How my sons inability to speak is tearing our relationship apart.

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This is something I have never written about before or admitted to anyone, but I have always struggled with my relationship with my son compared to his sister. I don’t love him any less nor do I favour one above the other but there is something that prevents me being as close to him as I am to his sister: his inability to speak.
The older he gets the more it is literally tearing us apart and that breaks my heart.

We are both trying, we are determined to try and overcome this but no matter what we do it is always there lurking like a dark shadow.

We play together, we ‘read’ together (well I read to him!), we share games and we eat together but it is incredibly hard to reach into him when he is non verbal. That breaks my heart. Having no spoken language at all really affects my son so much.

Having no language at all at almost 8 years old has forced him to be more independent.
He can’t ask for help or even ask for something to eat. So he uses his physical skills to open the fridge and help himself or open the front door and take himself out. The other night he took himself to bed because he was unwell. He has in the past brought me a cup or a bottle of juice and I have found him sitting at the table with an empty plate in front of him too. I would love to be able to hear him simply say ‘mummy, I have a sore head.’ Or ‘can I have something to drink please.’. He won’t always have access to the bottle of juice or cup to let others know what he wants.

Having no language is making him frustrated and angry.
imageI know if, like his sister, he could talk about his day at school and let us know what has upset him we could help him calm down and share his day with us. When he looks at a box of toys and points it is incredibly upsetting for him when we continually have to guess what it is he wants and we frequently get it wrong. He gets upset at certain programmes on the television but has no way of telling me why so he gets angry instead. He finds open doors highly distressing but has no means to tell me why so instead he becomes frustrated and violent. Speech would help us resolve all these issues. Some will be quick to suggest sign language or picture communication but these are so limited and his inability to make the right sign or find a relevant picture just make him even more angry and frustrated.

Having no language means he is at the mercy of others to communicate on his behalf.
Could you imagine having a wonderful holiday, printing out all your photographs and yet someone who wasn’t even there with you decides to tell everyone about YOUR holiday without allowing you to say a word? I am certain you would find that irritating and annoying and you would become very cross. This is what is happening every single day when I send my non verbal son to school. Adults dictate what information I receive on my sons behalf and tell me (if I am lucky enough!) about the experiences he has had. It’s not what I want. It’s not what my son wants either! He wants to be able to tell me about his day, his way! When I pick my daughter up from school she tells me about her favourite pencil breaking, the games she played at playtime and the funny shaped banana a child had in their packed lunch box! This is life from her perspective and something I can never ever get from her brother. A huge chunk of his day is a mystery to me and he has no language to enable that gap to be bridged. Have you any idea how difficult and heartbreaking that is for us both? It rips our relationship apart.

Having no language is life limiting for him.
He will never be able to read to me, or to anyone else. He won’t ever be able to use his voice to tell a joke or share a story. He won’t be able to sing or even give me cheek. As he gets older he will not be able to use his voice to ask a girl out or even say ‘I do’ on his wedding day. Asking the price of an item in a shop, asking directions, even telling the bus driver where he wants to go are all going to be difficult if not impossible. He is likely to need someone with him to support him throughout his life. Using a telephone is never going to be easy and connecting with other people will always be much more complicated.

We have tried alternative methods of communication. We spent years trying makaton but he can’t manage the signs himself and is struggling with picture communication too.

I know if he could speak so many things would be different. I know if he could speak we would be so much closer. How do I know this? Because he has a twin sister and my bond with her is strengthened every single day through language. She tells me about her day at school, her worries, her achievements. We play together and I join in her games because language enables us to play together. She reads to me and with me. She can tell me what she wants and I can listen. She shares her emotions, her ideas; her life with me through talking.

The more she talks to me the more we bond. The less my son is able to say the communicate the more our relationship is strained.

I am working on my relationship with my son every day. We have a very special bond and a deep love but there remains an invisible problem between us that is tearing us apart: the fact he is non verbal.

If I could change anything it would be that he would one day be able to speak to me. If only love could make him talk…

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Why is it so hard to hear what you already know?

imageSometimes you already know something. Your mind has already gathered all the facts and knowledge and came to its own conclusion. Circumstances have been leading up to things and you *think* you have it all worked out.

That is until someone else says what you have been thinking out loud. Then suddenly your world crumbles and you go to pieces, even though you kind of knew it anyway!

In one of our many meetings this last week a professional who has seen my children regularly for over six years voiced out loud my inner thoughts on the subject of my sons inability to speak. Isaac is now six and a half. And he still has no speech. He makes noises, he screams, he takes me by the hand to things he wants, and now he is older he sometimes just helps himself. He has only been pointing for around a year.

I swallowed hard and asked her for her honest opinion. “Will Isaac ever speak?” I *thought* I was ready for what she would say. I already know deep down that the older he gets the more unlikely it is he will talk. I live with his frustrations and anger everyday and hold him while he cries every night. I celebrate all his efforts at communication in every form yet still long to one day hear his voice. But the realist in me knows that time is passing and he still has yet to master the tiniest of words that babies less than a year say with ease. We haven’t had the ‘ta’ or ‘hiya’ or even the basic ‘goo’ and ‘gaaa’. We have no waving goodbye or clapping in glee. Eye contact and joint attention that comes naturally to the youngest of children is still a mystery to my six-year-old. I am not in denial.

Yet when she told me my boy is unlikely to ever speak to me it still broke me.

Why is it so hard to hear what you already know?

Next month marks the three-year anniversary of his first major diagnosis: Classic autism with global developmental delay and severe learning difficulties. He had only recently mastered walking at that point, had no language and was very much locked in his own world. We had been told he had autism since he was 21 months and had yet to meet any professionals who disagreed with this in any way.

Yet on the day we took him to that clinic assessment there was still a tiny part of me hoping everyone was wrong. My world fell apart when I left that appointment hearing what I already knew spoken back to me by someone else.

Isn’t it strange how hard it is to hear someone else say what you already know?

Maybe when no-one else confirms it we just try to somehow forget about it? Maybe we don’t really face our own worst thoughts? Maybe the reality of someone else saying it just makes us realise it is true after all. But then they add to the pain and harsh reality by sending it to you in writing. And we find ourselves mourning in our darkest moments all over again.

I sort of knew deep down there was more going on. He had other ‘symptoms’ children with autism didn’t really have. But I never wanted to hear someone mention that out loud. At least not to my face. Yet one day five months later we heard the doctor tell us our baby also had neurofibromatosis type 1. Combined with his other conditions (and we may yet hear more as we wait for full genetic blood results to come back) the future is not the brightest for my son.

I know he will need care throughout his life. I know it is unlikely he will ever drive, own a house, have a successful career or go to university. But am I still not quite ready for someone to voice those things to me.

Why is it so hard to hear what you already know? Because it means you have to finally face up to it. It means others know your worst fears and concerns. It makes you vulnerable. It brings emotions to the forefront you would rather others never got to see. It is like stealing away that tiny shred of hope you held on to for dear life.

Someone asked me how the meeting went. I told them we were just told some stuff we already knew. They looked at me in wonder as the tears ran down my face.

Why is it so hard to hear what you already know?