Guest Post: When I Grow Up, I Want to be Like My Children.

I’m lucky enough to be on holiday at the moment. I’m hoping to write a post during my break, but so far, on day three we’ve managed to lose Monkey once, Madam has escaped from her cot (head-first) and we’ve had several smashed glasses in restaurants! Luckily we’re in a family friendly resort and there’s usually several children misbehaving at any one time, so we feel right at home!

I’m sharing a post that my dear friend Lizi posted last night. It’s from her blog Through Accepting Limits which you can find here. Lizi has four year old twins, J&L. They’ve been in our lives for only a year but it feels like we’ve known them forever. I strongly suggest you read and devour every word on her site. You’ll be glad you did.

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When I Grow Up, I Want to be Like My Children

About six months ago, L started to notice that J was “different”. She asked why he sometimes ignored her when she was talking to him. She asked why he always needed to repeat his daily scripts as we passed certain points when we were out in the car. She asked why he clamped his hands over his ears and shouted during tannoy announcements in supermarkets. She asked why it would sometimes take J a few minutes to answer a simple question; why he could not cope with making choices; why he would lay in bed screaming in the early hours of the morning; why he was obsessed with meerkats. She asked a lot.

At the same time J listened to L’s questions. Her enquiries meant that his difference, his “strangeness” was being pointed out to him. And whilst he made no comment I could see he was absorbing L’s questions. I saw the anxiety and confusion flicker across his face as L reeled off the ways in which he failed to behave like “normal” preschoolers. And I knew that my reply: “Because that’s just what J likes to do!” wouldn’t cut it for long.

So that’s when I first considered the idea of introducing the term “autism” to my 3-year-olds.
I initially broached the subject by gently introducing the concept of “disabilty” to them. L had only recently noticed that one of the presenters on CBeebies is missing the lower half of one arm. We had discussed some of the things she might find difficult and how others might be able to help, both practically (offering to tie her shoelaces) and emotionally (not saying mean things to her). And suddenly L’s world changed. Difference was all around her. She was, inevitably, full of questions. Why did that lady need to sit in a chair with wheels? Why did that man sound funny when he talked? Why did that big boy keep hitting himself on the head? Why did those people need sticks to walk? She very quickly grasped the idea that sometimes there will be part of someone’s body that doesn’t quite work the way it should, or work like everyone else’s. She understood that it might make life a little harder for that person, and that we should all do what we can to be kind and helpful to each other.

We talked about the infusions I do each week and she grew to understand that part of Mummy’s body doesn’t work like everyone else’s either – but that you can’t see it. L learned what an immune system is, and shouted angrily at her “fighters” to “make those germs scram” when she caught a cold. And finally we talked about J. I explained that whilst J’s body works fine (I’ll save the explanation of hypermobility for another day!), he sometimes thinks and feels differently to others. We revisted all of L’s “whys” and she started to put the puzzle together. J shouts in the supermarket because he hears everything really loudly and it hurts his ears. J sometimes ignores her because he can only think about one thing at a time. J screams in his bed because his brain isn’t very good at going to sleep. And gradually I introduced the word “autism”. At first it was hard to explain such an intangible condition. But then L would start to ask “Did J do xxx because he is autism?” (I still can’t get her to say he has autism!). Sometimes I would reply “Yes, I think J probably did xxx because he has got autism”. And sometimes I would reply “No, I think J did xxx just because that is what J likes to do”. Again, J listened and absorbed. And as autism by its very nature likes facts and answers, rather than intangible questions, J seemed at peace with the answers that were emerging.

And of course, we talked again and again about how much we love J, and how the things that make him different also make him very, very special. I knew I had overdone the “J’s autism makes him special” when L tearfully insisted that she is “a little bit autism” too. I didn’t protest too hard. We’re probably all a little bit autism after all.

And as time has gone on, “autism” has become just another word in J and L’s ever-increasing and hugely impressive vocabularies. It is simply another descriptive term. L has got blue eyes and curly hair, is very little, and loves to sing and make pictures. J has a wicked laugh and autism, is great at reading, and loves shapes and tickles. Sometimes J will refer to his autism and a little more often L does. Occasionally I have found it very useful in explaining J’s own behaviour to him, when he seems confused by his physical and emotional responses to different stimuli. But mostly no-one in our house mentions autism because no-one needs to.

