My little sweetheart and I had our first successful (and extremely enjoyable) cafe outing today. He’s never been able to actually sit still long enough due to sensory issues for me to take him to a cafe. Today we sat together for 1/2hr in a normal chair
and I had to tell him it was time to leave! I can’t tell you how proud I am of this little guy x love u Joey x(AND mummy got to relax for once!!!)(BTW- he’s staring at all the artwork on the walls, just loving it! I think that’s what ultimately helped keep him occupied- lots to look at!! Lol)
Mum captured this the other day, the words are getting clearer every day it seems. Can’t tell you, this is more than music to our ears…
With all the info out there about how ‘different’ our children are and even being labelled with a ‘disability’, it’s so hard as a parent to stay away from the mentality of trying to ‘change’ your child.
Every day I work with the idea that today I’m going to ‘add to’ my sons abilities, not try and change the way he already is. He is beautiful and unique just as he is. Some of his ASD traits add to that, so why would I want to change who he is obviously destined to be? There is a lot to be celebrated about the person he is! There’s lots I don’t want to change about my little fellow in all his quirky ways, he’s definitely not a boring soul to be around! I like quirky. Always have. I’m rather quirky myself. Mainstream has always bored me personally. I’m sure my little fellow may share my view as he grows.
No, change is not nesessary. There’s lots I, as a parent, can bring to the table though. Skills we can add and enhance. That’s what we work on, building. Not changing. Changing suggests replacing or that something is broken. It’s a negative, fearful concept to me, not filled with love and acceptance. And these children know when you’re trying to force or change them. They sense the energy is different. Gentleness is not at the forefront of your lead. ‘I love you just the way you are’ is not singing through your eyes.
There can be no other place to begin than acceptance. My sons ASD isn’t going to go away. Many times I wished and hoped it would. But then I am denying HIM. Joe is bigger than his diagnosis. The diagnosis does not really matter. It can make you miserable if you let it and miss the beauty of your child. Don’t focus on it. Focus on what they love. Focus on what makes them laugh and smile. Join in with them and mimic them, even if they’re just repetitively humming if that’s what they like to do. Joe does, so I hum with him, and SNAP I get eye contact and smiles. He loves it when I play his way. Now he likes to play my way too sometimes! Because it’s all about love and fun. No judgement. No ‘he shouldn’t be making that noise and I shouldn’t encourage him’. Poppycock. News flash: he’s going to do it anyway whether you ‘approve’ or not. So USE it. It could become your best way ‘in’. We’re ‘adding to’, not ‘changing’ remember? They will change anyway. In their own time. The more skills you ‘add’ to their bow, the less interesting the old ones become. The new ones become far more interesting in the end, as they fit more comfortably and gain more confidence. You can’t go wrong with love. To be loved as they are is all anybody wants in life. Their anxieties and fears will melt away the more they trust you and they realize you’re not out to tear their crutches out from under them. That would scare anyone. Let them drop them as they are ready. I never forced Joe to stop spinning things. In fact, I always had something on hand for him wherever we went. I knew it relaxed him. But once he’d had enough he’d pop up and look around for a while. That’s when I’d show him some new stuff. Then he’d go back to spinning. I don’t remember when it happened but one day I noticed he hadn’t done it for ages. Occasionally he’ll still get the bowls out the cupboard like revisiting an old friend, but he gets bored and it only lasts a few minutes. He’s getting his visual needs met now in other, more functional ways. Educational videos, jumping on the trampoline, a disco ball in his room, looking at pictures in books…. I’ve just given him more options that appeal to his sensory preferences and needs.
It goes back to the old saying, “If you can’t beat ’em, join ’em”. Quite literally! You won’t beat Autism by running head-long into it. But we COULD go around, it by working WITH it 🙂
Along our travels we bumped into some ideas around video Modelling for kids on the spectrum. Some people using home videos of themselves and family members demonstrating social scenarios using basic, appropriate use of language. Many have reported it reached their child in a way nothing else would. Like an ‘instructional video’ that a child could refer back to over and over again if need be. Not only that but the repetitive exposure was fast-tracking progress and development that daily hands-on exposure, which is increasingly labour-intensive for parents, could take much much longer to develop.
We have been using video Modelling in various forms with Joe for around 10 months, and the results, though slow to begin with, are now staggering. Because Joe needs a fair amount of ‘visual’ stimulation, watching a screen was a very easily digestable way for him to take in the informatio of language and social etiquette he was missing because of his ‘lack of interest’ in us. Initially, it replaced his sensory need to spin objects to get his visual stimulation, but this way he was actually learning something else in the process. Eventually, he started to join the dots. I would sit facing him while he’d watch the videos so he could see me also reenacting or supporting what was on the screen. It became his ‘point of reference’ which was easy to refer to rather than take up with humans straight away which was a little more scary, fast-paced and confusing. Piece by piece it has helped him put his world together around him, and fast-tracked his language comprehension. So far, he has demonstrated that he has learned what most animals are called, the noises they make, what objects are called, concepts such as open and close, up and down etc. because videos can explain and show a concept where as a photo or snap shot can not. I’ve also videoed myself using Joe’s toys to literally show him how to play with them and give him ideas as to what they are for. Most times joe wouldn’t play with the toy as it was functionally designed. He would just find a way he liked to play with it to suit his sensory preferences. Once he could be shown in a way that was respectful and unintrusive to him, he mimicked the ‘correct use’ of the toy voluntarily. He’d enjoy it and get a great sense of confidence from it which helped him build ideas around how other toys might work. It was, and still is, exciting to watch. But I have been part of it every step of the way. It’s not a case of just standing back and letting him watch videos. It’s the order I have presented them to him in, scaffolding and building concepts that flow on from one to another. Grouping them so they associate with each other, such as a video with pictures of faces of family members and their names. Having a theme, or a point of reference from a video that he already knows so he has something familiar to work with and build on.
