My living room floor has them, shelves on my children’s rooms have them and even their beds are lined with them…set ups of toys that don’t appear to get touched. 

I vacuum around them, sweep beside them and dust them without moving them because while these toys might appear to be unloved and untouched they are actually extremely precious exactly where and how they are. 

My children are autistic and they play quite differently to others.

My son loves toy plastic food, cuddly toys from his favourite show and putting things in and out of bags.

His sister loves Playmobil, things you can collect, and little figures.

Every night before bed my son lines up a row of plastic food on his bed before going to sleep and my daughter spends hours looking at her Playmobil set ups without ever touching them. 

My son has no spoken language and significant learning difficulties so he can’t explain why he does this but his twin sister can.

I asked her recently about her toys. 

“Mum who do toys have to be touched to play with them? I like to imagine in my mind what is going on in the toy house or with my figures because if I move them I worry they won’t ever look exactly the same again. I worry I might lose a piece or get it mixed up with something else and they are too precious for that to happen. I like looking at them and knowing they are exactly as I left them.” 

She really got me thinking.

How many adults like to display trophies, awards or even photographs? We gain so much from looking at these things, remembering past times and people and achievements.

We visit art galleries, museums and admire displays in shop windows.

We don’t feel the need to touch, move or ‘play’ with these items and yet this is accepted and encouraged. 

But whenever a child is given a toy we somehow expect them to touch, manipulate or move it in order to accept that they like it and are playing with it. 

For some children, and adults, the appreciation of an item is not in its manipulation but in its beauty and perfection and simply in its ownership. 

So if your child, autistic or not, builds a Lego model once then sits it on a shelf, or set up a dolls house only to just look at it, or lines up cars or toy food in lines then walks away, don’t be too quick to think they don’t like the item, or they are not playing.

Sometimes the toys that don’t seem to be touched are actually the ones loved and appreciated the most. So much so that they want them to be perfect forever. 

It might not be how many others play but if it brings my children comfort, happiness and joy then it brings all them to me as a parent too. 

We all have them.

Days where we just feel a little bit down and can’t help but wonder why.

It might happen after a busy day, it might happen after a day of nothingness.. But it will happen to us all at least once. 

Your why moment could be anything from “why won’t my baby just sleep no matter what I try” to something as deep as “why do bad things happen to good people”.

The worst thing about these moments?

There often never seems to be a definite answer. Ever. So that closure you were looking for, the answer you’re hoping will jump out at you, it just doesn’t seem to be there. 

But there are things you can do to help.

It could be a phone call or a message with a close friend or family member and it really does help to get things off your chest.

It’s so important to talk, never keep anything that’s really worrying you to yourself.

Or even if it’s not really worrying you, it’s sometimes good just to have a bit of a moan isn’t it!

For me, it was social media that helped me when I’m having a why moment.

I joined groups and connected with people I would never come across in my day to day life and the most amazing thing is these people get it, they really do!

Those why moments that you’re having, you can be sure that they’ve had them at some point too!

They’ll not have the answers but they’ll have the understanding.

You might post a worry or message someone and the reply you get is often that they’ve been through the same “and here’s what I did to help!” 

Making the decision to connect with others on social media was the best thing I did for me – but of course it’s not for everyone.

We all have different ways of coping but one thing to make sure you do, is find your way.

Have something (or someone!) that you can do to ease those worries, to help that anxiety and to lift your mood when it’s down and to make you see things from a different angle. 

For example, take a look at the photo attached to this blog. What was your first reaction? 

Now what if I told you that’s it’s a beautiful autumn day painted by my 4 year old son with cerebral palsy, he tried really hard and was very proud of himself (it’s now hanging up in my living room!).

Did that first reaction change?

All you needed was me to tell you the story behind the image.

Sometimes it helps just to have someone change your view of the situation and suddenly things somehow seem that little bit better. 

Last month after seeing countless Facebook advertisements for a mystery subscription box themed after one of my favorite horror flicks, I caved in and signed up.

Ever since the package came, I’ve spent a few nights a week trying to decode, decipher, and seek answers to the first part of this puzzle.

After an appointment with a geneticist last week, I realized that having a rare genetic condition is a lot like trying to work through the mystery in a box that’s sitting on our dining room table.

I was born with a condition called Oto Palatal Digital Syndrome (OPD).

It’s so rare that I had no idea there was even a name for it until my daughter Lilly was born in 2006 and diagnosed with it when she was less than a week old.

When I was born in 1972, the doctors attributed my issues (small lower jaw, cleft palate, and webbed fingers) to the fact that my mother was 41 when she gave birth to me.

In 1972, having a baby at that age was practically unheard of.

When I was older, it was determined that I had some sort of syndrome, but they couldn’t pinpoint exactly what it was.

When I went in for genetic counseling when my husband and I decided to start a family, I was told that there was a 50/50 chance of passing down whatever I had onto any children we would have.

As it turned out, 2 of our four kids have OPD.

After Lilly was born and diagnosed, I had my first clue- a name, but back then, even hours in front of a computer yielded little information.

As time went on, I got more bits and pieces of information that would help me understand how I came to have OPD when there was no known history of it in my family.

I learned first hand that paying attention to the genetic lessons in high school biology paid off after all when the geneticist got out the Punnett Square, a diagram used to determine the probability of an offspring having a particular genotype.

Our most recent genetic appointment held the biggest hope for a “break” in the case- an order for whole Genome sequencing, which we had hoped to get for years, but insurance wouldn’t touch.

Now, thanks to a grant, we’ll be swabbing the inside of our cheeks soon and sending it off to a lab to be decoded and hopefully find some answers and be able to cross some “what if’s” off of our list.