I did not take the decision lightly to tell my children at such a young age that J has autism.

After I had done it I worried constantly about whether it had been the right thing to do. Their response reassured me to a certain degree. But it was a conversation we had today that finally left me in no doubt that I had done the right thing.

A little boy, B, has recently joined J and L’s class in nursery. B has autism. I know very little about him, but it is clear that he not at the same point of the spectrum as J. He is non-verbal and it seems that his autism is notably more severe than J’s. In the car on the way home from nursery today J suddenly said “Let’s talk about B!” I asked what he wanted to tell me about B and he said B had kept opening the classroom door today. I remarked that this was funny – B likes opening doors and J likes closing them. J said “Yes, B is like me!” A split second later came L’s inevitable question: “Is B autism?” “Yes” I replied, “I believe B has got autism”. “Oh!” said L. “That’s why he doesn’t talk!” Bearing in mind J’s verbal communication skills are excellent I was surprised she had made this connection. L went on to explain all the autistic traits B displays during an afternoon at nursery. I have to say her diagnostic observations are impressive.

Then L told me B had pinched her today. She said it hurt. I thought about my response before saying that I didn’t think B meant to hurt her or be naughty, but he still needed to learn that he mustn’t pinch people so L must tell the teacher if it happens again. Then L said something that brought tears to my eyes. I have reproduced her words as faithfully as my memory allows:

“Poor B” she said. “Maybe he wanted to be my friend but didn’t know how to tell me. I don’t mind that he pinched me. He probably knew that I would be kind to him because I know all about autism. If he does it again I will say ‘No B, pinching makes me sad. Do you want to play instead?’ Do you think that will make him happy Mummy? It must be very upsetting to not be able to talk or to tell people what you want. Maybe we should have a play date with him”.

Then J, who had been quiet for some time, added: “B has got autism like me. I will be his friend”.

If my children go on to climb Everest and win Nobel prizes, I can’t imagine ever being prouder of them than I was in that moment. At four years old they have openly understood and accepted difference and, through their own volition, considered ways to embrace it. They have shown empathy, compassion and kindness. The thought that B will grow up remembering the two children who offered to be his friend rather than shying away from him fills me with joy.

I have learned an important lesson today. I have been so busy trying to change the world so that everyone is loving and accepting and understanding towards J, I forgot that he has it in him to be all of that for another.

A year ago I could never have imagined being grateful for J’s autism. Now I am just starting to realise how many gifts it has given us. And the greatest of all is that it has made my children into the kind of people who wish to befriend a boy who might otherwise remain friendless. What parent could ever ask for more?

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Having A Word With Myself.

For the past couple of weeks ours has been a sick-house. For one week P had can’t-get-out-of-bed flu, and for the following week both kids had bugs too. This is, of course, no different to thousands of other families across the country in January. The thing is, though, is that their illnesses knock me for six. I don’t just mean that they pass their germs on to me (although I am writing this through streaming eyes with scratchy throat). What I mean is, psychologically, it takes a while for me to recover from the fact that they have been ill. The obvious reason for this would be that of course, any parent worries when their child is ill, even if it’s just a nasty cold. Having sick kids is stressful and exhausting and generally pretty horrible. As mums, our own needs are usually pretty low down on the priority list and when your children are sick, this is more apparent than ever. For me, I can live without an uninterrupted wee and deal with not getting in the shower until 2pm. Their needs are more important, particularly when they’re sick. And as soon as they’re better, in theory, things go back to normal.

Or not.

I’ve mentioned before that I consider myself to be “in recovery” from my depression, in that it’s a constant work-in-process that I need to remain aware of. One day at a time. There are thought processes and strategies that I use to keep myself on the upward bounce as much as I can. But I find that in stressful times and particularly when there’s been illness in the house, I don’t get the chance to pay attention to my own emotional wellbeing and this can take me down a slippery slope.

So the purpose of this post is to have a word with myself in order to get back on track. Contradictions will follow, I’m afraid! That’s how my mind works.

When I was getting professional help with my depression and anxiety (which I highly recommend. Getting help, that is, not the depression or anxiety. That really sucks) One of the things the counsellor repeated regularly was this: “Rachel. It is what it is.”

