Category Archives: Throw Back

We will wait for the light, but until then, I will sit in the dark with you!

The house stank of bleach. A two hour marathon of scrubbing and cleaning. No clutter remained, each piece of rubbish discarded, with papers filed and books returned to their shelves.

But it still wasn’t right.

It was like one of those makeover shows. Looking around my house I could still only see the before shot, the one through the grey filter, no sparkles or brightness surrounded me. I felt defeated, the need to find some control in my life when everything was falling apart, but my world still looked physically dull and uninviting.

A cry came from the other room and with a deep breath, I pushed my feelings down into my stomach, I wiped the tears from my face, smiled a fake smile and walked through to my three year old son who had awoken from a nap on the couch. His cry was the only sound he could make, the only method of asking for attention. There were no words or babbles, unlike my friends children of the same age.

He was non-verbal with a diagnosis of Autism Spectrum Disorder. A diagnosis we had received a few months earlier.

But it was not the diagnosis that had changed my current mental state, it was the lead up to it. It was the constant changes in our lives. The change from the lives we thought we would have, to a life that was spiralling out of control. A new path that we didn’t have the map to. A new set of rules we didn’t know how to follow.

Every day I woke with a fresh positive perspective, with a view that each new day would be better, but it never materialised. Each day grew darker, with feelings and emotions bottled up. The need to not lose strengh or show weakness in a world of comparison at the school gates.

I felt so alone.

No one understood.

My friends led different lives, where their biggest worries were of lost jumpers and water bottles, or what day was PE. Had their child got the right pencil case or whose playdate was next?

My worries were greater. The same things which were routine to everyone else were impossible to me.

I worried about how to leave the house without my son having a meltdown. I worried about whether he would ever speak, whether he would ever understand me, whether he would be able to live an independent life.

I couldnt walk into a shop, an activity centre or a church hall, because they were unfamiliar to my son. I couldn’t bend down to his level and explain, or talk him through it – words were meaningless. They were useless to a boy who didn’t know their meaning. We were foreigners from different worlds.

So as I sat next to him, I cried. The feelings I pushed down had run out of space to hide. My body ached with pain from the overload of emotion, where my world was an entrapment that closed in on me.

The cries of excited children ran past my window, calling after their friends, and it made me feel worse. My son silent next to me, oblivious to what I was feeling.

I felt like I had fallen from a place of control and shattered into a million pieces. But somehow I had held it all together whenever in public. No one who understood, and I had not allowed them in to understand.

As I cried alone in my front room, the front door opened. My husband stood in the doorway and without words approached me and took me in his arms. He didn’t tell me it would be alright. He didn’t tell me we would get through it. All those words had been said before and were being said without even saying them.

But he said he was there with me. We were in it together, and he would sit in the dark with me. And we would make it.

And we have.

We have come out that grey. The world took a while to get its glimmer back. It took time for us to work out that path and find the way.

Parenting the special needs way is hard. I know that because I do it, and will continue to do it.

It starts out dark, but it does get brighter, and as longs as you are willing to invite others in, they will sit in the dark with you.

You don’t need to sit in that dark alone.
There are many of us here to do that with you.

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TOTS100 - UK Parent Blogs
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Milestones Worth Celebrating!

I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a child’s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesn’t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesn’t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

TOTS100 - UK Parent Blogs
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