Blowing bubbles and other simple things.

I’m a bit of a fan of the simple things in life.

I like sitting in the sun with a cup of tea and good book.

Nothing makes me happier than the sound of my children giggling.

I love the smell of freshly baked ANZAC biscuits.

Rainbows make me smile.

It’s a bit kitsch, I know but it is true and I like to encourage this love for the simple things, the little things, in my children. I have found, over the last few years that doing simple things can help my son regain his calm, help me regain my sanity and help us all appreciate our world a little bit more.

The other night my son and I lay out on the lawn and just stared at the stars. I felt the tension melt out of both of us as we lay side by side and took in the vastness and brilliance of the night sky.

Simple touch activities are also calming and when the day has been a series of medical appointments and physio exercises and bus trips we all benefit from a bit of time with our hands in the split pea bucket, or making patterns in shaving foam, sifting sand in the sand-pit or rolling play-dough. I’ve noticed that quite often at playgroups it’s the mums who really enjoy the play-dough and painting. It’s calming and gives you a chance to let your mind wander while your hands fiddle.

One of the things I love most about appreciating the simple things is that it tends to be quiet too. Both my kids work best when it’s quiet. In the absence of background noise they will both start humming and singing their own little songs or chatting away to me and at those times I feel like we are most strongly connected.

My son will ask me about God and the universe and all manner of things and I am constantly amazed at his curiosity and depth of wonder. My daughter will take in everything around her and I can see on her tiny face that she is savouring sensations and learning and growing all the time.

When we have quiet outside time my son will watch a line of ants for what seems an impossibly long time for a four-year-old. My daughter will sit and examine a flower before finally deciding to try and eat it.

And when I bring out the bubbles their faces light up.

My daughter, at fifteen months old, bounces up and down on her little bottom, chanting “bubbles! bubbles!” and as I begin to blow we all settle in to watch this simple wonder.

Bubbles always make me smile. They’re like a little bit of magic, yet a magic that is so easy to do. Sometimes, on really hot summer days, we lie on my bed in front of the fan and blow bubbles there. They swirl around in the air and look like they’re dancing.

Yeah, bubbles make me happy.

They're small and simple and pretty and they keep us all calm in a busy world. And there are so many simple things out there to experience, so many ways to take time out, to relax, and to teach our kids to relax too.

So here's a mission, if you read this. Find a simple idea. Do it. Connect with your kids.

Then tell me about it so I can do it too.

Cheers.

Maybe he has SPD?

Today, as we watched our son attempting to keep up with the other kids as they ran across the church lawn, all dressed in various super hero costumes, my husband leaned in close to me and whispered: “I love our boy. He’s so special.”

I had to agree. Our little boy, just turned four, is incredibly special and is determined to have fun despite the things in life that hold him back.

My last post touched on the fact that my one year old daughter has been diagnosed with Spinal Muscular Atrophy (SMA). She cannot walk, or crawl, or do most of the things we all take for granted. She is determined to live life despite the odds as well.

My son can walk and even run, albeit rather slowly and awkwardly. He is a really cute looking kid and very intelligent. At a glance he looks completely “normal”. His battle happens out of sight for the most part.

My little boy has something called Sensory Processing Disorder (SPD), a condition related to his Ehlers-Danlos Syndrome (EDS). EDS makes his joints loose and his muscle tone low, hence running, jumping and generally keeping up with the other kids is hard for him. We cope with this, and we generally cope with it quite well. He wears orthotics and we see an Occupational Therapist each week to work on his fine motor skills like cutting with scissors, writing and drawing. SPD is the real struggle and it’s a disorder that doesn’t get a lot of press.  

SPD Australia writes that, “people with SPD misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.”

For my son, the world is a very full-on place. He can’t cope with loud noises like the vacuum cleaner and he freaks out at the sound of a dog barking. He can’t stand anything he considers “hot”, so food has to be basically room temperature and his bath water needs to be tepid so that he doesn’t freak out. It took a long time for him to be able to go into water at all and he is still very nervous of the beach and can’t cope with water on his face. He struggles with toilet training and with knowing when he’s hungry and thirsty. Overly bright rooms make him freak out and parties send him into sensory overdrive. 

Some days can be really tough.

He’s an emotional kid too and the smallest things can set off a melt down because he perceives the emotions of others and interprets their actions and then his brain magnifies them and he experiences all of that emotion and has no way to let it all out. 

I have to remind myself quite often that despite his intelligence he is only four years old, which is very young, and that he needs to be treated with a great deal of empathy and gentleness. 

Now, this isn’t a blog of self-pity, it’s a blog of ideas and I am on a mission to raise awareness of SPD. I’m not necessarily a fan of labels but I’m definitely not a fan of people interpreting my son’s behaviour as “naughty” or “acting up” when really he’s in sensory overload and can’t regulate his behaviour due to unwelcome stimulation. 

So, how do I do it? How do make people more aware of what life is like when you have SPD?

My first idea is to simply tell people, up front, that his behaviour is due to SPD. I think I need to make a pamphlet to give out, informing people of SPD and what it means for my child. Of course sometimes it isn’t appropriate to go around telling people all that information and then forcing a pamphlet on them so my second idea is for a couple of t-shirts with the words Sensory Processing Disorder printed on them in big letters. That way people can ask me about it and then go away and do their own research.

