Tuesday, 19 December 2017

The day I hid I had kids with disabilities

Boy in park with red posts

If you get the chance for a bit of pre-Christmas rush pampering, I'd thoroughly recommend it. Spending twenty minutes having someone massage my hands and paint my nails feels like a lap of luxury.  A spa treatment is even better, lifting the weight off my shoulders for a few minutes.  But, just when I have some of this elusive 'all about me time', I do something I thought I'd never do.  I deliberately hide the fact that I have two autistic kids.

It can be difficult to treat yourself when your kids have disabilities.  It's simply difficult to leave our kids with anyone so getting time to go to a spa for a treatment is fairly rare.  Sometimes the hubby and I get time out by ourselves, and on a special occasion, like as an early Christmas gift, I may even spend that time with just me.   And that's just what happened when I recently spent my spa voucher.

I booked in for a body scrub.  It sounded exciting, and more importantly I could fit it in between various school related activities. I love going to a spa for a treatment.  I love the big hot showers, the fluffy bathrobes and even the floppy flat flannel slippers I get to wear while I sip a mint tea.

A smiley lady called Sarah came to get me for my treatment.  Some people like to chat while they have their treatments and others don't.  I'm in the 'don't mind' camp, or at least I was - now I'm not so sure.

I had my treatment explained and lay back on the lovely warm bed.  The candle light flickered, the smell of lavender wafted past my nose and the tinkly music filled the air.  I took a deep breath.  It felt like the first proper breath I had drawn in ages.

I relaxed.

Sarah asked if I'd had many treatments before.

"Not many recently (!), I used to have them more often, before the kids. But my youngest started school in September and I can suddenly fit in this type of thing again, " I smiled.

"That's nice. I've got all that too look forward to," Sarah replied.

"Hmm?"

"We are 10 weeks pregnant. I'm so excited.  How many children do you have?"

"Err (I actually have to think for a moment)... three. Two boys and our youngest is a girl."

"Amazing, I don't know how you do it. I'm petrified and all a buzz at the same time.  It must be amazing to have three kids running around."

And I said "Yes, they are amazing."

"I've just had the Downs test and that came back low, so it's full steam ahead," she said.

I stopped myself.  Yes, I think 'Down's Syndrome' is the proper way of saying it but that wasn't the main thing I picked up.  It seemed to me (and I could be mistaken) that lovely Sarah felt she had got over the 'potential disability hurdle'.

As a mother of two autistic boys who also have diagnoses of ADHD, hypermobility and dyspraxia, I had to bite my lip a little.   The truth was that this very excited, slightly younger than me, lady, did not want to know the statistics of kids born with autism or any of the other things in our diagnosis list.

I stayed quiet.

When she noticed the bruises on my arms, and said she bruised easily too, I smiled. I didn't say it's because my autistic son hits me.

When she said she would be careful about the scratches on my legs, I didn't say it was because my son wakes several times every night and kicks me in the bed as he bounces about.   I said I understood about poor sleep when she talked about her early morning sickness, but didn't say why I was kept awake.

When she said she was thinking about having nine months off and then going back to work, I didn't say why I only went back part time.

When she asked what I had to do after the treatment, I said I had to pick up the kids.  I didn't mention it was the school run from hell to different mainstream and specialist schools, that has to happen in the car and then I'd be in a rush to make music therapy.

When she asked if I worked, I said it was mostly looking after my kids and did some evening teaching. I didn't say I wrote an autism blog, that I was a trustee for a disabled children's charity or details what 'looking after my kids' actually entailed.

I hid their disabilities.

Did I do the right thing?

Honestly I don't know.

We've had to jump through hoops to get my boys on the right paths for their education.  The family has had difficult times when we've gone out.  I've had broken sleep for nearly ten years, and the sleep clinic has recently confirmed, this is unlikely to change. One of my boys will be on medication for many years to help him with some of his difficulties.  One of my boys is like a quarter of all autistic people in the fact that he is pre/non-verbal.   We've been to A&E for things related to their difficulties on several occasions. This is just a glimpse into some of our challenges.

What held me back?

At that moment, Sarah had a whole wide future in front of her.  She was, most likely, emotional, excited and worried about what her life would be like with a newborn.  Let's face it, any baby turns your world upside down. I know how it feels, because I felt it too.

Dear Sarah, was only 10 weeks into a rollercoaster ride of all sorts.  I was so worried about things going wrong with the pregnancy, we didn't even tell our parents until after the 12 week scan. I guess Sarah didn't need additional worries.  She didn't need to think she may have had her last night's good sleep for the next 20 years.  She didn't need to think about the possibility that her child may hit her or others.  She didn't need to think that education for them would be a mountain of paperwork.

However, I may have omitted these details, but I didn't lie either.

I said I was proud of my kids, and I truly am.   The caring nature of our daughter, the special moment of a connection with our pre-vernal son and the truly magical moment our eldest decided he was who he was, autism and all and all highlights.

I said my kids were amazing, because they are.  The way the our son's have created ways to cope with daily life is inspiring and the way my daughter looks out for them is so grown-up.

