“What About Me?” -Kelly

Kelly and Toby sticking out his tongue with a lollipop

I’ve made no secret that our family life is somewhat different from the norm. Our home life is different as we live with 2 of our 3 children’s GAMT deficiency and all the disability that comes with it. Everyone knows it has consumed, shaped, and defined Holly & Isaac’s lives and our lives as parents.

But there is someone else living amongst all this – our middle child Toby. Our ‘neurotypical’ child. The child who is a sibling to children who are ‘different’. He didn’t choose this life and knows no different, but if his siblings were just like him, his life would be very different. Easier? Calmer? Almost certainly. He puts up with a lot, so much more than I wish he had to. Every now and again my eyes are opened to the sacrifices that at 6 years old he makes and doesn’t even realise and I am overcome with guilt.

I’ve thought a lot about his experiences and how it might affect him as he grows and how he might turn out as an adult. Are we damaging him? Is his childhood being tarnished? Will he have fond memories? I’ve seen the resentment, the invasion of his personal space, the ‘It’s not fairs!’ at the seemingly unjust treatment, the ‘What about Me’s?’ I’ve heard the ‘He always hits me! I wish he didn’t have Autism!’ and I know at some point soon he will be embarrassed in front of his friends. All because his siblings are ‘different’.

If I’m honest? Sometimes I feel some of these things too. But, as a parent, I’m equipped to handle life’s tragedies and disappointments (well I’m supposed to be anyway!) and I understand it’s ok to love our children and their uniqueness but to hate the situation. It can’t possibly be the same for Toby yet.

I’ve been racking my brain to see what I can do or say to help him understand, and to support him. We have promised ourselves that for all the time we spend with his siblings, that we will put as much effort into giving him as ‘normal’, carefree, fun, and balanced childhood as possible. A carefree childhood isn’t something that should be forced or scheduled in, but for our family right now it’s the only way.Toby Smiling

I also need to acknowledge the negatives to Toby. To let him know that living with siblings who are ‘different’ may make him feel things he doesn’t understand, that he might feel jealous or mad, angry or resentful. But I’m not cross about it and do you know why? Because at times I feel like that too.

But what I’ve realised is most important is he needs reminding from time to time that it’s not all bad. Not even nearly! Amongst the darkness, there is so much light.

I see the friendship that he has with his sister – a truly unique friendship. She trusts and relies on him and because of this she’ll always love him and be there for him too. He’s not just her sibling or friend, but also her protector – even at 6 years old and it makes me so proud.

I see the happiness Toby feels when Isaac reaches a new milestone or says a new phrase or does something unexpected, I can see he’s amazed and ecstatic for him, just as we are.

I also see how much Toby is learning every day through observation of us, his parents. Although he can’t always put it into practice (he is only 6!) he watches us persevering at being patient, being caring and loving even when things are really hard. It’s reflected in the selfless way he helps with drinks, buttons, shoes, and bringing syringes or nappies.

So yes, being a sibling to a child who is ‘different’ can be hard, but let’s be honest, I bet any sibling thinks their brother or sister is a total pain and despises them from time to time! For kids like Toby, once they come through it and out the other side, surely the future can only be bright. For all the struggles and injustice, these kids are living a life that will give them a strong heart and mind. They will learn maturity, compassion, and tolerance.

They will be amazing people and will hopefully change lives for the better, all because their brothers and sisters are a bit ‘different’.

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