Sebastian will be fifteen months old soon, at fourteen months Ariella had just started to crawl. I try not to compare siblings but S is a constant reminder of typical and it is difficult, perhaps even impossible to not notice. I remember being surprised the first day that S looked at my face and brought his own hand up to touch my cheek, I could tell by the way he had done this with such a light touch it was intentional. You only had to look at his face to know he was making a connection, a social one in that moment. I can’t remember how old he was but it must have been younger than six months old. I see S as so much older because the baby stage with A has stretched out in front of us, every single step, every skill takes so much energy for everyone involved.
We have a review meeting planned for next week which is focused around whether or not A fits the profile for a diagnosis of Autism spectrum disorder (ASD), this follows a multidisciplinary review that was done back in January. No matter what the outcome of the review I know because I live with A that she is autistic. Every single waking moment is focused around transitions, anxiety and sounds. I know because she has never once held her hand to my face or looked me in the eye the way S does. I know because I still wait for us to have a real conversation. If Autism isn’t the right word then we are making our own profile for a neurological way of thinking that has no diagnosis at present.
It will be nice to draw a line under the last year of confusion on every diagnosis that we’ve gained so far and understand. With understanding we can tailor experiences going forward and we can read and learn how to best support A to enable her happiness. We can stop trying to make a round peg fit in a square hole, I don’t care if we have a round hole in a field full of square holes. But I do care about the unbalance and distress that is caused by the former and while we don’t need a diagnosis it will help a lot with understanding.
In the evenings when I am stirring up the second dose of Ariella’s medicine, watching her eat her ice cream (which she has to have after her evening meal else the world has ended – we make our own now with smoothies) I often think about how something simple like this has become so normal to us and yet for most children, taking a twice daily medicine which you need to give a good stir due to the large quantity of pills dissolving in it would be a massive challenge. Routine has a large role in this, we have a daily rhythm which is held up by blutac and keeps things ticking over. It helps a lot with A’s anxiety and she finds reading the visual timeline very helpful. Somedays it does feel too rigid for me but I know if we don’t keep to it then we are more likely to see a flare of challenging behaviour (kicking, biting, screaming, hitting, repeated phrases, head butting, pushing).
We’ve started potty training, yippee! Part of fully understanding the different ways and approaches to how children with ASD think has helped me buy more appropriate reading materials. I’ll have to keep “Oh Crap, Potty training” to hand for S when it’s his turn to potty train, instead I’ve been reading “Ready, Set, Potty” which is aimed at potty training children with Autism and developmental disorders. It makes so much sense to me now why typical potty training methods just won’t work, you are almost relying on a set of typical behaviours and for a child to know what to do naturally. Let me tell you, the only thing that has ever come naturally to A is eating. That’s it, the only one thing we’ve been able to follow her lead for, which is really strange for me because I generally believe that you should follow the child. Only issue is of course that relies on the child having a desire to go.
With that said, potty training so far is going really well given the challenge of communication and resistance to change. We are using a visual time line and motivating toys, no going back now! I’m really keen to keep going and reach that level of independence for A. It will be a joint effort between us and nursery but we are all working for the same goal and I couldn’t ask for more right now. When it comes to potty training S I am hoping it will feel like a breeze! It is the last day of term today and I am expecting the change in routine to holiday to be a challenge for A, I expect Monday will bring lots of challenging behaviours but I am also excited by the possibility of really cracking on with potty training at home. I think having consistency and being able to take A to the potty every hour in the same place will really help, nursery is of course a new environment whereas home is not.
Despite how noticeable the difference is, it is different but not less. It has allowed me to think about things in a way I would never have. Would I even know what a visual timeline was? Or have such a understanding of developmental delay and rigid thoughts/routines? I don’t think so. Things are taken quite literally by A and sometimes that can cause some of the biggest laughs ever for everyone involved. I am constantly reminded how lucky I am actually to be part of both parenting worlds, although I wouldn’t wish the struggle on a child it has taught me to look at the world differently and that there are qualities within people that are rare and valuable beyond what we see on Instagram and social media.
Noticeably different but not noticeably wrong.
One day we becomes –you-, overnight they develop their own personality you find yourself asking them what they want to do. Does Ariella want to go out today? Do you want to wear this or this? Do you want something to eat? Just like that one day they aren’t happy just following you around and doing what you want to do, they want to explore and have their own time. I think this is so far the hardest phase, watching but not interfering is a difficult balance. Being ready to intervene if needed but not always needed. I imagine it’s just going to become more like this, I’m sure eventually you adjust to having a bit of your own time again, piece by piece. This is certainly where you are, you are your own person and know your own mind.