I said my kids are the apple of my eye, because I love them to pieces.   I said I worry about them, but every parents does right?

But as I left the spa that day I felt odd.  I wished Sarah 'all the best' and thanked her for my treatment. My body felt better, my mind relaxed but my heart a bit heavy.  Had a done wrong by my kids?   I don't think so, but I felt a bit uneasy.

I went on the school-run from hell with it's calamity of pick-ups, and kissed, hugged and squeezed my children in turn. When we got home we settled in the routines of homework, iPads and dinners. We even had a relatively stress free bedtime.

I tucked all the kids into their beds (several times for one of our sons) and smiled with delight as each made their best effort to say 'love you' and 'goodnight' back to me.  Life may not be what I expected when I was pregnant with our first child all those years ago, but, it sure is special none the less.

13 comments:

  1. Here's how my conversations go:
    Do you have kids?
    Yes 5
    Boys? Girls?
    4 boys and 1 girl, but they're all adults now and have left home
    Bet having 4 boys around was a handful, must be lovely having a girl, how old is she?
    Almost 30
    What? no grandkids. How many Grandkids? Bet you can't wait?

    And here we change the conversation depending on who I'm talking to.

    Nail bar, hairdresser, random person in coffee shop etc. Yes it will be lovely, followed by immediate questioning of their family.

    Work colleague, neighbour,potential friend etc. Actually the eldest is disabled and lives in a care home in the UK and I'm her step mother but have been 'Mum' to her for the past 18 years (so i can divert questions such as 'did you know when you were pregnant? etc)

    For me, it's not about being embarrassed or feeling awkward, it's just sometimes there's more to me than being defined by my children, regardless of their abilities and I find people feel the need to ask more about a disabled child than they do the other and I'd rather save them making statements like 'my sister works with kids like that, it's so rewarding'

    #TriumphantTales

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  2. You did the right thing. You can talk about your children if you want, but you don't have to. Not talking isn't exactly hiding. Don't feel bad xx

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  3. I think you did the right thing, their disability is not what defines them completely, and you didnt lie or hide anything, you just werent forthcoming with the full extent as you judged the situation and didnt want to scare Sarah off. I think had it be a scenario where Sarah stated she'd discovered her child had a disability you'd of course be forthcoming and inform her of your experience to potentially support her in her journey. As this wasnt the case, I dont think you should feel bad at all. She is a stranger afterall!
    Thank you for sharing this with us at #TriumphantTales. I hope to see you back next year! Merry Christmas Lovely!

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  4. You were there to relax and have fun, be a person instead of a mum for a few hours. You don't need to divulge every little bit of you and your children's lives. That's the great thing about anonymity, you can switch off for a while and no one need know. I hope you enjoyed your spa, sounds lovely.

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  5. If I had been lying on that table, her oh-so-casual comment about 'the Down's test' would have hit me as though she had stabbed me in the heart.
    Because her words imply, almost explicitly state, that if her much wanted baby had been found to have DS it would suddenly have become disposable. She thinks a child like mine is not fit to live. She does not realise, in her ignorance, that she is existing in a bubble of false security.
    It saddens, and worries, and angers me how this test, and it's results, are presented. A negative result is viewed as though you've avoided the worst possible fate that could befall your baby, and everything will be perfect and hunky-dory. It provides no such guarantee. It tests for only a few 'conditions' and yet so many others exist. And while Down's Syndrome isn't the future anyone would choose for their child, it is very far away from being the worst fate that could befall them, or their parents, for that matter.

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  6. Beautifully written post, and il echo what everyone else has said- you didn't hide it, you just chose to relax and not to worry a newly pregnant mum. Hope you enjoyed a well deserved spa treatment #spectrumsunday

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  7. This was a good read, thank you! I can't see myself going to a spa anytime soon, lol, but if I did I'd probably prefer silence, in a situation like this. I generally like to talk with people, but... I wouldn't have wanted to know that she was pregnant when it's still so early, and the Down's comment would have been hard for me to not comment on. And she wouldn't have wanted me to tell her about the potential troubles ahead of her.
    It's tricky though... Wanting to have conversations and interaction with people, but not always ready to take their stories on board (or sharing our own) x

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  8. Ahh Ann. Sometimes it’s nice to just be Ann though. Not a parent, partner or a parent to kids with additional needs. I sometimes feel steered into that conversation but just don’t want to discuss it. I want ME time. I don’t want to talk about the struggles, get people’s praise or sympathy.

    Next time, try and get an overnight break. I thorougly recommend it ;-)

    #SpectrumSunday

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  9. Good luck Sarah if your children do rock the extra chromosome!

    Love you and good night.

    #spectrumsunday

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  10. I love this post! I dont think you did the wrong thing by your kids at all. I also think you are a brilliant mum! #spectrumsunday

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  11. I love this post! I dont think you did the wrong thing by your kids at all. I also think you are a brilliant mum! #spectrumsunday

    ReplyDelete

I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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