I’ve used a program called Gemiini coupled with our own personalized videos. Gemiini is an online program designed by a family who used this method of discrete video Modelling with their children who are on the spectrum. You can piece together your own videos based on your child’s own interests from a video clip catalogue they have uniquely designed for general concepts. They suggest a minimum of 6 months of exposure before you decide whether it’s working for you or not. I would have to agree as Joe is only just now starting to show us how much he’s learned from them over the past 10 months.
Like everything, it’s another angle and another tool in your bag. I’ll attach some videos to demonstrate some of the awesome outcomes I’ve managed to capture on video lately through this method.
Working on topics such as DVM (Discrete Video Modelling)…. Powerful tool!! AND Biomeds and Gluten/Dairy/Soy free diet to support learning and language 🙂 Scary topic for parents of these sensitive kids because things are tricky enough already right? Don’t worry, I’m not going to get too scientific and heavy, but there are a few things that can really make a difference and it might be a bit easier than you think…
Oh…and MIRRORS! Where to have them available to maximize the benefit this simple tool has to offer.
We’ve been using all the above and the results we’ve seen with Joe…. Well, he’s growing and trying new things every day AND the words are happening! Hope this is helpful to anyone else who is interested about what else might coming up and what to check back for along the track 😊
The following was written on Facebook by my mum today. We all witnessed something surreal today, and priceless. Joe used a full sentence in perfect context with my mum as she greeted him today when she visited our house. A small celebration is going on inside of me right now…..(Joe, 3 + 4 months old, ASD)
Today was a very special day for me, I had my first conversation with my grandson Joe and it was totally initiated by him. I had him in my arms when he said “Grandwah, hello, how are you today” then proceeded to give me a cuddle and kisses. Wow! How thrilled am I. Love him with all my heart xx
After spending the last 20 years as a professional musician, I can not explain how unbelievable this child is. I’m in awe. Hopefully this link works!
When we first received a diagnosis for Joe, to be honest, I was feeling a lot of grief. I needed relief from this pain. I needed to know that everything was going to be ok. I needed to feel hope when my world fell to pieces. Only another parent who’s been through this understands that feeling of being completely disempowered and disorientated. You’d spend whatever anyone told you to and go to any lengths at this point as long as you had something or someone to guide your way through the forest.
As I searched, I found there was a lot of information out there…. but sifting through it all I ran the risk of being shot down 100 more times and didn’t know if I’d ever get back up again. A lot of it was written by professionals and continued to tell me over and over again what the PROBLEM was with my child and how they needed to be ‘fixed’ as such. Where was the beauty? Where is the uniqueness? Where is JOE in amongst all this? Tell me HOW to reach him, not that scary visual portrayal that is seen on so many ASD sights where a child is trapped behind a door trying to get out. Visions like that… Did they really think about how seeing those things makes a parent feel? Scares you out of your wits. It did for me anyway.
So, here, in my corner of the world, I’d like to share hope. I want parents who will do anything for their child to know there are LOADS of things you can do in your own home that will reach your child and for the bonds of a relationship. My son calls me mum now. He hugs me. He looks me in the eye – a lot now- and smiles at me. He looks to me now for comfort. 14 months ago I would have dreamed of these things.
It’s so easy to be disempowered by the fear around the ‘A’ word. The only thing a diagnosis helps with is for the professionals to box up his condition so it fits nearly on a piece of paper so we can ‘technically’ get some extra support from the government. Don’t get me wrong, I’m immensely grateful for the support I have received so far, financially it’s got us of the blocks at least. 1 x 1/2hr appointment with a specialist per week is what it can buy us. But what about the other 60+ hours of the week? It’s me. Little old me. And his father and grandparents. But ultimately am his everything because I’m his primary carer. BUT I’m creative, I’m resourceful and I have a LOT of common sense, which seems to be sorely lacking in some aspects these days. I needed to find my faith in myself and my OWN ideas, not be knocked down before I even start. Coupled with other things I’ve learned and been shown, my son is starting to play with me now. And laugh. We’re in this together, all of us. Let’s empower each other as parents of these gifted, unique and sensitive souls. Let’s share ideas, spread empowerment to each other and know that after every storm there will always be light. Hold the beacon for your child. We may not always get it perfect , but love isn’t about perfection or fixing. It’s about acceptance.