a bombardment of sensory stimuli all at once and how it is perceived to them.

For many this is a true reflection of what life is like.

But not my son.

My son loves noise, seeks out movement and people and thrives in busy environments.

He loves nothing more than watching people, having his iPad turned up full blast and load noses like cars beeping or fire engines blaring make him flap with excitement.

My son is a sensory seeker but most autism training courses don’t mention this.

They talk about children terrified of hand dryers yet my son loves them.

They talk about people terrified of lifts, which my son also loves.

They talk about adults and children who have very restricted diets.

My son eats everything and anything!

I went to an autism friendly event this week.

I never took my autistic son as he would have hated it!

The ‘breakout’ areas were quiet, the lights were dimmed and the speakers lowered.

All the exact opposite of what my son would want, yet we are taught this is what being, ‘autism friendly’, means.

The more awareness we seem to have for autism sadly the more narrowed people’s views have become.

There is no such thing as a, ‘typically autistic’, person.

My daughter loves quiet, being alone, collecting, keeping her things special, and has a restricted diet.

My son loves noise, chewing teddies until they are thread bare, eats anything and wants TV and iPads blaring three different things simultaneously!

My husband likes to do things his own way, hates interruptions, loves silence and hates socialising.

They are all autistic!

So, if you want to help people with autism get to know them as individuals please.

Isaac would be most annoyed if you used preconceived ideas that everyone with autism hated hand dryers because he can’t get enough of them!

We are all wonderful unique individuals and that goes for autistic people too.

School…. the love and hate relationship is a true struggle for all parents.

Our daughter is three years old and has cerebral palsy, epilepsy, cortical visual impairment, and eats primarily by a g-tube.

She is globally delayed, has little fine or gross motor skills, and is in a wheelchair.

She uses a speech device that is auditory because it was the only augmentative device option given her visual impairment.

I tell you all of this, so that you can get an accurate picture of how difficult it is trying to find a daycare that you can trust and that is willing to take on all of this.

It is basically impossible.

However, we are very fortunate that she was accepted into a preschool that teaches both traditional children and special needs children of all diagnoses and spectrums.

It also incorporates all types of therapies as part of their daily activities, and the therapist trains the classroom teachers on each child’s individual needs and requirements.

My husband and I both work, so school is necessary for our daughter.

And while we are so blessed to be given this opportunity, it doesn’t make the yearly mid-August transition to a new class any easier.

This year makes the third time we have transitioned to a new class since starting at this school, but experience doesn’t seem to make the change smoother.

I’m sure other parents of children with special needs can agree, that although change can be good, it is very hard on our kiddos who crave and thrive in their daily routines.

For us, it felt like we’d just gotten used to our other set of teachers, the kids in the class, the class rules and structure and our new daily family and school schedule.

Then you blink and it is all different.

I find myself struggling most with the unknown.

Since our daughter is non-verbal, I can’t fully understand how the changes affect her.

I wonder if she misses her old teachers, does she think they abandoned her?

I wonder if she is confused by who the new people in the class are and if she realizes the room has changed and she is in a different space.

As for me, it took a good two weeks to remember not to walk into her old classroom and it is a big adjustment learning the way the new class operates. I am inexplicably relieved that our daughter doesn’t meet a stranger and so she doesn’t have separation anxiety when I leave.

But I see other parents battle this daily for weeks and sometimes months until their children adjust to the new setting.

And my heart goes out to them.

I do remind myself though, that as with most things, there are both positives and negatives.

I see a lot of good and growth that comes with these changes every year.

At some point our kiddos are ready for a new challenge (even if we parents are not).

And although our daughter loves her routine, she enjoys being around people more.

Each year, her new classroom setting gives her an opportunity to meet some new kids, and she gains four new teachers to love all over her.

A new school year also tends to bring our family hope that there are new possibilities for our daughter on the horizon.

We get to set new goals and add more people to our team to help achieve them.

These new people tend to bring different perspectives to the table, and sometimes different is what our daughter needs (someone that will look at her situation from a new angle).

But more than anything, it gives us more people to share in our daughter’s successes.

As parents of special needs children, I think tend to dread the end of a school year because we know our norm, just like our child’s norm, is about to change with the transition to a new class.

But a new school year also brings a blank canvas, and sometimes our kids need that more than we realize.

I write this letter to you, with hopes that these words will someday lift you up.

I hope to look back and find hope in my own words, even when I feel down and defeated.

You are now a whopping four years old, and curious as ever.

You are always asking your daddy and me 100 questions.

Your inquisitive mind is always running 100 miles a minute.

And you know what?

I absolutely love it.

I love when you try to teach your younger brother, Theodore, right from wrong.

