One of the things I both love and hate about life with autism is that it can be so wildly unpredictable. From one day to the next or even one minute to the next, things can change dramatically. Our day can go from being happy, fun & exciting to being hectic, difficult and even traumatic.
I love that we can get lost in moments and play whilst giggling our heads off, I love that I can get kiss after kiss and cuddle after cuddle, I love that there’s an innocence about J and he’s not bothered by life’s standard troubles, I love that he loves me and I’m the most important person in his world most of the time!
I don’t love that he can’t cope with certain noises or busy places, that he doesn’t manage well if he needs to sit still or stay on one place (this makes weddings and similar events very challenging for him and us), that he can’t tell us what’s upsetting him or communicate some of the things he wants or needs and I certainly don’t love that he can become so distressed by things that he works himself up and ends up being sick.
Life with any child can be unpredictable, hectic, dramatic or at the very least changeable. Life with autism adds more unpredictability and drama. Something J does ten times can be different the eleventh time. We can’t ever take it for granted that he has learned or will remember things. One example would be walking to the park. He could listen and stop at the road on ten separate occasions in a row. This doesn’t mean that on the eleventh occasion we can allow him to run on ahead and listen for the instruction to wait or remember to stop at the road. This means always being on guard, being prepared for anything to happen and always assuming that the instructions will be forgotten or won’t be followed. Always better to be safe than sorry. As my mum’s gran always said ‘the only peace is eternal vigilance.’
Is this a common thing for others? What strategies do you have for helping your child or coping with the lack of consistency?
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J recently celebrated his sixth birthday. He seemed more aware this year that it was his day and that things were for him. It got me thinking about his thought processes and just how well I understand them and if I get it right most of the time.
When your child is non-verbal it can be very difficult and frustrating for both them and you. It is hard to fully understand what they want or need. Often it’s a guessing game of elimination to figure it out and finally give them what they are looking for. We have taken part in many activities, workshops and courses to try to help us to meet J’s communication needs, to try to support his development and to try to understand him and his world a little better. It’s been a long road with many ups and downs and bumps along the way. Being honest, we’re still on the journey and finding out new things as we go.
Firstly, the title is for effect. I’m not a big fan of the term ‘Autism Mum’ and only use it when it’s the only succinct way to describe what I’m talking about. I don’t mind other people using it, I just try not to use it myself. I’m just a mum. I have a child who has autism, so it is a big part of our lives. I’m not however a mum to autism, I’m a mum to my boy. I’m here to help him with his difficulties and celebrate his achievements. Not to label him and allow it to limit him as a result. Secondly, I use the word benefits in a loose, tongue-in-cheek way to describe the following list!
1. The ability to function on only a couple of hours sleep.
Most parents of young children will relate to this one. It’s the role of the young child to keep their parents awake or to waken them at regular intervals throughout the night. If you have more than one child they will usually take it in turns throughout the night to do this, thus keeping you awake for as long as possible with minimal disruption to their own nocturnal routines. If you are a parent of a child with autism, it’s likely this will continue long past the recommended time limit found with ‘neurotypical’ children.
I was sent two Bubble Bum inflatable car booster seats for review recently (I received the two products in return for this review but all views are honest and entirely my own). I had hoped to take them on our camping holiday but due to a postage mix-up they didn’t arrive on time. They would actually have made life when camping a good bit easier! The seats even came with two Bubble Bum whoopie cushions, which my boys loved.
Children’s seats are very cumbersome. It’s fine when they are sitting on them but at night, when everything needs to be moved to make room for sleeping, storing them suitably is not so easy. It’s great that the Bubble Bum easily inflates and deflates, making it easy to carry and store. It even come with its own little drawstring bag to carry it in. This would make it easy to take on other types of trip, like a plane journey, meaning you could use it in a hire car at your destination and avoid paying for booster seat hire. I loved the shoulder adjusting strap to keep the seatbelt in the correct position too.
