Tag: autistic

Holland

6EC9C20C-4D35-4BBB-91CE-2A16D0DDEF69When my daughter was first diagnosed with autism, a friend sent this essay to me. A way to make me feel better at the time. –

‘Welcome to Holland’

Written by Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.” 

 

It is wonderfully written and full of hope. The sentiment being that though parenting our child is not what we expected, eventually we will come to adore the path we’ve been given. I would not change our daughter for the world and yet that doesn’t stop me mourning the child that we didn’t have. The one we hoped our daughter would become. The dreams we had for our parenting journey- all of which are ridiculous statements. I’m sure the reality of parenting for every parent is vastly different to the dreams we all had before our children were born. 

At the time of our diagnosis, the terminology for autism had changed. No longer were parents being given labels such as mild, severe or even Asbergers. The reasoning explained to us being that the spectrum is so vast that these terms are not helpful to understand the range of needs and difficulties within it. We still made the assumption that our daughter was high functioning. And in many ways she is. She is so clever. She must be the only six year old I know who has asked for a calculator for Christmas, because she’d rather sit and work out sums than play with toys. We assumed that the things she had difficulties with would work themselves out as she went up in age. Only they’ve got worse. And now somehow we are talking about special needs schools and having to accept the things our daughter can’t cope with.

In this last week, I attended my first ever ‘parent/carers forum’. However, I wasn’t meant to be there as a parent. I happen to have a book out that features an autistic child (based on my daughter) and was asked to attend to talk about it. Sitting amongst these other parents, listening to their stories and hearing about their children it slowly dawned on me that I belonged in that space too. My child needs extra support, and I need strategies and people around me to help me with that and in turn help me to be better placed to support her. It’s the first time I’ve thought of myself as a ‘parent/carer’ rather than ‘just a parent.’ (As if anyone is just a parent! You hopefully, know what I mean!) It was a real, ‘penny dropped’ moment.

In the run up to Christmas my social media feeds are full of photos of happy children in their nativity scenes with proud parents boasting, as they should be. And I ache. I sat through her nativity with my stomach in knots willing her not to have a meltdown. She was sat right at the back, placed by the teacher for support and by the nearest exit. She became so distressed by the end of it she was pulled out, screaming in tears. And those dreams for our child fall further. It’s a long process, I suppose. Accepting the different life your child will have from the one you had planned. And it’s taking me so much to stop pushing her into situations she isn’t equipped to deal with, because ‘that’s what normal families do’. 

Tonight I went to watch her in her gymnastics display, I watched on as the other girls were perfectly poised, ready to start as she was busily stroking the ground, enjoying the sensation and sparkle of freshly placed glitter on the gymnasium floor against her fingers. As each different acrobatic act effortlessly flipped across the floor I felt a tear in my eye for that old expectation versus reality. Don’t get me wrong, for every heartache I feel for each stumble or challenge my daughter goes through, I feel immense pride for all the things she achieves. Once upon a time I’d hoped to be clapping for her as she backflipped her way to glory (I’ll admit it, I always wanted to do gymnastics as a child and signed her up eager to live out my dreams through her!) Now, we roar with pride for getting through a lesson without incident, to even take part in the showcase display is a major accomplishment- it ended in tears as the dressing area was swamped at the end, too much for her already overwhelmed mind to cope with. She shouted at other children and hit me, quite a bit… but, she got through the display, in her own way.

We are not going to Italy. And that is ok. Honestly it is. But I am struggling. I really am. And with that comes the biggest amount of guilt. I should be ready to embrace life in Holland, right? I’ll get there, I’m sure. After all I have the best tour guide.  

 

TO ADD

I realise that this post reads as though I’m really negative. I’m not, mostly. But like all journeys, there are ups and downs. And this blog is here to document it all… With me writing when I feel the need to… Tomorrow is a new day. I’m ridiculously proud of my children. They are both amazing- I never stop feeling lucky!