I love when you tattle on your older brother, Aaden.

But lately, you have started asking questions on why you can’t walk like your brothers and friends.

You have asked, “If I eat ALL my food, will I walk like Theodore?”

You have even shared your fears about starting Pre-K and not being able to play like the other kids do.

My sweet baby boy, if I could only steals these thoughts and questions from you.

I knew these questions would come one day.

I knew you would one day notice that not every child like you has a wheelchair.

I even knew that you would notice how much harder it is for you to try walking, compared to your younger brother.

What I did not know, was how to answer these questions and inquiries.

There was never a playbook for mommy to turn to when I was stuck.

Do I be completely honest with you?

Or do I bend the truth a little, because I want you to still be hopeful and have faith?

To this day, I still don’t have all the right answers.

I don’t think I ever will.

But I take it step by step.

Day by day. Question by…question.

I tell you that even tho you may not walk like the other kids and your brothers, none of them have a cool, super fast wheelchair like you!

I tell you that God made you a little different and because of your scar on your back from Spina Bifida, you have to work just a little bit harder to stand tall or walk.

I instill hope that your friends and brothers will all see the good in you, and won’t leave you behind.

And even though somedays I feel like I am doing it all wrong, you give me little hints that maybe I am doing it right.

Like when I walked in on you explaining to a young child that your wheelchair was to help you so you wouldn’t scrape your knees all up on the floor.

So I encourage you to keep pushing, keep asking, keep educating.

We are in this together and we will both learn so many new things along the way!

I’m not sure if it’s something I’ve learned since becoming 30, or a mum, or a mum to a special needs child… or all 3.

But I realised recently that all I really want is for the world to be a better place.

I know that sounds cheesy, a bit like when pageant contestants claim that all they want is world peace, but really, wouldn’t life be cool if everyone was just a bit nicer and compassionate?

One of the biggest mental struggles I’ve faced since having Amy is why can’t the world be more accessible.

The lack of facilities for people with severe mobility impairments is utterly ridiculous.

I was in a supermarket recently with Amy and she needed a nappy change.

We got physically stuck in the door trying to get into the baby changing facilities.

I was enraged.

The baby changing table was suitable for ages 0-5, and the disabled toilets had only a little extra room and a grab rail.

Nothing at all for people like us.

I managed but it was a huge struggle.

I know that in year or so’s time this won’t be an option and our only choices will be to:

1) go home

2) never leave home

3) change her on the floor or

4) change her in the van.

It isn’t acceptable.

Shops having steps in the entrance that are not wheelchair friendly.

Get a ramp!!

Or when the disabled entrance is round the back as if people with disabilities are some sort of second class citizen… and why should they have to travel further and go out of their way?

Surely, they should get the same access as everyone else.

The other struggle I have is people’s perceptions of us.

Staring happens, it’s inevitable.

But it doesn’t make me hate it any less.

Thankfully I don’t think Amy has noticed yet as people unabashedly stare at her, then to me, then back to her… eyes starting at her splints, moving up to her tubes, then to her face and arms watching her uncontrollable movements. JUST SAY HI!!!

Or stop looking!

Depending on my mood, this can either make me feel very snappy and upset,

or, I can calmly use it as an opportunity to raise awareness and promote inclusion.

If someone is staring I will say, “Look Amy, that lady is looking at you… are you going to wave?” and try to politely bring them into the conversation.

Hopefully they leave the encounter having learned something… namely that:

1) people are people regardless of diagnosis

2) smiling and saying hi can make the world a better place

3) yes, we can see you staring, you are not discreet.

Recently as someone was gazing at her mouth agape I said, “I know right? She’s absolutely beautiful, isn’t she?” to which the person immediately stuttered and became flustered but then couldn’t agree more and then eventually went on to have a nice chat with us.

It’s amazing also how a nice gesture, like taking a little time out of your day to help someone can make such a profound impact.

Recently, I became very burnt out.

Trying to sustain the level of activity Amy expects each day through the summer holidays is truly getting to me!

A few days ago, I could hardly get out of bed.

I pleaded with Amy that we just have a calm quiet day watching TV and being happy.

She was having none of it.

She screamed and cried and eventually was sick everywhere.

It was awful.

I felt guilty for not being able to be what she needed me to be, but also a bit resentful as we’ve been busy everyday this holiday.

It was truly one of those days where anything that conceivably go wrong – it did.

It was the child being sick, it was me accidentally washing a dirty nappy, it was me smashing a cereal bowl, and it was the bag of raisins that flew out of the cupboard and poured all over the floor.

You know the type of day.

You’re kind of just waiting for a letter to come through with a huge unexpected bill, or for the iPad to die.

