Being honest on TV about special needs

How often are people really honest about their lives, their feelings, their motives in public? Certainly not most celebrities or politicians. So it was refreshing and emotional to watch Johanne Powell talking about life with her severely disabled adult daughter Siobhan, on Ireland’s The Late Late show following an article in The Irish Times, which I found quite upsetting to read.

Most opinions I see about carers are polarised: either we are saints or we are whingers, when actually we are all different. Some cope well with life as a carer, some cope because they feel they have no choice, and some want more, and there’s nothing wrong with that.

My 20 year old daughter would be be similar to Siobhan in many ways, and I identified with some of the things Johanne had to say, especially the drudgery involved in caring, from personal care, to hours spent hoisting, to repetitive form filling, to the battles for services, to the endless laundry and cleaning of disability equipment.

My daughter and I both need breaks from each other – she needs to spend time with her peers, and I need time to do things that would bore her, or that she cannot attend, and also to recuperate from the physical effort of looking after her – including lots of exercise to get stronger so I can keep caring.

The most emotionally difficult part of caring for B is when she is upset and cannot tell me what is wrong or where it hurts. Today was one of those days, a day when I brought her into town to get a new pair of boots for her, and cake to celebrate national cake day, and she sobbed all the way down Grafton Street and I didn’t know what was wrong or how to fix it. It was heartbreaking to hear.

However most of the stress associated with her disabilities is caused by the State, and the lack of services and the uncertainty about the future and what will happen to her when I die. Right now I don’t even know if she will have a day programme in 2017 or when respite might be offered, which will be needed if and when I get sick.

Right now, I still want to be her carer. I still believe my daughter and I could have a good life together, and a lot of the time we do. Perhaps in ten years I will feel more like Johanne, who can say?

Yet I have realised that sticking my head in the sand about the future is not fair on either of us. I’m just starting to think about independent living options for B and how that could be achieved: ideally by a “gradual, slow handover” from the family home to her own home.

But I know I would find it really hard to let her go. This is how she greeted me this morning.

smiley-my-daughter-b

I would miss that so much, and her company during the rest of the day too. And like so many carers, I’ve lost a sense of who I am and I don’t know what I’d do with myself if I wasn’t caring.

You see the problem is that most people cannot be honest about their lives. At least not in public. We have to consider the feelings of others and how the truth will affect them and how they would react as well. That is unlikely to be a problem for Siobhan or my daughter as they would not understand. But I can’t tell the whole truth about my life in public, even anonymously, and I never have. I’m sure that goes for most people. Even though we may find some things hard, we always have to protect those we love.

At one difficult point in my life I reached out for help to someone who had been in a similar position and was told:

“Everyone has their problems.”

At the time it was very hurtful, but I came to realise it was true.

So the conversation about carers also needs to look beyond what a few people are willing and able to say in public, so that the life needs of all special needs families and people with disabilities are considered. Let’s hope it happens, and quickly.

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15 thoughts on “Being honest on TV about special needs

  1. I like Johanne’s honesty and it makes me trust her and warm to her. People who are too afraid to do anything but gush about the joy their disabled child has brought them are missing out a whole aspect of the situation that needs to be aired. If it were all hunky dory and the parents are coping just fine, then there is no urgency for the Gov’t to help. This might be too painful for you to answer, but what has happened to other adults like B when they eventually became orphaned?

    Liked by 1 person

    1. At the moment they are placed in emergency residential accommodation – i.e. removed from their home and everyone they know, placed in a strange place with strangers that they may have never seen before and may not understand them, it’s a recipe for disaster, I think 😦

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  2. I thought she was incredibly brave. As someone without a disabled child I cannot imagine living a life where the baby stage, or similar, lasts forever. I also would never judge anyone who does look after their child for speaking their minds.
    It is so wrong that these silent children are so badly represented by our state and it is left up to exhausted family members, such as you, to fight for them.
    I hope you find a way through this that will work for you and smiley’s future. What a worry.

    Liked by 1 person

  3. I so applaud her bravery for speaking honestly about her situation. Personally, I find that people are uncomfortable when you speak about the hardship of raising a special needs child. When they ask how your kid is doing, they want you to give this upbeat, sunny weather report. God forbid you speak the truth. I also love how she talks about being delusional when pregnant and believe that your child will be perfect — an Olympic swimmer or computer genuis, perhaps. I was certainly that mom. https://lipstickandplaydates.wordpress.com/savannah-the-diagnosis/from-delivery-to-diagnosis/

    Liked by 1 person

  4. Interesting post, which I tweeted. Links in with the “cult of positivity” … the growing trend towards people feeling uncomfortable saying they are not ok, or things are not how they’d wish, or things are difficult at the moment… Like you, I see the benefits of appreciation and looking on the bright side, but I also worry about kids growing up surrounded by social media and it’s very one-sided portrayal of life.
    And, again, the woefully inadequate government provision doesn’t help matters!

    Liked by 1 person

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