A Taste of Summer in Winter

We set off in the pouring rain, heading north to our beachside destination. Three little boys in their pj’s and a mum trying to keep her stress levels down and energy up for a three hour, post rush hour drive through the night.

When we woke up bright and early the next day it was still raining but the excitement levels were high. We were staying with our friends and the kids all get on pretty well so they were very happy to see each other. There were short gaps when the rain stopped long enough for us to dash out for quick walks. We also dropped into the new local library where they had some great toys and a play area. The kids were occupied enough to keep them out of too much trouble. L’s screaming and circle running rev’ed the other kids up a bit but it was manageable.

N’s favourite book – cup cakes – YUM

Day two and the clouds were still there, but breaking up. We were hopeful. My friends and I usually tag team in the morning so that at least SOMEbody can get a lie in. So after an early breakfast I got the kids all organised and we set off on our morning walk, down to the playground which sits on the sandy cliff behind the beach. The running, walking and playing was followed by a little hot chocolate morning ritual at the cafe – something we did each morning to the delight of all kids.

My friend caught up with us at the cafe and we decided to risk taking the kids down to the beach. We didn’t have any supplies with us but oh well, let’s live a little dangerously…off we headed, down to the beach.

Oh the joy on getting down to the beach! The kids were leaping and bounding about like little puppies. They explored the rocks that had been exposed by all the rough seas. They got dirty, they got wet and as the sun started peeking through the clothes slowly came off. Soon they were all running around in the warm morning sun, bursting with the vim and vigour that a little outdoor freedom and a big horizon will give you.

It was so lovely to be able to see them so happy and free. In town you are always trying to keep them close (especially L who is a ‘runner’), but here, you could sit back and let them run, let them jump, let them feel some independence.

We weren’t the only ones who ventured out into the fresh, warming morning. The people who walked past us were all delighted by the happiness and exuberant whoops as these beautiful kids burnt off a ton of energy.

We were there for a couple of hours. I used every last tissue, wipe, nappy and clothing I didn’t know I had hidden away under the pram. We got back to the house just in time to feed some hungry little beasties followed by some post lunch snoozing. Ahhh! holiday bliss.

Late that afternoon we headed back to the playground. It was full of big boys, playing like boys do – lots of screaming, wrestling, commando moves, code words etc. Enter my boys. L had worked out a little circuit for himself that involved climbing up a ladder to the top deck of a play ship, then down the slide and around again. The smallest of the 10 or so boys who were there was playing up on the top deck as well and thought he’d make friends with my boy. He was probably about 6. This will be interesting, I thought.

Sure enough, as he realised that L was not responding to him in a predictable way, he started yelling at him ‘I can’t understand what you’re saying’. L, totally unfazed just kept moving through his circuit. The boy watched, and so did I. It could go either way at this point. Then he plonked himself down at the top of the slide so that L could not complete his circuit. L was being really good – making a bit of noise, but no hands, no pushing, just trying to get around this obstacle.

My friend made her way over to the bottom of the slide, just to be more of a presence. The boy was just starting to raise his hand up to L to push him away when her 8yo daughter suddenly appeared on the scene. She knew something was going on…’I’m onto it Mum!’ Within a few seconds she’d sorted it. The kid went down the slide, followed by L. It was resolved.

I love her for that moment. Beautifully handled.

The next day dawned and it was cool and clear as a bell. We had an absolutely beautiful day at the beach. The kids were in heaven. Their appetites for food and sleep went through the roof.

We had one last day there on Sunday (another corker) then headed home after dinner and baths.

What wonderful experiences for my kids.

One more week and we are back to school. Term 3. My grandmother taught in infant school for most of her career and she always said that Term 3 was when first year kids really settled down and started to learn. I’m hoping those words of wisdom are true for us.

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The Wednesday Girls

Day Five: Autism Awareness Month blogathon

Part Three of my autism mum story. See part one here and part two here

The Wednesday Girls were a group of new mums that I fell in with when L was a few months old. We got together every Wednesday at one of our houses or would go on an outing – swimming, playgrounds, bus rides. The kids had all kinds of fun and we would get to download, debrief, laugh, cry and work our way into some really solid friendships, sealed with the fire of a shared journey.

There were times when I felt like these women were saving me from drowning. None of us were perfect mothers by any stretch, not that there is such a beast. Some had been through fertility issues, others had horrible gestational conditions but here we were with these beautiful children. And over the years, the number of kids has grown quite considerably.

L was the oldest of this crop but only by a few weeks. So when the other kids would reach a milestone before him I was aware but not overly concerned as I know that every child has their own schedule to follow. The regular professional support I got through the Narby playgroup was reassuring. The therapists who see so many children come through the school, advised patience. It was going to take a little longer for my boy.

I do remember seeing one of the boys quickly moving through the crawling, pulling himself up to stand and then walking stages. I said to his mum Abby – your boy is amazing! He is so advanced! I can laugh now as I think back to this comment. Because of course, he was just totally normal, doing what most kids do within a month or two of each other.

Gradually, all the kids in the Wednesday Girls playgroup overtook my little darling. He wore the knees out of a lot of pants crawling for a full 12 months. I eventually had to get him some knee pads as he ended up with big callouses on his poor little knees. Still he was a happy, laughing boy with an engaging personality. Because of that the Wednesday Girls kids have become a wonderful neurotypical friendship group for L.