My mum came to the rescue!

She arrived in her car, and took Amy into town on the bus.

She was out for 3 hours.

That time enabled me to go to the doctors to sort out my anxiety medication and also to catch up on a couple of chores and, most importantly, consume a hot beverage.

My mum will probably never realise how truly grateful I was for this gesture.

I know how hard it can be pushing that heavy chair, dealing with various behavioural tantrums and so on.

Whilst I was out at the doctors, a friend had left me a little surprise by the front door (not meant to sound awful!).

As I approached the door I could see a carrier bag, and a beautiful rock with a llama painted on it.

Inside the bag was a bunch of flowers, a bubble machine (presumably for Amy but I love it equally), a light up wand (again, both big fans) and chocolate.

The reason for this?

It wasn’t my birthday, no.

It wasn’t a get well soon, or a thank you gift.

It was simply a random act of kindness to brighten my day and let me know that I’m doing a good job in life.

How incredible is that?

So, you see, the world is a better place when we do what we can to make it better for others.

Even when your day is dull and storm clouds surround your every being… there will always somewhere be that little glimmer of sunshine peeping through urging you to carry on.

It helps me forget for a moment how much is wrong with the world – lack of access, people parking in disabled bays when they shouldn’t, people judging me or my child and so on.

It reminds me that there are still good people in the world that care and don’t want your perception of the world to be shattered.

Those moments come in many different forms.

It’s your other half giving you a hug when he knows you need it.

It’s your dad saying, “Hey, let me push that chair and give you a break”, it’s even just a neighbour smiling and saying good morning.

It’s your child for the first time in weeks going to bed without a fuss… smiling at you, and rolling off into a gentle slumber, happy with her day.

I wish I could make the world a much better place for Amy.

In my own little ways, I am trying every day by trying to get better and be the mum she needs me to be.

Today blogging is tougher than usual.

So far, I’ve part written three posts, discarding all of them in the end.

I feel like I’ve run out of words.

I have the beginnings of a migraine, have a mountain of work to do and time is dragging.

And I’m tired.

All the above are signs of someone who hasn’t had enough sleep and who is just plain out of reserves.

SN parents reading this will recognise that those reserves were used up years ago, and decent sleep hasn’t been had in months if not years.

Today is one of those days when things are just harder than usual.

This week, my brother and his partner have taken their children away camping for a week.

The kids were bubbling over with excitement on Saturday as they piled into the car waiting to leave.

I love those kids, but with all the building work going on and additional stress that brings with it, I’m just a little more sensitive than usual.

Hearing my 3-year-old nephew chatting away excitedly to his toys made me smile but then turn away quickly so the tears wouldn’t be noticed.

At 3 years old, he has already far overtaken my boy developmentally.

At 7 years old my son is becoming too heavy to lift comfortably.

His Dad can do so, but even he is starting to struggle.

All children reach a size where their parents are unable to lift them easily, it’s just that for most of the time those children are able to stand and walk on their own.

For us, the realisation that our boy is getting so tall is a double edged sword – it’s something we didn’t dare hope for when he was a baby, yet it’s a reminder that while he continues to grow normally, his abilities are unable to keep up.

I thought I’d reached a level of acceptance where seeing developmentally normal, healthy children wouldn’t break my heart quite so much anymore.

People tend to try and make you feel better by reminding you of how wonderful YOUR child is, and how much they have achieved despite prognoses, disabilities, illness… believe me, my grief at what my son has and will miss out on in no way means I love him any less.

I love that child fiercely and celebrate every achievement no matter how small, because it has been hard won.

But some days are just harder than others, and there is nothing wrong with that.

Ever since my son Oliver showed interest in learning how to walk and an understanding that it would take a lot more effort and tries to accomplish it, I wanted more for him.

I wanted the best of the best bracing, therapeutic equipment, and anything I could assemble and DIY at home for him to be able to work at this dream.

We have always had AFO bracing for him, which cover the ankles and feet.

They allow extra support where he is weak, ultimately preventing his ankles from giving out and keeping his feet upright and straight when standing.

Because he was born with club feet and hip dysplasia, without bracing his legs curve in at a slight angle.

He would almost be standing on the top of his feet, without the help of these orthotics.

Due to his paralysis, he also experiences gait problems.

Oliver has the most amazing upper body strength you have ever seen in a four year old, but he seems to almost, “fold in half”, at the torso area.

Due to this, I have always pushed our doctors and therapist to look into HKAFO bracing, or anything similar to them.

For this type of bracing, it covers the hips, knees, ankles and feet just like his AFO braces would do.

The awesome thing about these tho, is that they keep his torso upright when walking not allowing him to do this folding in half.

