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.

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When the first sign is every bit as wonderful as the first word

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It was a day like any other. Often this is the way in life. Days come and days go and right in among what becomes everyday and ordinary, something quite amazing happens.

It was a Wednesday. That much I know.

I had dressed my son, made him breakfast and checked his school bag had everything in it he needed. Unlike other seven year olds he had no pencils, no homework or reading book and no snack in sight. His bag is full instead with wipes, change of clothes, spare nappies and his home/school diary (my lifeline of communication with his school life).

Communication is so vital for families like mine. We can not ask our child about their day, or listen to them read to us, and due to the physical distance from home there is so little contact with school staff. There is no regular coffee mornings, or weekly assemblies parents can attend and I never get to pick up my son at the school gate and chat to other parents.

This is the reality of children who, for whatever reason, can not attend their local mainstream school. It can be tough. It is the harsh reality of having a child who can not talk or who has communication difficulties.

While my brown eyed boy was never far from my thoughts, in real life he was actually half an hours drive away. And that day he was reaching a milestone that I had no idea about.

On Wednesday 20th January my son learned his first sign. For families like mine this is every bit as massive as the average child saying their first word. The beauty, the joy and the celebration is just as special. The moment deserves sharing and recording. Yet none of the baby books have a page to record the day your child first signed. What a precious moment they are missing out on.

I had no idea he had had such an amazing breakthrough in his development. Like so many parents who hear about their baby taking their first steps, or riding their bike for the first time and feel so devastated that someone else got to witness it before them, I too felt just as heartbroken.

The obstacles my son overcame to achieve this moment, the perseverance and dedication of staff in his school, the concentration required of my son, and the co-ordination skills required all worthy of celebrating on their own merit.

A whole new world of communication may just be beginning to open to us. He may finally have a voice.

It was a day like any other. That was until I read his school diary and I cried.

To me the first day he signed is every bit as wonderful and significant as the first time any child speaks.

It is precious. It is beautiful. And it is worthy of recording.

You see days come, and days go, and sometimes right in the middle of the ordinary something quite amazing happens.

On Wednesday 20th January Isaac signed for the first time.

**this post originally appeared on firefly** http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-the-first-sign-is-as-good-as-the-first-word#.VreyK3LXVfo.facebook

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