Wednesday Girls kids

It was around this time that his obsession with string began. He would gravitate towards anything with a string, anything that looked like or resembled a string. He had a particular way that he liked to fold the string and would do this over and over. My sister in law had given him a beautiful toy that was a block of wood, painted yellow and shaped like a wedge of swiss cheese. Attached to the cheese by a string was a little mouse. You could thread the mouse through the holes in the cheese. Not my boy! He got very attached to it and wanted that stringy mouse in his hand all the time. So as he would crawl along, the wooden cheese would swing through the air and thump down beside his hand. That was the start of me modifying toys for him. Of course I detached the string from the cheese. Oh happy day! That little mouse went everywhere in that pudgy little hand of his. Sometimes, being an extremely oral boy, he would pop that little mouse into his mouth to the shock and horror of some, who thought it may have been an actual mouse.

I had gone back to part time work as an arts bureaucrat. As L got a little older and it became obvious that I needed to give him as much as I could during these early years. I was juggling the work commitments, where the demands on the limited time I was in the office became increasingly overwhelming and a little boy who needed everything I could give him. Priorities!

I arranged to have a year of leave without pay.I knew that it would make a big difference to both of us. So it was with enormous relief that I was able to stay at home and start ramping up on L’s development.

I’ve said in other posts that I am the kind of person who likes to push the envelope a bit. I’m never shy to get in there when something needs doing. So, true to form I put my hand up to care for another child during this time.

Just before L was about to turn one, I had provided some respite care for a little baby girl who was waiting for all the red tape of the adoption process to be finalised. It was only for a few weeks, but I just loved doing this. So the week after I finished work, as I sat there twiddling my thumbs (!!) I took a call asking if I would be willing to care for a ‘pre-adoptive’ baby. She’d only just been born. She was a few weeks premature and was up in the hospital waiting for her placement with a foster carer while the adoption team did their thing.

I guess you know by now how I responded to this request. I was up at the hospital lickety split. It took about another 10 days before she was able to come home, but I was up there every day, giving her lots of love, feeding her, bathing her and giving Baby E as much as I could.

Some people questioned me taking on another child when L had a lot of special needs. Being one of five children myself, I felt that the benefits of having siblings far outweighed any possible negatives. I still think that I made the right call there. It’s why I have three kids in my care right now. But back to the topic…

At this point L was almost two. We had a wonderful Christmas that year in our steamy sub-tropic city. Lots of water play and backyard fun, visitors and family.

Assuming the position, post Christmas lunch
my sister and baby E

The new year started off great. L was finally walking and he was on a mission to make up for lost walking time. We walked every day. He refused to go in the pram. He just needed to walk, so we did. Sometimes he’d walk up to 3 kilometres before finally slowing down and stopping. We’d walk right past the playground – not interested. At all. Didn’t want to stop and look at the ducks or the water or the trees or the cars or the flowers or the dogs. He just wanted to walk.

At the Narby playgroup, they were able to access what they called ‘visiting teachers’ who have specialised skills in various areas. They organised for the teacher who specialised in autism to come in and meet L and myself. He wasn’t convinced that L was autistic as he was quite a social boy, especially with adults. But despite this, he was a great support though that year when a few more behaviours emerged and we started down that well trodden path of behaviour management.

I remember saying to one of the therapists in the middle of that year that I was pretty sure that he was on the spectrum. At that point, I had done quite a bit of research and I knew what the indicators were and the criteria was a pretty good match for my boy. Now that he was two & a half plus, the evaluation process could begin and the evidence gathering and doctors appointments became an even bigger part of our routine.

It may sound blasé now, but I didn’t care if he would be diagnosed as autistic or not. I knew that a diagnosis would not change him. He was still my little darling no matter what. I figured that if he did get the diagnosis, then great – we know what we are dealing with and can get on with it. If not, then also great – he’s not autistic, fantastic.

It would take almost a year before a diagnosis would be made.

My Optimism Is Bringing Me Down

I’ve always subscribed to the idea that being optimistic is the best, the only way forward. I like to see the best in people and believe that no matter how many times you may be disappointed by others, it shouldn’t stop you from staying positive about the future.

I also like to push the envelope when it comes to believing in what I can do, how much I can manage in my work or my capacity to love and care for the important people in my life, especially the kids.

I guess that’s why I have three kids and would love to have more – if I only I could get a few more hours sleep each night! Don’t worry people, I’m not going there (at this point anyway).

Every now and then I go over the line and end up scrambling to try to catch up or needing to delegate or bring in the reinforcements. Even then, that’s OK…you live and learn. I don’t mind making mistakes, so long as I’m trying.

Having a child with autism can quickly knock the wind out of those optimistic sails. The future is suddenly very uncertain. You are in for the ride of your life and you are most definitely NOT in the drivers seat. But the autism label does not change the child – they are still that little one you adore and love beyond limits.

After a while you get used to having that label. You get used to the meltdowns, the picky eating, the slow progress. Used to having to wait for cognitive processing, to still dealing with nappies and more poo than you would ever wish upon your worst enemies. Cos that’s your little darling inching their way through their milestones, getting there – despite everything, getting there.

So you stay focussed on the day to day challenges. You hear about a great program or a wonderful therapist or the amazing ipad or chewy tube or a babysitter who can handle your situation. You keep trying every possible avenue to help make their journey a little easier. You buy books, you download apps, you trawl through the internet.

But autism is not a sprint. It doesn’t even have an end point. You are in it for the long haul, so stamina is vital. You are the coach, the cheer squad and a co-runner. You are the marketing team, the walking brochure, the general manager and the bank.

Which brings me to the title of this little ditty. It’s been pretty difficult lately. Still I look towards the brighter future – we’ll get through it etc. I know it is true and I can see it happening before my eyes. The behaviour management strategies are working, the aggression is abating and we are having a nice time together.

I have the highest hopes for my little boy but I don’t want to be a deluded fool. I want to set realistic, achievable goals that help him to find his place in the world and I want my place in that world to be one that doesn’t involve hitting my head against a brick wall (metaphorically speaking). Possible? YES…maybe…don’t know.