Too young to understand,

Full of love to give,

Giving mummy a helping hand,

A lovely way to live.

 

Recognising the unusual,

Taking it all in your stride,

Learning is always mutual,

Life is a topsy turvy ride.

 

Ready with cuddles and kisses,

Your heart brimming with love,

Always sending your twin best wishes,

Your bond is like something angelic from above.

 

First to comfort and hold hands,

Never wanting to leave their side,

Tears forming rivers over sad lands;

You fight the urge to run and hide.

 

Witnessing emergency crews arrive

Time and time again.

The fear gives you drive,

Too young to remember when this begun.

 

Waiting for your sibling to come home;

The longest wait ever known.

It seems alone you will always roam

But you are not one to moan.

 

You know the routine as it is

When the door is finally open,

You rush forward to your sis.

The flood of emotion like the ocean.

 

You settle in to your version of normality,

The only one you know.

There is no formality.

Your love will only grow.

This is a question I hear more frequently than I care to admit.

As a parent to twins, the comments such as ‘double trouble’ and ‘you’ve got your hands full there’ are as common as seeing a penny on the floor, but one thing I didn’t expect was the intrusive comments about Alfie.

The first disability we found out about was Alfie having a bilateral profound hearing loss.

Basically, they played the loudest noises in the world to Alfie whilst monitoring his brain for mental reactions as well as looking for physical reactions, and there was no response.

Not a single blink of the eye or jump in a brain wave. Nothing.

And people would comment on how well he slept in loud places, so we would explain that he is deaf and that was that.

A few comments of pity for Alfie but mostly hope for the future and the fact he would someday have cochlear implants.

Then came the diagnosis of spastic quadriplegic cerebral palsy.

What a mouthful.

This came when Alfie was around 9 months old. He still couldn’t support his head, let alone roll over and try to crawl like Rory.

And as they have gotten older, and their differences have become more prominent, the comments from others have gotten worse.

From ‘why can’t he do that’ to ‘what is wrong with him?’

It appears that when confronted with a child who is different, society believes that there must be something wrong.

It is not enough for a stranger in the street to tell me something is wrong with my child, many like to then inform me that my twins cannot possibly be identical, otherwise both would be disabled.

The first time someone said this to me I was so shocked I couldn’t even speak.

But it has happened again and again, especially as Alfie’s disability becomes more prominent when Rory is walking around, and Alfie needs to be carried or can roll.

I have explained to complete strangers that Alfie’s disability is a result of a complication due to being identical twins.

I have been angry at the person thinking they know more about my children than I do.

I have been offended, and I have been upset. I have taken the time to go into detail and I have also told people to mind their own business.

Yet whatever my reaction, intrusive and offensive questions still come from complete strangers, and whatever I say, they always think they know more or that I am wrong.

I’ve come to learn these questions do not stop.

If anything, they become more intrusive and more offensive.

A sad fact of society and one I hope changes.

It was that strange time between Christmas and new year when no-one can work out what day we are in and everyone is living off Christmas Day left overs still.

My children were struggling with the lack of routine, the change to meal times and the general chaos that comes with the festivities.

My son, especially, was struggling to make sense of his day and the four walls seems to be caving in on him.

We all needed out.

But where do you take two autistic children that doesn’t have flashing lights, loud music or crowds. Where would my son be safe with his vision impairment, epilepsy and rare genetic condition?

I opted for a soft play a few miles away in the hope if things didn’t work out then at least no-one would know us.

From the moment we arrived I felt a peace about my decision.

My son is almost my height at just ten despite developmentally being around 12 months old, so my first concern now is always any height restrictions.

Thankfully he was under this one but when I asked staff about it and briefly explained he has some special needs the lady at the desk smiled at me and said ‘in that case he would be exempt anyway.

Enjoy your time in soft play.’

It’s a little exception to make really when parents much taller and heavier often climb on with their children so it’s such a huge relief to know we can return even if my son takes the common pre-puberty stretch so many boys do at his age.

So many parents of children with developmental delay struggle when their child is physically too big for things that developmentally still meet their need.

It wasn’t long before the kids were hungry and thirsty.

I had opted for the ‘meal deal’ as we came in as it wasn’t too long before lunch and my son is often calmed by food and drink.

A quick glance around the other tables had me spot an immediate issue though; all the children who had drinks had them in small plastic cups.

My ten-year-old son still can’t drink from an open cup and I began to sweat about the fact he would scream for a drink but be physically unable to use the only cups available.

I tentatively went to the counter to order, nervous about asking for something different so my child could drink.

I needn’t have worried at all.

I quietly asked if it was possible for my child to have a lidded cup with a straw as he had severe autism (I thought they would understand autism rather than listing all his other needs to a stranger) and was not yet able to drink from an open cup.

The staff attitude was amazing!

They made sure not only that he had a lidded cup with a straw but that the lid was secured tight and that the juice was suitable for his needs.

While I had been ordering I was watching my son constantly as he sat in a nearby ball pool gathering the balls between his legs and sending some flying in the air.

He was laughing and rocking unaware of anyone or anything else in the world.

Now for the biggie!

In order for my child to safety go on the main frame he really needs me with him.

His epilepsy is not fully controlled, he has several serious eye conditions that mean his sight is very limited and more worrying for me is the fact he can lash out at other children because he doesn’t understand or he gets anxious.

For his safety and others, it was best if he had one on one adult support.

As the attentive server handed me the drinks and a pager to say when our food would be ready, I thanked her, looked over at my son, then bravely asked if I could possibly help him on the main equipment as he was disabled.

