It’s a Saturday morning and an excited Isla waits patiently for a black van to pull into our driveway.

She lets out an excited squeal and rushes to take her seat in the van next to her best friend Samantha.

They soon set off on their morning adventure with their carers Maddie and Ruby.

These outings have become common place each weekend and are a great way for the girls to get a little independence.

They are quickly progressing towards becoming teenagers so it’s nice for them to experience a little of what their neuro-typical peers might be doing at this stage.

Hanging out with their mates without their parents around.

Each week the girls discover somewhere new such as the museum, tenpin bowling and recently a trip to Devonport.

Their outings had to be reined in a little with the latest Covid outbreak here in New Zealand.

They avoided  trips on public transport for a while as the girls wouldn’t tolerate masks.

There have been lots of picnics and fish and chips on the beach but for our girls the trip in the van would have been just as exciting as the destination.

Samantha and Isla have been best friends since Isla joined the satellite class at the local primary school when she was 5.

They have a special connection and even though Samantha is non verbal, they have no problems communicating.

They share the same sense of humour and they just love being together which is helped by Sammy’s easy going nature.

Isla struggles a little with friendships and we tend to avoid playdates and having to deal with the inevitable conflict that arises due to Isla’s rigid ways.

Isla finds friendships a little easier with adults as the rules are more defined and there is more flexibility.

When asking Isla what she loves about her trips out she says “the treats of course”!!! but also adds the laughing.

She says that she loves Sammy because she knows her and she’s always by her side when she needs her.

We have been lucky to have had some lovely young ladies help us take care of Isla.

They all bring something different and teach Isla new skills. It also gives us some respite for a few hours per week

As I sit here and write this post about siblings I look back on the last 18 months with immense pride.

It wasn’t like this at the start, the day we got told both girls had a life changing brain injury my first thought went to my daughter Grace, how life was about to change and take a different path without any control.

What would she think to all the equipment, how would the future look, what will her bond be like with them?

Naively I thought she would see the differences. I was numb with worry, sleepless nights thinking about what the future might hold.

We brought the girls home with NG tubes, Grace wanted one too. The first lot of adaptive seating arrived, Grace wanted a chair with wheels, the GoTo Seats arrived, she expected one too.

The Playpak arrived, Grace loved the colours and had a fight to sit in it to watch TV, came home with the first set of AFO’s you guessed it she wanted a pair, as the standers arrived she asked where was her stander!

It was actually the polar opposite of what I initially thought, she cannot see the differences like an adult would she is a pre-schooler; she sees the world with innocence, wakes up talking about rainbows and Peppa pig.

She doesn’t worry they aren’t walking yet or stealing her toys as long as they giggle at her singing and watch her dance to Frozen, she is still learning to share snacks equally so Sienna & Scarlett are getting better at grabbing their fair share.

There is no special treatment in the house, everyone is equal.

I wish I knew what I do now, that we never needed to worry. Live in the moment and enjoy the natural sibling bond.

If only I knew we would still joke about a smelly nappy, splash each other in the bath, play tickle monster and blow raspberries on milk filled bellies right up to bedtime.

No medical professional could diagnose or prescribe any medication for these precious moments.

Sure we will have our different phases in life and periods of change in family dynamic, but that’s no different to any typical family, we can overcome anything if we all make time for each other and ourselves.

It’s a question that’s on the minds of many parents of kids with special needs; “When will my child know they’re different?”

We worry about if and when they’ll notice, what they’ll say, and most importantly, how we’ll handle it.

Our moment came recently when my youngest son, Chance, randomly stated, “I have a trach. I’m different.”

Chance is almost ten years old and has had his tracheostomy tube since he was two days old.

He doesn’t know life without it.

Although he’s pointed out in the past that he has a trach (to us, to his teachers, to strangers in the waiting room at the doctor’s office), this was the first time he vocalized understanding that it made him different from other people.

I asked him what he thought that meant, and he just kind of shrugged. I explained that being different is cool and that he has something very few people have.

I have way more experience explaining his differences to other kids and emphasizing that they probably have more similarities and things in common than they do differences.

Still, this time there was no one else to compare to.

He didn’t seem upset about the fact that he is the only kid he knows with a trach, and I braced myself before I  asked him if anyone has ever said something unkind about it.

Realistically I know the possibility of him being bullied at some point about his disability is high, but it still stings to hear.

Luckily, he couldn’t seem to remember anything significant.

It’s distressing to parents of kids like mine to hear of people making fun of their differences because we just want so badly for everyone else to see what we do and for them to be accepted for who they are.