Children Can Be Cruel

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One of the things that our daughter finds really difficult is forming friendships. As she’s got older her delays in social development are all the more evident, especially when she is compared to her peers. Today I spoke with the school play therapist about some of my concerns. “Well…” she responded. “It’s tricky as the other children are noticing that Taylin is different.” She is different. There it is. The crux of the matter. My heart broke a little bit. It often does when I realise the challenges she has to face, how far she is from the world we imagined for her.

Though we have embraced her the way she is and are coming to learn that her differences are also the very things that make her so special (she was removed this week from class for refusing to stop dancing in class- I’m not going to lie, a small smile might have appeared when I was told about this!), others still see differences as something to be wary of, to avoid. We are starting to see this with her peers. There are the parties she isn’t invited to, or worse the ones she is invited to where she hasn’t been able to cope. I’ll never forget her pushing and shoving other children gathered to sing Happy Birthday to the child whose party it was. She was desperately overloaded, desperate for space but also desperate to be part of the event. The birthday girl turned around and shrilled at our girl, “If you keep shouting you’ll have to leave my party.” We pulled her away and she wailed, kicking and screaming. It doesn’t matter that five minutes before children were teasing her with balloons, running from her laughing or that the music was painfully loud for a child’s party; at this moment it is our child making a scene. Our child is at fault. You can apologise, try to explain but it doesn’t change the fact that the next time that family is making their birthday plans the likelihood of our child receiving an invitation has significantly declined. 

There are no longer play dates, and definitely no sleepovers. She tells us of her ‘very best friends’ and in the next sentence will explain all about their games, where the aim is for everyone to run away from her and for her to be alone. She genuinely accepts that it’s a game. That’s what she’s been told and so that must be the truth. Then there was the girl who was her ‘new best friend’. Taylin was upset that she was soon to be leaving the school. On further questioning, Taylin exclaimed that, “I don’t know why she is leaving but she said that if I don’t stop following her she will have to leave the school.” Taylin is quite happy in her blissful ignorance. We’ve tried to explain that maybe these children aren’t her friends, maybe they don’t really want to play with her. But she doesn’t understand. Thankfully, at the moment, she is happy in her bubble. Looking at the world through her eyes, everyone is a friend. And luckily she has her younger brother, two years her junior, they could almost be twins for how well matched they are in terms of social development. They seek each other out at play times at school, looking out for each other. Which makes a massive change from when they are busy trying to murder each other at home!

Kids can be so unkind. The wonderful positive of her blissful ignorance is that she doesn’t always see that children are cruel to her. I’ve noticed. The children who, when Taylin approaches, walk away. The ones who point at her and laugh, mock her. I’ve been within earshot when two children were plotting to ‘get her at playtime.’ I’ve been filled with absolute rage and utter despair. I’ve wanted to pull her out, take her home and wrap her in cotton wool. Keep her safe from children who don’t deserve the very unique child that she is to be in their world. Of course, I’ve spoken to the teacher, multiple times. I’ve been assured that Taylin is kept safe, that the school haven’t noticed anything untoward. But then there’s this horrible niggling feeling that maybe she isn’t in the best possible place. That I should trust my Mother’s instincts. And then there’s the realisation that if these children can be so brazenly cruel to her, in my presence, with their own parents standing nearby, then what on Earth are they like away from the prying eyes. I’ve spoken to the school about my concerns, that I am considering removing her and maybe trying a different school and been met with the reality that wherever she goes she might experience the same from others. There will always be a class bully and the ignorance in others sadly, will always exist.

I’ve also been told that Taylin does wind the other children up, she doesn’t recognise when she is annoying others… Well, that’s not actually her fault and does not excuse other’s behaviour. If a child is ‘different’ then it’s the school’s, the parent’s and even society’s (damn it) responsibility to teach awareness and acceptance, kindness and understanding. And I’m afraid that until they do, our daughter will continue to be ostracised.

What is there to do? I keep fighting. Addressing the school with my concerns, speaking to the other parents when appropriate. I talk Taylin through her day, help her to reflect and remind her that she must speak up when others are cruel and I try my best to give her the tools to cope. And I continue to be thankful for that beautiful, blissful ignorance. For now shielding her from the harsher aspects of the World around her.