It allows him to stand tall!

With Oliver now hitting four years of age, we are hearing more from him about being able to walk and stand like his siblings.

After months and months of fighting and finally waiting for them to arrive, we have received the bracing equipment!

They are bulky, new, and scary to Oliver, but with time and practice he has warmed up to them.

Nothing could hold back his smile and giggles when he saw himself next to his younger brother Theodore, standing a couple inches over his head.

He finally felt what it was like to stand up, on his own even!

My sweet boy wanted to just keep the braces on and stand while doing even the simplest things like watching TV.

All those months of research and pushing paid off just to see him smile.

It was such a weird feeling and sight to see my son stand on his own, and I very much look forward to see him turn that in to walking on his own!

Doesn’t equipment just take over your whole house?

When we first moved into our little bungalow a year ago I was staggered by how much extra space we would have.

Once Amy’s equipment all found a home I was left wondering where all of our other stuff was going to live!

I am also sure that Velcro straps, fastenings and any other equipment attachments can breed.

We seem to have drawers full of it all.

I’m too scared to discard any of it in case at some point it becomes necessary!

I remember, three years ago, attending an event where they showcase and demonstrate various pieces of disability equipment.

There were wheelchair access vehicles, bath lifts, different types of wheelchairs and all sorts.

Back then, Amy was still just a baby and I hadn’t yet seen just how much of this equipment would end up becoming relevant to us.

At the time, none of this stuff was relevant, we were more just excited to visit the Firefly stall – even though we already have all of their stuff!

The main thing I remembered seeing were these huge beds with really high sides and padded panels all the way round.

It sort of looked like a padded cell or a child cage in my mind.

I recall thinking to myself, “I hope we never need one of those”.

Fast forward 3 years and here we are.

We have one of, “those”, beds.

I’m not sure what my problem with it is.

After all our house looks a bit like an equipment warehouse.

A lot of the equipment does look “medical” and unfriendly.

Where possible our team have always endeavoured to get us nice colourful things but sometimes there is no avoiding the fact that all of this kind of sucks.

I like to joke that the bed looks a bit like a vivarium or fish tank…

I often use my humour as a coping mechanism to hide the fact that actually this is not the bed I would have chosen in a million years.

I had always envisioned her first bed being a really cool looking bunk bed, or one of those beds shaped like a racing car, you know, something like that that a child’s friend would be really jealous of and you’d feel like, “The cool mum”, for letting them get something so daft and impractical.

Prior to having this bed, we had one with far lower sides that went up and down.

But as Amy has grown, her involuntary movements are becoming even stronger and more damaging.

She was bashing her limbs on the sides of the bed and ending up covered in bruises; and whilst she’s non-mobile there was still always the fear that she would somehow fall out of the bed one day.

So, I admitted defeat and called in our OT to come and assess her for something safer.

Each piece of equipment being hauled or wheeled into our home is a further reminder of the severity of Amy’s postural needs.

I know it’s all necessary and I am grateful that we have it, but I do sort of resent it.

I more resent that they require regular maintenance and service checks and that a lot of the equipment also needs servicing or repairing/replacing.

I have been delaying for months now getting some parts on her wheelchair swapped over.

I know it desperately needs doing, but I am only just over the trauma of the old bed going and arranging for the new one to be built!

The more I see the bed the more I see its merits – it is kind of like a den… and like many children, I used to love building a good den, and this one is the ultimate.

At night, with all of the sensory lights on, it seems quite magical staring up at the ceiling, safe in your little den.

I also like how it is the one place I can place her down unstrapped and know that she won’t come to any great harm (except for getting stuck sideways or at the end of the bed… or pulling her hair. She often does all three at once).

Changing the sheets is much harder, and keeping opening and closing all of the doors is hassle.

I foresee this being her bed for a very long time and I am trying my hardest to be happy about it.

We now have: a standing frame, a shower chair/trolley, a wheelchair, a postural support chair, 2 physio benches, an Upsee, a physio wedge, a GoTo seat, a Splashy, 2 giant physio mats, a sleep system set, a squiggles set, and that’s just the stuff I remember from the top of my head!

Of all of these things the bed is the one thing I struggle with.

Other than the wheelchair my favourite bit of equipment thus far is the GoTo seat.

We’ve used it for so much over the years and instead of being part of her physio routine or just, “Another piece of equipment”, it has really helped us when shopping, or at the park, or even just a dinner table.

It’s strange how one thing can make you feel grief at how different things are and how another can feel so empowering and useful.

What’s your favourite and least favourite piece of equipment?

How do you store all of yours?

A lot of our feeding tube supplies fit nicely under the new bed – which is another bonus!