We don’t want our kids to be known as or referred to as “the kid with the trach,” “the kid with the feeding tube” or “the kid with the wheelchair” because even though those things are part of who they are, they’re not all that they are.

The first 18 months of our lives with the twins Sienna and Scarlett has been a period of adjustment.

I feel that’s a slight understatement, let me rephrase that, it has been more like jumping on the fastest and turbulent ride on a theme park, then occasionally jumping on the carousel going round and round and getting nowhere, and every month going to visit the physio at the local hospital, which is a bit like a clinical soft play of crash mats, peanut balls and wedges; whilst there they mention some new equipment.

I am instantly intrigued by the physio telling me about this new world of equipment that exists in our local children’s loan store, like a locked up toy store for local SEN families.

The day has finally arrived our first of many ‘new equipment day’, a brand new postural support system for daytime play and activities to help both girls, it comes in a new packaging each piece so delicately and cleverly designed to support the girls comfortably  all day.

I knew it had been on order for a month, I googled it, shown my family excitedly, made space in our front room toy collection ready for this to come.

As I set it up that day as shown via the physio I felt so odd, all these raw emotions come flying around in my head, this is our new normal get used to it, this might help them, this might make no odds at all, this might be the start of a beautiful world was not my first thought.

But it is exactly what I think now.

As each new piece of adaptive equipment arrives in the house I am now excited and stay excited for weeks.

What new equipment does is open up a world of opportunity, a world that without this equipment would otherwise be inaccessible.

They can sit upright to see the world like the rest of us but we can rest easy they have the right amount of support, each piece of equipment serving a different purpose.

We love every new piece of adaptive equipment like it’s a new fairground ride coming to the theme park we call our home.

Funny how a year can change.

This weekend we walked into a restaurant for a Sunday roast, armed with two GoTo Seats asking for a table of 5 to dine out with our little family.

Clipped our seats onto any of the dining chairs, we carried on like any other family. Carrots were chucked on the floor, gravy smeared upon their cheeks, all 3 girls impatient for ice cream. We rely on the adaptive equipment to make simple everyday things possible!

The adjustment gets easier and our perspective changed once we realised the freedom it gives our girls, new equipment day is now like Christmas come early.

Ethan was diagnosed with his genetic disorder in 2012. I remember the day like it was yesterday.

The diagnosis came in a letter. As I read that they had found a change in the gene I immediately wanted to know more.

So I did what we do nowadays and went onto Google!

When I typed in ARX I was expecting a list of signs and symptoms to come up. Something that would describe my child.

I wanted to be able to relate to something that would give me some idea of what the future would hold for Ethan.

I waited for the results to pop up. A couple popped up. One was a coding site which was all genetic codes, I couldn’t understand any of it.

The 2nd one was a page about the genetic disorder but had one paragraph which described the genetic make up.

That was it. There was nothing that gave me anything to relate to.

I was left with hundreds of questions and a date for 2 months time with the geneticist.

I was desperate to have more, to find out if my 2 year old child would ever be able to do anything.

So a year later I decided to start writing and documenting our journey.

I didn’t want others with the same diagnosis to go through what I had.

I had searched and waited for 2 years for some kind of answer to explain Ethans development delay and his seizures, then I received a letter with the answer but no actual answers.

Writing has allowed me to be able to express what we go through, things that help along the way and it gives me an emotional outlet as well.

It has given me so much support and a way to digest the fullness of having a disabled child.

Writing has brought me lots of support from people who are in similar positions.

It has also allowed friendships with those whose children have the same condition as Ethan.

I’m glad I started writing because it’s helped me and others as well.

Recently Quinn has begun speaking for Sawyer.

She will say “He says yes.” or “He says no.” Sawyer is non verbal but is VERY good and his non verbal communication.

She can read his facial expressions. He does have an eye gaze but he’s learning to use it still so we often lean on the communication that he can use most consistently.

It’s very sweet to see her interacting with him in the best way she knows how.

He is very different than her. He can’t speak to her but he has feelings like her and I know she will some day be fiercely protective.

There are many times that Quinn sacrifices her happiness or immediate gratification because she has a brother with special needs.

Her life is truly shaped around Sawyer and many times we have to say no to things because of Sawyer.

I am not sure what the best solution is, do we tell her its because of Sawyer or to we make something up? We often times choose to be honest and explain why we can’t go outside or participate in something.

Quinn does not seem to show her frustrations toward her brother. She accepts them.

I believe whole heartedly this is because not only is she a compassionate kid but also we strive to make up for the sacrifices she makes.

We decide to do something fun inside the house if we can’t go outside.

One parent will take her for a special outing if for some reason we can’t go as a family.