My third idea was write this post, letting people know a little more of what life is like for people who live each day in the sensory minefield of SPD. Check out the website www.spdaustralia.com.au for more info and feel free to ask questions.

My final thought for the night is that raising a child with this condition has made me more aware and understanding of the behaviours of others. Some days my son can be very challenging and if I am not at my best I can lose my patience with him. On those days I need to give myself a time out with a cup of tea and a sweet biscuit. 

Before I had kids I thought that ratty kids were the result of bad parents or were just bad eggs. I thought the parent who lost patience was just an angry person who needed to remember to put their child first. I thought the kid who collapsed into a “tantrum” at the shops or a party was undisciplined or being manipulative. Now I know better. Now I think, “maybe they have SPD too.” 

I don’t use the word tantrum anymore because my son isn’t “throwing a tantrum” he’s having a melt down and he can’t help it and I find that if  I treat the “tantrums” of others, children and adults alike, I don’t get as annoyed with people and I have more empathy.

My son eventually caught up with the other kids, his superhero cape streaming out behind him and his winning smile lighting up the garden. He didn’t come in first but there’s  a good chance that he was the happiest kid out there. He felt the wind on his cheeks more strongly, the thrill of the race more fiercely, the desire to reach the finish more powerfully. He felt the joy of running with a keenness that many people never will.

My son has Sensory Processing Disorder and it does cause a fair amount of disorder in our lives but it’s also one of the things that makes our little boy special.

And I feel that his empathy is his greatest asset. 

Diagnosis Day.

On Thursday June 7th, this year, my daughter was diagnosed with Spinal Muscular Atrophy. 

I’ve been meaning to write this post for the last month. I wanted to put this out in the world so that when other parents get the same diagnosis for their children they can read about how we felt and know that the way they feel is ok. I have found it incredibly hard to find the right words to describe the experience, have written it out in my head a couple of times but have never gotten to the point of typing it out.

Here goes.

When your child is diagnosed with a condition that is not only degenerative but will likely shorten their life and, before it takes their life will take their ability to sit, move, eat and even breathe, it’s ok to grieve.

It’s ok to grieve for dreams that must be given up. It’s ok to grieve for what will never be. It’s ok to grieve for what will be and for what may be. 

I have grieved for the dream of my daughter's wedding, of watching her walk down the aisle on my husband's arm. I know that marriage may not happen for her, for so many reasons, and that grandchildren are very unlikely, and this hurt deeply in ways I wasn't expecting. I kept my wedding dress in case she wanted to wear it some day. I kept home made baby clothes for her children to wear one day. I keep them still but for different reasons now. I hope that even as old hopes die, new ones may be born.

It’s ok to grieve, and it's ok to grieve multiple times, for new things and old things and in different ways. Your child’s disability and the consequences of their condition are something that you will carry around with you for the rest of your life. It won’t go away, it may or may not get easier with time. It’s ok to return to grief when you need to and for grief to resurface as circumstances change.

But you can’t live in grief.

Because you have in your life, a living, breathing, smiling child who wants you and needs you and loves you.

The necessary companion to grief might therefore be joy.

Joy is different to happiness. There can be joy in pain, joy in struggle. It is a deeper, more long-lasting emotion than happiness. 

There is intense joy in watching my daughter do the things she does well. I watch her scribble with textas and note how well she grips. I watch her stack blocks. I watch her pretend to feed her doll. I watch her drink for a toy teacup. I marvel at how dextrous she is.

She babbles away and points at things she sees follows simple instructions like “put the block in the box” and I marvel at how connected she is with her world and how much her bright little mind is processing. 

I marvel at the love she displays for her family and friends. She is affectionate and open and charming. 

There are a lot of things that she will never be able to do and I think about those things a lot. We spend a good portion of the day doing gentle physio and exercises to keep what muscle tone she has and in my head I have a check list of activities which will each target a specific area, like leg strength, standing, torso strength, range of motion, arm strength, reach, rolling, posture, joint straightening, head control, and more, while trying to incorporate imaginative play, art, outside play, exploration and the puzzles and building games she favours. That’s all in my head, and sometimes I worry that we aren’t doing enough, or worse, that I’m pushing her too hard, but when I am interacting with her, my focus is on praising her and letting her see the joy I feel at her achievements, at her joy.

Joy and grief.

If I could add one final thing it would be: don’t forget your other children. My son is a sensitive and intense boy. He picks up on the emotions of others even at the best of times and he magnifies them. This last month has been a roller coaster for him and despite my attempts to shield him from my grief, my husband’s grief and the emotions of our families, he has felt it, and at times it has left him bewildered, scared and down right angry. He has needed me this month (and in the months leading up to the diagnosis) to show the joy and love I feel for him too. He has needed me as a safe place to fall, as a safe place to crash into and rage against, as a safe place to come back to when the rage is finally spent.

As focused as I am on providing the highest quality of life possible for my daughter, I refuse to let my son feel that he less loved, less noticed or less important.

It’s a hard task.

You need to be kind with yourself. You need to go at a marathon pace rather than at a sprint and you need to be aware that the race track could change direction at any time.

I have really only just begun this journey but these are some of the things I have learned so far, in the wake of the diagnosis, the D-day that changed our world forever.