Before agreeing to review I carried out some research into the seats, as my children’s safety is my biggest concern. It wasn’t easy to find official stats but I did find another website where they had tested it and been given the relevant info. The booster has passed both European and US safety tests. It even performed well when not fully inflated, as it has a memory foam insert to even out the air under your child and ensure it’s distributed evenly. (You can find the info in the bottom half of this post: The Car Seat Lady)
I also watched a You Tube video on how the boosters are correctly fitted. I was going to make my own to add here but the video from the makers is great and easy to follow, plus they are the experts in fitting so probably best to follow their lead rather than mine:
Bubble Bum Installation Video
My car is relatively small too. This means that three child seats cannot fit in the back seat and one has to be in the front as I ferry my children around. This makes it impossible for me to offer anyone else a lift. The Bubble Bum meant that I could fit one in between the two other seats and put all three kids in the back seat, enabling me to have my mum or mother in law in the car with me at the same time as the children and making it so much easier to get out and about. On a long term basis I would use the full seats but it’s a great thing to keep in the boot for emergency occasions when lifts are required!
Overall I was really pleased with the Bubble Bum and it’s certainly great for storing away in small spaces easily, meaning it can go under the seat for sleeping time in the camper. This means more space to store all of the other paraphernalia you need to carry to holiday with young children!
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This post was first featured on Meet Other Mums:
I’ve been thinking lately about the time my husband and I get to spend together. I don’t mean with the kids, or making dinner, eating dinner, clearing up, etc. I mean actual one-to-one, quality time together. If we are being honest it’s not very often at all. We are really lucky that my mum will keep the kids if we want to go out together but as she watches them all day whilst we are at work, we don’t like to ask too often! Mostly when we do its to pop out for a meal and back in time to bring them home for bed. I look at how we started off our lives together and how much things have changed since then.
My husband and I met when we were still at school, we were 17 and were together for over 11 years before he proposed. In that time we had a lot of great experiences; we went backpacking around Europe twice, visited New York, went to Las Vegas and saw the Grand Canyon (what an amazing sight!), enjoyed Florida and all it has to offer, graduated from university, started out in our chosen careers, had a fair few nights out and enjoyed weekends away in various cities across the UK and Europe. It’s fair to say we had a good time and enjoyed what we were doing. When we got married we moved to a Scottish island for a couple of years and our first two children were born whilst we lived there (though not actually on the island.)
When it was just us we had so much free time, lots of time to chat and share our thoughts; talking about what had happened that day. Time to listen to each other and give advice or support when needed. We had a tidy house and cars; enjoyed eating meals out together or watching films at night when we got home. It was fun. We were never really overly romantic but we enjoyed life and spent lots of time doing things together. When I look at our lives now I don’t see any resemblance to how things used to be. No sign of those two people. I’m not saying it’s terrible, just very different.
I find myself asking this question more and more lately. My baby girl turned one year old this week and I just can’t believe it. The first year of her life has passed by so quickly and she has grown into an increasingly independent and capable girl in the blink of an eye. She’s no longer my tiny baby. I had wanted that stage to last just a bit longer – she’s my third child and the last member to join and complete our family. I long for her little snuggly face and her lasting gaze as she was fed. I miss holding and cuddling her; with her not wanting to climb down and set off on her adventures. I wish for a few more times of her lying beside me and not wanting to follow her brothers around on their travels. That little helpless bundle has long since moved on and in her place I have an excited, happy, fun-loving almost-toddler who loves nothing more than roaming around unaided and unfettered.
I know it’s great that she’s so capable and able to do all of these things, goodness knows we were willing J on to achieve these things he found so hard. It’s bittersweet though. She no longer relies on me to help her get around and she even eats mostly on her own now too. She likes a cuddle but only for a short time, before she has more important things she would rather be doing.
Last week my mum celebrated her birthday. I agonised for ages over what to buy her before eventually just asking her what she would like. The reason I find it so hard to get something is partly because I want it to reflect how much I think of her, how much I appreciate everything she does for us and to show her how much she is loved. Is there something you can buy that truly shows all of that?
My mum is amazing. She’s always around, always a shoulder to cry on and a rock to depend upon. I honestly do not know what we would do without her. From when we were little she has always put my siblings and I first, herself last. Now that we have children of our own she does the same for them. My mum and dad look after our kids whilst I work. Without them I would have to give this up, as J wouldn’t cope with a child minder or after school club environment. Instead of relaxing, winding down and enjoying retirement my parents are back to doing what they did when we were young (possibly more, as they help with looking after all 7 of their grandchildren!) They are so great with our kids and I don’t think we will ever be able to fully show how much we appreciate it.
To help with the kids’ routine and mine, my mum picks them up in the morning and they get dressed at her house. This saves them being dressed too early and allows me to get ready and go to work. They are then ferried to their relevant place of learning or looked after by my parents through the day, sometimes until fairly late by the time I pick them up when I finish work.