She was allowed more screen time and special field trips and treats for being so good during all of his therapy appointments.

It’s a tough job as a parent to balance and it is even tougher on Quinn.

The key to keeping things running smoothly is treating each of the kids as individuals, providing them things to do separately and together and teaching empathy and understanding.

It’s not often that Sawyer has to sacrifice for Quinn but he does have to sacrifice for himself and although this isn’t something that Quinn can understand now, she will in the future.

Covid 19 has affected us in many ways, the biggest being that the 3-4 times weekly therapy sessions that we relied to keep Annabelle building muscle strength and to allow her muscles to be stretched and active just vanished overnight.

Pre Covid Annabelle has two conductive education sessions and a physiotherapy session each week (some weeks NHS and some weeks private) and an aquatic therapy session fortnightly.

We also did daily therapy at home.

When the country shut down, we assumed it would just be for a couple of weeks.

We thought a break would do her good and we would continue working with her at home.

We soon realised it wasn’t going to be that easy.

We both had full time jobs to maintain, I was working from home and my husband Simon was still having to go to work every day so we had to stagger our hours so one of us could work whilst the other looked after and entertained two children who were no longer able to attend nursery and on top of this we had to fit in therapy each day.

We had no one around to support us. We had no option other than to find a way to make it work as best as we could.

For a while we worried that we weren’t fitting in enough therapy, but, the world was against us so we had to accept we couldn’t work miracles and wouldn’t be able to do as much as we wanted because there simply wasn’t enough hours in the day.

We changed our approach and just did what we were able which was generally standing frame activities and hidden therapy through play which we were able to sneak in several times each day.

We are now coming out the other side.

After 6 months of no hands on contact from our professional team, we are now able to access hands on conductive education session,  aquatic therapy and NHS physio again and have continue doing a second conductive education session via Zoom.

Whilst Annabelle has had a lot of gains over the 6 months she has also deteriorated in other areas.

As a therapy parent it is very easy to focus on the therapy your child enjoys rather than those parts which are harder and less enjoyable.

Getting a balance somewhere between is not easy.

Having hands on therapy sessions helps with this as there is additional equipment available which means more variety and different therapy exercises from those we do at home which helps give Annabelle a full stretch and works on all those muscles that she has less desire to work on home.

Being in the pool is so important for Annabelle, 6 months without this, led to her body becoming tighter by the day and harder to stretch.

We are hoping that therapy isn’t restricted again any time soon, but as there is no guarantee we are making the most of every session available to us and trying to reduce the tightness throughout Annabelle’s body that creep in during lockdown!

Sadly I am used to it.

But I shouldn’t need to be.

People see me hook arms with a boy who is just a centimetre smaller than me and look with wide eyes.

He doesn’t look any different to any other almost 12 year old so why do I treat him like a toddler? Maybe I am one of those overprotective mums?

They watch as he climbs up stairs less than half his height and I see the judgement that he’s on a slide meant for pre school children. Some even say something, rarely directly to me and mostly to people nearby.

‘Kids that age should be on the bigger stuff. Shocking!’

‘There’s an age restriction for a reason. Not that some people read it!’

I just smile.

Had I brought my son into the same place in a wheelchair they wouldn’t be saying this.

If he was visibly disabled, missing a limb, using a walker or even on crutches these same people would likely be sympathetic, inclusive and understanding.

How do I know this? Well last year my son was in a wheelchair, had all his hair shaved off and had a very noticeable large scar across his head. When he was doing then exactly what he does now other parents smiled at us, spoke to us and even asked if he was ok.

When his brain tumour was seen people understood he was disabled but now they can’t see his disabilities it’s like they no longer exist.

Does gravity still exist even if you can’t see it?

Do you still believe in oxygen even though you can’t see it around you?

Just because some disabilities are invisible doesn’t mean they don’t exist.

You shouldn’t need to be able to see that my son is non verbal.

You shouldn’t need to see that he has severe learning disabilities.

You shouldn’t need to know he’s epileptic.

I shouldn’t need to explain that he’s autistic.

I often wonder if his conditions were visible would I still get the eye rolls, the tuts and the comments? Would I still have to justify why I use a disabled bathroom with him? Would you still question why he’s on the smaller slide for his own safety?

I get strange looks when I am out with my son. Sadly I am used to it because he’s one of the one in ten people who live with invisible disabilities every single day.

I shouldn’t need to get used to those looks and comments, neither should my son. But until society realises there can be so much more than what you see nothing will change.

Until people realise you don’t need to see something to believe it exists those comments sadly won’t be the last we will hear.

And we won’t be alone in hearing them either.