Jude
The last few weeks have been really hard for all of us, and even more so for you. I hate seeing how anxious you are every single day at the moment.
Your autism seems to be even more challenging for you than usual.
I wish you could explain to me what’s going on inside your mind so I can help you.
Why is it that even just the sight of your brother upsets you so much at the moment?
Why is your first reaction is to start crying and hitting yourself over and over, even when he’s taken out of sight?
We’re doing our best to try and make your environment as stress-free as possible. It’s difficult. Your brother lives with us too, and he has his own challenges to deal with. Somehow we need to find a way we can all get along again.
Then in the midst of all this, last Sunday was one of the best days I’ve ever had with you.
I had such a great time I had to write it down so that we never forget it.
It was a sunny, crisp autumn day, so I thought it would be a good idea to take you for a walk along the river. If we managed to get that far then we could carry on to the park. It would be some well needed time outside of the house, a chance to get some fresh air, some time away from your brother.
The last walk we’d taken together a couple of weeks ago hadn’t gone to plan. The noise from the motorbikes that went past were too much for you, and you started to hit yourself in the street. You shocked a few people walking past that day. I don’t think they could understand what was going on. Seeing a 7-year-old hit himself is not something most people are used to, but that’s ok, it’s what you felt you needed to do in that moment.
It was my fault anyway, not yours. I should have been more prepared and brought your ear defenders with me. We’d had so many good walks over the summer without them, I forgot how much you need them sometimes.
On Sunday, I made sure you had them on, and we set off together, hopeful that today’s walk would be a good one.
We walked down the street next to our house, kicking the recently fallen leaves along the pavement, laughing all the way. You love doing that, especially now they are starting to be more crisp, as they make a great noise as you kick them. You kicked them in front of you for a while, then decided you had to kick them all off the pavement into the gutter. I loved playing this game with you and seeing that huge smile on your face.
Every so often you stopped and leant up against a car. This happens a lot whenever we go for a walk. You’ve always liked looking in the windows and tapping on them.
Sometimes you’d turn and look at me as if to say “Come on Dad, open the door.”
But not every car is our car, I can’t just get in and take you for a drive. I know how much you love going for a drive and listening to music, but today we’re making the most of the sunshine.
On our route, every house on that street has a front garden, which presents huge temptation for you.
I know you too well. I can sense your eyes light up as you spot the small stones they have on their drives. You’re desperate to scoop them up in your hands and play with them. Sometimes I’m too slow and you manage to get a handful.
I never want to stop you having fun, I know just how much you love to throw stones around. The satisfaction you get in juggling them around in your hands before flicking or throwing them away. It’s a real sensory need you can’t seem to control whenever you see them.
But parked cars, house windows, and throwing stones just don’t mix. So I have to encourage you to reluctantly let them slip through your fingers. You comply quite happily, but you’ll also try again a few seconds later when you see the next patch of stones.
It’s not just the stones that are a big attraction for you, there’s also the flowers and plants you try to behead whenever you can get close enough.
Unfortunately, other people might not understand your overwhelming need to rip them off. They’ve spent a lot of time, effort and money on their gardens, and wouldn’t appreciate you doing that.
I know you’re not being destructive or naughty. You love feeling the petals on your lips, chewing them, and flicking them away after you’re done. But this isn’t our garden, where I can let you get away with it. Whenever you’re too quick for me, I silently hope that no-one is looking out of their window, catching you with the head of their roses in your hands.
When we reached the end of the street I made you hold my hand for a few seconds as we crossed the road. I know it’s uncomfortable for you, that you want to pull away, but I need to keep you safe from any cars that might come past. You’re not aware of traffic and roads, or how dangerous they can be.
You’d happily gallop across the road, not once thinking to stop and look, danger doesn’t enter your head.
But that’s ok. One day you will, and until then I’ll always be there to hold your hand and keep you safe
Once we made it across the road we were able to walk along the river instead. I could relax for a while then. There’s a wall keeping you away from the water, and a wall the other side, so I don’t have to worry about you running off towards any harm.
You spotted a couple walking along with an ice cream, so you doubled back in their direction. You walked straight at them and reached up to grab their cones
It doesn’t matter to you that it was their ice cream, it never does. Anyone’s ice cream is fair game to you.
They were polite and smiled back at you as I cracked a joke to try and ease any tension they felt, whilst guiding you away from their ice cream.
You’re 7 now, most people would expect you to know you can’t take a strangers ice cream. But you don’t, and that’s fine by me. Your complete innocence makes me smile. One day you will understand more, and until that day I’ll happily keep apologising for you
We walked for a while longer. You stopped and gazed over the wall at the river longingly. Every time you see water you want to get in, you always have
ever since you were a baby. Every bit of open water is just a big swimming pool in your eyes, and I know how much you love to swim.
Maybe you were thinking back to the times we’ve been on a boat up and down there. I’ll try and get you back in one again soon I promise
We set off again and walked all the way down to the park, happily flapping away as we went. We took a seat, you on the floor, me on the wall, as you’d found a patch of dried earth and small stones. Finally, you were allowed to play with some stones!
You sat for about 20 minutes, giggling to yourself as you juggled the small stones around in your hand, flicking them away every now and again. I positioned myself so that you threw them towards me, and not the people walking past. They probably wouldn’t have appreciated stones and dirt flying towards them, so I’m happy to let you flick them at me instead.