I braced myself for her reply.

I was told that I absolutely could go on with him and just to ask any staff member if I needed any help at all.

I don’t want to be the different ones but in order for my child and others to stay safe sometimes I need to get over my own embarrassment and ask for accommodations to be made.

Not every soft play is so accommodating of children like my son.

All it took was staff willing to bend the rules a little for a child with complex needs, a little compassion and an understanding that I only wanted to keep my child and others safe.

If only every soft play, bowling alley, business, shop, swimming pool or restaurant could accommodate families like mine like that soft play centre then perhaps less special needs families would feel isolated and alone.

Thank you, soft play, for accommodating my son so naturally.

It’s possible that extreme rudeness and immense kindness have always existed around me.

However, until I became a parent of a child with special needs, I was oblivious to it.

Until I was thrust into this life, I had no idea how broad the spectrum of human character really can be.

Now, living in a seemingly different world altogether, we experience both ends of this spectrum every single day.

I have sadly observed utter ignorance and intolerance….and on the other hand, I’ve gratefully witnessed the sincerest graciousness and humanity.

A couple months ago, my family was shopping in our favorite bookstore.

My husband and son were perusing the bookshelves and looking at vintage vinyl records, while I pushed my daughter, Ryleigh, in her wheelchair to the children’s section.

She is eight years old, nonverbal, and completely filled with joy.  She was clapping and loudly squealing with excitement as we rounded the corner to look for “Pete the Cat” books.

A little boy stopped right in front of us, very abruptly, and just stared at us.

Gently easing the wheelchair around him, I politely said, “Excuse us, please.”

Children stare…it’s a behavior that we’ve experienced many times, but I was hoping his manners would kick in and he would at least reciprocate the smile my daughter gave him.

To my dismay, his mother soon approached him, nudged him to move on, and then gave us the same cold gaze.

RUDE.  How much effort does it take to show some consideration?

As if that wasn’t enough thoughtlessness to encounter, we saw her again in the parking lot as we were leaving.

She was parked right beside us and impatiently huffed as she had to wait for me to transfer my daughter to her car seat.

We were an inconvenience to her, and she didn’t mind showing it.

A few weeks after our brush with discourtesy, we had an experience of sweet humanity.  Ryleigh and I were in a waiting room, as she needed chest x-rays done.

A little girl across the room was watching us.  I heard her whisper to her grandmother, “Can I go speak to her?”

The grandmother kindly asked my permission for her to come join us.

I smiled and welcomed them both over.

The little girl told us that she was six years old and that she loved Ryleigh’s sparkly unicorn shirt.  She sat with us and shared how she had broken her finger and had to have an x-ray too.

Her grandmother explained that the child never met a stranger, and that she just loved being around other kids.

As we chatted, waiting to be called, I learned that the gentle grandmother had worked as a Special Education Teaching Assistant in the past.

She was warm and kind; her granddaughter possessed those same wonderful qualities.

It really doesn’t take much to make or break someone’s day.  Our actions speak quite loudly.

Even a simple smile or a positive acknowledgement can go such a long way.

Be thoughtful.  Be friendly.  Show courtesy.

Teach your children to show respect and understanding towards others.

You wouldn’t believe the difference it could make.

In a society obsessed with inclusion and acceptance, it would appear that this only stretches so far.

It is okay to choose and change your gender, it is okay to be any weight, it is okay to physically alter your body, it is okay to home-school your child and so many more things like this.

But a key point in all of these, is that people have a choice and are included regardless of their choice.

Yet when will disabled people get a choice?

Alfie did not choose to be disabled. He didn’t ask to rely on others for everything.

He is endearing, hard-working and a delightful little boy who lights up a room.

Yet no matter how hard he tries, he cannot choose not to be disabled and still faces exclusion.

When we go on family days out, we struggle to find activities Alfie can join in with.

Supermarkets are only now supplying trolleys suitable for disabled children, yet often only have one in each store.

Parks do not have wheelchair accessible equipment and activities and groups Alfie may find fun are often deemed ‘too young’ for him due to him being a ‘toddler’.

But what do you call a toddler who cannot toddle? What group do they fit into?

These issues are just the starting point and Alfie is only two.

We are at a strange point when we are starting to consider schools for Alfie and Rory, and already we are facing battles and hurdles.

Supposedly inclusive schools cannot offer Alfie a place as his care needs are too great.

The local authority suggestion is to send Alfie to a special needs school, away from his twin Rory.

Rory wouldn’t even be allowed to attend the special needs school with Alfie as he does not have a disability.

How is that inclusion?

From the tender age of four, society still wants to separate those who are able from those who are disabled yet preaches about inclusion.

They do not consider the damage this may cause to both Alfie and Rory who have never been apart for more than a few hours.

Yes, they are individuals, but they are also twins, they rely on each other for support and comfort, as they always have.

It is not as though they could even see each other at break times, as they would be in completely separate schools, and yet this is seen to be a solution.

Children are told not to stare, and adults avoid interaction as much as possible with anyone who has a disability.

Is that person not still human? Do they not deserve to be a part of society?

One thing that is clear is that exclusion is learnt and a product of our environment. Alfie and Rory have been in the same nursery since they were 11 months old.

The children they play with both at nursery and at home see past Alfie’s disability and treat him no differently to Rory.

Alfie is always included and mixes with able-bodied children. He has additional support by a fantastic key-worker at nursery and by us but is never excluded from an activity.

He is encouraged to always join in and is never isolated.

It would appear that society could learn a lot from two-year olds about what inclusion really means.