When our worlds collide

I fell in love with my children long before they were born. I will never ever forget that moment I first held them skin to skin. There was a bond that I felt could never ever be broken. I felt they were a part of me from the moment I found out I was pregnant. I loved feeling them move and kick and hearing their little hearts beat at every check up. I was connected to them. Our worlds were one and we would always be close.

Then autism entered my family.

That is not my sons fault in any way. I don’t resent him or blame him but I, as his mother, need to work so much harder to connect with him.

He lives in another world to me and I admit I have,at times, cried over that. I want that bond we had when I first held him. I want that special connection of looking at his eyes and seeing into his soul. I want to hear his voice, cuddle him, stroke his hair and share life with him.

imageHe prefers to look out windows, flap at lift doors and laugh at hand dryers.

Some days we are like strangers living in the same house. I meet his needs, he does what he wants. I create a routine and he follows along just because it is what we do here. Eye contact is fleeting, often non-existent. Words are never used. Body contact is on his terms and never conventional. When we try to understand each other it is like we speak in different languages or live in different planets. I try my way, he tries his way and often we both end up upset.

So when moments come along I throw caution to the wind and go for it in any way I can.

Today while on a train journey he sat beside me and we had some physical contact that did not mean climbing on my head or hitting me. We just sat beside each other. That was it. I felt like I was right back there the day he was born looking down at him filled with love and wonder and pride. A short moment in time when our worlds met and our hearts collided. Unity.

Later on as we got off that train and headed back to the car he did something so rare it took my breath away. He reached out and held my hand. Touch brings healing, restoration and love. He sought me out. He knew who I was and he wanted to know I was there. He did something other parents take for granted but something that is rare in my world. A short moment; two worlds coming together, no words needed.

Tonight as I bathed him, dried him, and met his physical needs I knew our bond was different yet still strong. Unlike his sister who spends bath time chatting, sharing and playing, he spends it simply splashing and retreating into his own world.

I read him his story, the same one I always do, but tonight there was no vocalising, or flapping, or pointing. Those little moments of coming into my world today had tired his mind and his emotions.

The irony is he is so fiercely independent yet completely dependent at the same time. He wants to be left alone yet he can never be left alone. He wants to live in his own world and I am the one continually trying to change that. It’s like the more he gives to me the more he has to be back in that bubble again for safety. He had had enough tonight. But I hadn’t. He was ready to be put down in that baby crib in the hospital to sleep and I was longing to hold him that little bit longer all over again.

I kissed him. I tucked him in and then I went to leave the room. Except I couldn’t.

So I broke my own rule and climbed in beside him. I expected him to scream, to push me away and wrap himself in his cover like he always does.

Instead he wrapped his chunky arms around me, snuggled in and smiled at me. He fell asleep right there in my arms, just like he did the day he was born seven years and five months previously.

I may never hear his thoughts and worries. I may never truly understand his sensory needs or fascinations. I can’t be autistic like he is.

But tonight I was right back there hearing his little heart beat and promising him the world.

Today, for brief moments in time, our worlds collided.

A moment is all it takes to connect.

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When there is less like you

 

imageSeven year ago I started my journey of parenthood. It has been the most exhilarating, exhausting and enlightening journey ever. Over those years many have journeyed along with me but every year more of those people take a slightly different route. Every now and again I stop and look around, and while there are still many of you cheering me on, I notice as my children grow that there are less like me.

When my child was not speaking at aged one there were hundreds of others like me. That first birthday came and so many of us were yet to hear ‘mamma’ or ‘daddy’ and so we journeyed together for another year.

When the second birthday came along a lot of those children were now talking. It was beautiful. But some of us were still waiting. So we travelled on another year.

When the third birthday came I looked around to see some were crying happy tears as those precious words were beginning to come slowly. There were still others with me walking the path together of ‘is this autism’ or ‘should I be worried by now’ and we consoled ourselves together in our group. I wasn’t alone.

As we approached four I could hear some cheering us on. “This is the year” they would say, “Nursery will bring him on”, “he will soon get there!”. Hope carried me on as one by one more of my companions on my journey started to see their little ones develop and grow and finally speak.

There were less of us by now. The odds were not in our favour as much. Our children were starting school and still not speaking. This started to get serious and worrying and yet we continued to journey on supporting each other. As our special babies began school something changed. A few more, slowly but steadily, began to speak and the group became even less. As beautiful as these moments were it becomes more and more scary when there is less like you.

Still a few more trailed off by the time my child reached six. Therapists, teachers and parents rejoicing at little voices emerging years after they should. Miracles still happening.

And there we were, still waiting.

He is seven and a half now. And still not speaking. My true companions are few now and reality starts to settle in. Are we all here now for life? Is there still hope for us? Is there a time to say that the therapies are not working for our child? Our small group sub divides between those who have children using pictures to communicate and those who use sign language. Some are even managing both! We start to celebrate communication instead of language.

Then there is my son: Seven, no language, not using picture communication and only mastering three basic signs.

It is lonely here in my world. It really is hard to stay positive. It gets harder to find stories of children like mine. Sometimes it feels like we were forgotten. I admit it is heartbreaking when there is less like you..

But the longer we wait…the more of a miracle it becomes.

So we keep on waiting..even if we are left waiting alone.