Suddenly, you looked over to the grass and you were off, sprinting away. I chased after you, wanting to let you be free, but also needing to stay close by just in case. You’re getting big now, and much faster. Daddy’s going to have to get fitter to be able to keep up with you.
Then you stopped and dropped to the floor, something had caught your eye.
The grass had been cut. There were trimmings strewn out everywhere.
You sat down and picked up handfuls of the freshly cut blades. You gave them a quick sniff and threw them up into the sky. You laughed as they floated off in the wind.
I sat with you and we threw grass at each other. I threw it as high as I could, and you watched on with a huge smile. God, I love seeing you smile.
Every few minutes the excitement was too much, and you jumped up, ran around, with me chasing you all the way. Then you’d stop, and drop to the floor again having found a new patch of grass to play with.
After doing this 5 or 6 times you settled down on the hill that looks down to the skate park. You sat there playing with the grass, but this time something else held your attention too. You were fascinated by what was going on below.
There were 4 or 5 children zipping up and down on bikes and scooters, doing jumps on the ramps. You had a constant smile on your face, flicking your attention between the grass and the other children.
I’d love to know what you were thinking in that moment. I wonder if you looked at them and thought about the bike they’ve been trying to teach you to ride at school?
I sat next to you, playing with the grass as well, watching you watch them. We were there for half an hour without moving. I’ve never seen you so taken in by something that wasn’t on a tv or an iPad
One day you’ll be able to go down there and join in. I’ll help you learn how to ride a bike, skate, scoot, whatever it is you want to try, and even give the ramps a go too.
But if all you want to do is watch, that’s ok. I’ll sit right here with you and throw grass cuttings around instead. If doing this for an hour is what makes you happy then that’s fine by me, I’ll be here right next to you, for as long as you want.
When you were ready we got up, chased each other for a bit longer, and headed back towards the river. We went back the way we came, back past more random strangers with ice cream. Back past the parked cars. Back past people’s gardens, full of the temptation of flowers and stones, all the way back home.
All in all we were out for over 2 hours, a smile on your face the whole time. I think this is a new record. It’s one of the best times I’ve had with you, I’m glad you had so much fun.
One day this will just be a regular day. You won’t feel so anxious 24/7, and when that happens you’ll be able to tolerate your brother again, just like you did over the Summer.
One day the world will no longer be such a tough place for you to be in. You’ll be able to tell me what it is you want to do, and we can do them whenever you want.
One day we’ll read this together and smile at how such a simple day together brought us so much joy.
One day
x
James, this is a really lovely storey for your diary. It gives us all a little insight to your boys problems and helps us understand what they are going through. You are doing a fantastic job James, keep it up. I know all the family support you as much as they can
Much luv, Christine xx
Don’t underestimate the average adult’s belief that a seven year old would want their ice cream. I say the cut off is more like 12. 🙂 Love how you’ve written this, narrating your thoughts. I hope you and C realize how inspirational you both are as parents. I could never compare my role as a parent to yours, but I do experience trying times too, and when I do, I think of you and C for strength.
Author
Ha ha, if 12 is the cut off I don’t feel so bad now. Means we can get away with it for another 5 years!
As always thanks Nadia 🙂
I recently came across your blog. I read this post and had to write a comment as it is the first time I have ever read about a little boy who enjoys such similar things to my own boy. The playing with little stones, picking them up, studying them and throwing them down again, going for other people’s food because he doesn’t understand the difference between his own food and someone elses food and the de-heading flowers…particularly in other people’s gardens and on walks! Plus getting to the park and finding a patch of earth to pick at for stones instead of playing on the equipment. This is my son exactly! It is great to know there are others out there who have the same view of the world and parents who are going through the same thing. I love your attitude and with the help of Son-Rise we too are much more hopeful of the future and able to view the world through their eyes! Thanks for sharing your story.
Author
Hi Lois. It’s great to hear there is someone else out there who has similar interests. Who needs a playground when there are stones and flowers to play with instead!
Thanks for your kind words, it always feels so worthwhile when I’m able to connect with others going through similar experiences. I’m glad you’re so hopeful about the future, just remember our attitude is the key to everything!
Just love reading your blogs James and seeing your boys faces lights up my day please keep writing…..
Much love to you all xxx
Hi James. I’ve finally gotten around to having a nose around your blog. I loved this post about Jude – realistic but hopeful, and your love for him (indeed, for both your boys) really shines through in every word.
Author
Thanks Tim, glad you enjoyed it 🙂
James, this post had me in tears. But not in a sad way. I am so glad I started my linky and discovered your blog, whilst Hayden & Jude are very different, there are so many similarities and your words are so comforting. Knowing that there is another parent out there that really gets it, wishes for similar things and takes great pleasure out of the simple things in life. Reading your post has also reminded me that sometimes I should have more patience and accept some of the things Hayden does, that aren’t necessarily socially understood. It’s what makes him happy after, all! And who am I to stop him when he spends 4 hours playing with dirt in the garden?! I may even plant some flowers in the spring and let him pick away! xx
Author
Wow, thank you Clare. I’m glad it made you have that reaction, I’ve found it so important to find other people who get it too, so I’m glad I’ve found your blog as well. Patience and acceptance are just 2 of the things my boys have taught me that are so important. It’s not easy to remember that 24/7, but as long as we keep trying we will make the world a better place for them to thrive in. I hope you do plant some flowers for Hayden!! 😉