​I’m sure everyone is expecting me to say that my biggest disappointment is the fact that my child is disabled in the first place.

​Well it’s not.

Don’t get me wrong, I’d never wish for her to be disabled.

This isn’t the path I’d have chosen for her, for me, for any of us. But now we’re on it, we’re making the best of it.

No, no my biggest disappointment is my parents.

My disabled child’s grandparents.

Never did I imagine they would have been such a disappointment.

Never did I imagine that they’d so totally and utterly let her down and let me down.

When we’ve embraced it, they’ve ran a mile. When the going got tough, they got going.

The early signs were there that my parents wouldn’t feel ‘comfortable’ with the fact that they had a disabled grandchild.

They struggled to interact with her in any way. My dad even refused to lift her. It was difficult to ignore comments like ‘This sort of thing never happened in our day.’

No mum, it did, it really did. Previous generations just locked their disabled relatives in institutions to forever forgotten.’

Leaflets about our daughter’s condition were pushed to one side, left unread and eventually dropped in to the recycling bin. I was unfriended from Facebook because I posted too much about special needs issues.

Discussions about her future were quickly closed down, never to be spoken about.

In my family, the rules are simple; do not draw attention to yourself & do not make a scene.

That’s kind of impossible with a child with special needs. Loud noises, flapping and strange behaviours are usually part of the package.

You learn to grow a thick skin, ignore the stares and get on with living life the best you can.

They just couldn’t do it - she was an embarrassment to them. And over time they stopped coming out with us and their visits to our home got less and less.

Excuses were made at Christmas because it was no longer the relaxing event they expected it to be. Birthday cards were put in the post and not hand delivered with a present as they had been in the past.

Ten years on and we very rarely see them.

It’s sad isn’t it?

I’ve come to terms with it, it still hurts but not as much as it used to. But what I find difficult to comprehend is how they managed to do a fairly good job with me yet could not step up to the mark and be a great grandparent.

It’s not just their practical support I would like, I miss their emotional support too.

They must’ve given me the strength to be a good special needs mum (even if I do say so myself) so how come they are so lacking when it came to being a special needs grandparent?

I love to see grandparents commenting on blog posts, on Facebook, in forums.

If you’re a special needs grandparent reading this post - I salute you.

The very activity of reading this shows you’re involved, you’re interested and you want to learn more.

Maybe you torture your son or daughter with therapy ideas, email them constantly with toys suggestions or articles they might be interested in. Perhaps you drive them crazy, but please keep doing it because the alternative…well the alternative is being like my parents - in denial.

We’re a lovely family, me, my husband and our beautiful daughter who just happens to have special needs.

There’s a lot of love in our family, a lot of laughter, a lot of good times. It can be loud, it can be manic and it can be scary, this special needs journey but we’re determined to have fun along the way.

I just hope my parents don’t regret their decision not to be a part of our family. I hope they change their minds before it’s too late.

Our daughter is our life, our love and our greatest achievement.

So no her disability will never be my biggest disappointment.

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Comments

10
Nattyp1975's avatar
Nattyp1975 August 10, 2015

I can only say my heart goes out to you xxx

Irene Andrews Preston's avatar
Irene Andrews Preston August 10, 2015

I am a grannie to a special needs beautiful wee girl all I can say is their loss they don’t know what they are missing in not being involved in your baby’s life ,I feel honoured to be her grannie x

Janet Irwin Nordfors's avatar
Janet Irwin Nordfors August 10, 2015

I feel sorry for them, because they don’t know what they’ve given up. I have just become the legal guardian for my special needs grandson. His mom and dad both had drug problems. I couldn’t be happier to have him in my life full time. I will never have to worry about him being neglected again. I’m sorry that you are missing the support of your parents. They must have done something right, because they raised a compassionate and loving daughter capable of raising a special child. Forgive them and move on. Big hugs to you and your family.

Kay Liston's avatar
Kay Liston August 11, 2015

I am not a grannie, but I am a ‘grannie - aged ‘host parent to two beautiful little girls with special needs. They have stayed here in my own home, every weekend for the last 2 and a half years and bring nothing but joy to me and my family.
I follow this site for tips and support and I am saddened by your story. I feel sad for you, but also your parents. It sounds like they have ‘frozen’ like many fearful people, and probably don’t know how to thaw their rigid stance. I would ignore their reactions and coldness and keep showing them the love that seems so evident in your own family. Keep presenting your lovely daughter to them and creating occasions that they might participate in. You will feel the benefit of holding that door open and keeping the welcome warm.
You are kind and generous even in the telling of your story,. I hope you get the happy outcome you deserve.

Shoshana Isenberg's avatar
Shoshana Isenberg January 15, 2016

Thank you for this powerful essay.  I am the mother of a special needs child.  I lost my father five years ago.  I was always aware that he didn’t feel entirely comfortable with her (she’s quite a high need child, and wasn’t that responsive to his attention).  But reading your essay, I now appreciate the efforts he went through to overcome this and show support.  I wish I had realized this at the time, and thanked him.

Suzanne Fitzpatrick-Marquardt's avatar
Suzanne Fitzpatrick-Marquardt January 28, 2016

Oh my gosh this has got to be the saddest blog post. I’m sorry that your parents couldn’t find it in themselves to love your daughter enough to look past her disability. Even given the generation in which they would have grown up something simple is missing compassion, empathy and unconditional love for their children and their grandchild. God makes me feel even more blessed and thankful that my parents help and support me and my son where they can. Truly sad

Suzanne Fitzpatrick-Marquardt's avatar
Suzanne Fitzpatrick-Marquardt January 28, 2016

Oh my gosh this has got to be the saddest blog post. I’m sorry that your parents couldn’t find it in themselves to love your daughter enough to look past her disability. Even given the generation in which they would have grown up something simple is missing compassion, empathy and unconditional love for their children and their grandchild. God makes me feel even more blessed and thankful that my parents help and support me and my son where they can. Truly sad

Suzanne Fitzpatrick-Marquardt's avatar
Suzanne Fitzpatrick-Marquardt January 28, 2016

Oh my gosh this has got to be the saddest blog post. I’m sorry that your parents couldn’t find it in themselves to love your daughter enough to look past her disability. Even given the generation in which they would have grown up something simple is missing compassion, empathy and unconditional love for their children and their grandchild. God makes me feel even more blessed and thankful that my parents help and support me and my son where they can. Truly sad

Nancy Box Wiebe's avatar
Nancy Box Wiebe February 05, 2016

So sad they are missing so much ,I am the great grand mother of a piece of sunshine,he is the delight of our lives,I find it funny that if I haven’t dropped by in a couple of days he pouts and won’t look at me but when I ignore him in a few minutes he’s all smiles and showing off to get my attention, I can’t imagine life without him

Default avatar
Dan April 17, 2017

Sorry to hear about the absent grandparents. They don’t know what they are missing out on. The disabled child is still a human being and can sense love and compassion. It really sucks when relatives disregard a handicapped child and make excuses for not visiting.

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