Let me explain….

I struggle with overcoming the notion that I have no justification in feeling depressed; I have two beautiful children, an amazing husband and the support of my family and friends. There is a roof over our heads, clothes on our backs, food on the table and countless other blessings. What right do I have to be depressed?

I have a strong tendency to compare my circumstances with others who I feel have far more reason to feel low. I have friends who have recently suffered through bereavement, infidelity, miscarriage, divorce and serious illness. And that’s just people I know. Don’t start me on the pain and suffering out there in the wider world.

Drawing these comparisons can leave me feeling self absorbed, selfish, ungrateful and ridiculous. None of these feel good, let me tell you. So I remind myself that my own struggles are no less valid because others have suffered more. Telling yourself you can’t feel sad or upset about certain things because others have it worse is like saying you can’t be happy because others have it better than you.

Depression is chemical. My brain doesn’t produce enough serotonin to keep me on an even keel. This is simply not something I can control. (More on the subject of control on future posts). The same way that a diabetic can’t control their body’s insulin production, I can’t control the fact that primarily, the cause of my depression is chemical and physical. It “Is What It Is”. All I can do is be aware of it, “own” it, recognise what triggers it (like sickness in the house and letting myself get tired and run down) and use the tools at my disposal to manage it.

Luckily for me, on the whole, the good days far outweigh the bad and there is one quite simple tactic that I use which really helps me keep things in perspective, and that is practicing gratitude whenever I can. Because I really am grateful for what I’ve got.

In writing this I’m concerned that it’s going to come across as a bit sugary or cheesy. But It Is What It Is, it helps me be a happier person and maybe it’ll help someone reading this too. So I make no apologies.

Here’s an example;
A few minutes ago, I surveyed my living room. There are toy bricks EVERYWHERE. There are play-doh crumbs under the table. There are very small handprints all over the patio doors. A half-built train track lies abandoned in the kitchen waiting to trip someone over. A little pile of clothes shows me where my strip-o-gram of an eighteen month old daughter has stood and removed all of her clothes. Just because she can. She doesn’t care that it’s snowing out and she’s recovering from a nasty cold. My house looks like a bomb has hit it.

I can look at this situation in one of two ways; I can grumble and moan about the mess or I can smile, thinking of Madam’s excitement and pride at the big tower she built by herself, hence the bricks everywhere. I can be grateful for the toys we have that keep the children busy whilst I jot a few ideas down for this article. I can be grateful for the children themselves, that they’re better now. That they’re up to their usual mischief. That they’re well enough to climb the walls.

Another example, and one that I cringe a little bit about sharing, but I’m going to anyway, is the ironing. Boring subject I know. I LOATHE ironing. But at least once a week (ideally, but rarely, more often) I stand and I work through the enormous pile of ironing. I often huff and puff and complain about this. It’s categorically the dullest activity ever. But what I try to do, whilst I’m ironing, is be a tiny bit grateful. Grateful for the little ones who bring the clothes to life. Grateful for the fun times they spend wearing their clothes. Grateful for the job my husband has that requires him to wear a shirt each day. Despite the ironing it necessitates.

Similarly, when washing floors and cleaning mucky little handprints off a surprisingly varied array of surfaces, I try to be grateful for those little hands and feet. I try to remind myself that whilst raising (and especially cleaning up after) little ones is hard, one day they’ll be grown and gone. And I’ll look back on the days of smeary windows and crayon wall graffiti with nostalgia. And I’ll probably wish that I’d spent more time enjoying them and less time worrying about cleaning up after them.

And every so often, when they wake in the night, I might sit and hold them for a few extra minutes, and be grateful for them. I’ll hold them a few extra minutes after they’ve fallen back to sleep. I’ll drink in their sleepiness. I’ll try to forget and forgive myself for those dark early days and nights where I wanted to be somewhere or someone else and I’ll remind myself that they won’t remember. I’ll be grateful for the fact that I am able to be grateful. Because if I’m feeling grateful, then I’m feeling better. And now that I’ve finished writing this, I’m feeling a bit teary, but I’m feeling better. And I’m grateful for that, too.

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Picture credit: http://www.bravegirlsclub.com