mental health – Not So Typical Family

6EC9C20C-4D35-4BBB-91CE-2A16D0DDEF69 When 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!

AC6C9C0A-A58D-4CF7-BEEC-78CF04682B86 Winter, school and children inevitably means that at some point, if you are a parent, you are going to get sick. Taylin was struck first, vomiting followed by fever and then an awful cold and bad chest. Theo quickly followed just as I was starting to feel under the weather followed promptly by Daddy. This was a week and a half ago. Being ill at the same time as your children sucks; when all you want to do is curl up in a ball but you are up and down cleaning sheets, refilling water bottles, doing little errands to pick up medicine and still keep on top of work (the joys of being self employed) your body has little time to recuperate. The children quickly recovered but with reports due for work there was no time for more time off for me. Back to school they went and back to the routine of juggling school runs, clubs and work.

Theo has been having play therapy sessions with me at school- he has been very emotional and acting out, the anxiety that comes with being a younger sibling to a child with special needs bearing fruit. I raised my concerns with the school and they offered to pay for the sessions, it was also a chance for the play therapist to trial a new method of play therapy for the school, VIG (video interaction guidance.) I attend play sessions with him that are filmed and his interactions with me scrutinised via recorded playback. It’s actually reassuring to see the bond between us evident and it’s a joy to see how happy he is in my company. We meet with the play therapist on Thursdays, the one just gone was a meeting to review the sessions, so it was one on one time for me and the play therapist. Now, with not having any time off I am feeling dreadful. My chest is heavy, my body is exhausted. And I’ve had the usual drama with Taylin at school- she’s thrown a book at the teaching assistant, she’s refusing to work, she‘s been sent to the deputy head, again.

The Thursday school run was stressful. But it’s not Taylin this time, it’s Theo. He has been constantly demanding food recently (no, it’s not worms!) I think it’s a source of comfort for him (let’s be honest it is for us adults most of the time!) When he asked me if he could have some more food, after he’d already had his cereal, a yoghurt, an apple and a banana- in the space of ten minutes, I had to put my foot down. Again, as often happens in our household, he exhibits behaviours he’s learned from the master of meltdowns, his sister, Taylin. He begins to scream at me, in my face, before his hand makes contact with one big whack. I’m beaten. “Have another damn banana,” is about to come out of mouth. No. I’m the adult. So I parent, as best as I can and get them into school, with screaming and bickering between the two of them the whole way in.

To the play therapist I go, coughing and sniffling and already feeling like a failure of a parent, ready to have my parenting put under the microscope. We are working together to try to make Theo feel more secure. The play therapist feels that his controlling behaviours (food must not touch, cushions must be just so and rules are so rigidly important that if he feels anyone has broken one he will burst into tears) and outbursts are due to him not feeling secure in the family- through all the outbursts from his sister, the extra attention she seems to receive over him, my hours of work being a tad all over the place. We watch the video footage from last week. Again, our relationship is beautifully played out; we laugh together, we put on voices and use our imaginations to create our own little world. I watch as the play therapist points out moments from the footage. “What can you see there?” She asks. I answer. It’s clear we are close, clear that we want to be together and that my attention is all his. “So, Mum, how can you make sure he feels that you are more present all the time?” I feel my throat swell. I am doing my best! I give the answers I know she wants to hear and then I stop. My hands go to my face and I’m done. “To be honest, I can’t even think about being more present when I’m so tired, I’m just so drained!” I exclaim, immediately feeling like I’ve let him down.

The play therapist turns towards me. “Who looks after you?” She asks. I’m flustered. I don’t need looking after. I’m too busy to be looked after. I say the words millions of mothers say everyday even though it isn’t really true, “I’m fine.” Let’s be clear, I wasn’t fine.

We talked, well, she talked, I listened. She asked whether I take time for self care. I couldn’t really answer. I took a day off a couple of weeks ago but there was so much that needed doing that I still went and did a food shop, called the council, chased a few payments and did some more errands. It wasn’t really a day off… And I know I need one. This year has been the busiest year for me work-wise and we have had the usual family drama to go with it. Including moving home just three months ago.

And I feel guilty, self care feels indulgent when the needs of my family are so great. When I must work more, make more money, try to better our lives. But then one of the statements the therapist made keeps repeating in my mind. “How can you be more present for your children and manage work when you are running on empty.” And the penny drops. To take care of them, of my business, I have to start taking care of me. But I’m not sure where to start. I rarely spend money on myself, I’d rather spend money on their needs than my own. Does self care need to cost money? What little things can I do to make sure there is fuel in my tank and that emotionally I am strong? My usual go to is to run but with this illness lingering that hasn’t been an option. And another outlet for me has always been being creative… but then since my work is all about being creative is that really me taking time out?

So this blog post is ending with questions rather than answers and hopefully by the time I write the next one I’ll have it all figured out, or at least some of it. How can I fit in self care, without the guilt? Answers on a postcard please.