It’s been a while since I have written anything. I should say it has been a while since I have had time to write anything!
Sebastian and I had an amazing Christmas and New Year. We went to Bali for the festive season. It is a really well deserved break for us, as our weeks through the year are incredibly full, balancing work, therapy, chores and daily living. It was amazing to enjoy Seb out of his comfort zone, and to see how he experienced the different environment around him, and delightful to enjoy the bond, trust and intimacy between us, in a new environment. I LOVED watching his love for the water and beach, and the little bit of freedom he had with the help of a nanny to accompany us at times. It was so nice to go with the flow, not worrying about cooking or cleaning, or work, or anything else, and just enjoy whatever presented in the moment.
This year has been pretty busy again, with therapy needs increasing, and the struggle to secure government funding to support Seb. He has some really prominent apraxia challenges, which are really affecting his ability to learn new skills other kids his age are confident with. Seb still doesn’t use any words, but he is great at using his body to let me know what he wants. He is also amazing at protesting when he doesn’t get what he has requested! 😉
He has started moving towards “shared or joint attention” which is a very tiny step towards communication, that many children demonstrate when around 10 months old.
He has just started eating foods with different textures, like bread, muffins, cakes etc, where he would never eat them before. Now he is LOVING them!
Sometimes he likes to play with me, like chasing, tickle or rough and tumble games, and he really enjoys them when we play.
He doesn’t sleep much, waking between 12 and 2am many nights, and he is ready for the day. He doesn’t nap in the day, unless by accident by falling asleep in the car, and even if this is just for two minutes, it makes bed time impossible!
He is playing with his balance, with how he leans on things, climbs, sits etc, and that is amazing, as he doesn’t have great core strength, and this is improving and as a result, helps his brain.
All such small and seemingly insignificant things, I know. I am so excited when he makes the tiniest steps forward, which seem insignificant to most people, because most people don’t understand how these things are all reflective of his brain working in different ways.
Autism is so much more complicated than people not familiar with it tend to understand, and that can be very isolating.
Development in autism isn’t a linear progress line like neuro typical children tend to progress in. Even when Seb was a baby, he needed help from the physio for his flat head. She tested him and commented even when he was a few months old, that he had a strange pattern of progress with his physical milestones. He was advanced in some things, and delayed in others, and it was very unusual, as so many of the milestones typically occur in a linear progression, and achieving one, leads to the next etc.
Seb’s brain and body doesn’t work like that. He can be an amazing and strong climber, but when he sees a climbing frame, he doesn’t know what to do. The messages from his brain to his body to plan a sequence of movements to do what he wants doesn’t work. It is similar with his hands. He has a fantastic pencil grip, and has ever since I can remember. He loves drawing and building block towers with amazing precision. But he cannot plan how to use a spoon, or fork, or how to drink from a cup. His brain signals to his body get mixed up and don’t make the connections. I watch him imitate waving very very occasionally when he mimics it from Teletubbies. He cannot work out how to wave with his hand facing the person he is waving to. His very occasional efforts to wave which are only in response to watching the Teletubbies say “bye bye” consist of him trying to wave his hand goodbye, but with his palm facing his face, watching it, trying to work out how to do it.
These challenges are really hard for a little one’s confidence. Play and therapy require the perfect balance of challenge for his persistence, and yet not challenging him so he finds it too hard that he quits and doesn’t want to try.
Seb’s cognitive learning is occurring through his iPad at the moment. It is impossible to engage him as much as his iPad does at this point in time. He enjoys the freedom and skills he is able to demonstrate to choose his own videos, or watch things on youtube for kids, or ABC for kids. He has so much power, where he is not able to have it in most areas of his life, and this is very important to him.
He also enjoys his apps and videos about colours, numbers and letters. He can trace numbers, trace the alphabet, match letters to make words, count off items, match items, shapes etc. There is no way I would have been able to help him learn all those things without his iPad interest.
I don’t restrict him with the iPad, as it’s his little learning world right now. He doesn’t have it when it’s therapy, or if we are shopping, or doing things where it’s not necessary or appropriate, but screen time in his life is very different to screen time in other children’s world. He will also be using a communication device soon, and his skills with the iPad will support him in learning to communicate with us using a device.
He is responding to my requests sometimes too, so he understands what is occurring around him.
All these things I could not be happier about, as that are all signs of progress.
Here is a point I would like to clarify. I am not treating Sebastian’s “autism”. Autism cannot be treated. It cannot be cured, and it cannot be changed. Nothing happened to make him autistic either. I also find it insulting to say we are treating his “autism”. Autism doesn’t require treatment. Not all people with autism have apraxia challenges. Many people have apraxia challenges who are not autistics. Many people have communication challenges who are not autistics too, and many autistics don’t have challenges communicating verbally. What we are doing is helping Sebastian, as any child needing support to live in today’s world would need.
I do not address Sebastian’s eye contact at all. I invite it as a nice way to interact with those he trusts, by encouraging him in play and drawing focus etc, but I do not care if he goes through his whole life not looking people in the eyes. There is no skill in that, or meaning in that, and it doesn’t disadvantage him in life significantly. Sebastian has a lot of stimming behaviours. He jumps up and down, rocks, head bangs, flaps, tenses and stiffens his arms and his body, toe walks, pushes his head back, hyper focusses on objects close to his eyes, spins, seeks deep pressure against his body, constantly moves, shrugs his shoulders up and down, hums, …and literally, he does this all day long constantly in any combination. He stims much more than many other autistics. This will be a challenge for Seb in his life in how others respond to him. But for Seb, that’s how his body is trying to process what he is experiencing, and how he tries to self regulate how he is feeling. I do not believe in trying to change that.
My focus on support for Seb is his natural development, at his pace, to support him to live the best life he can all through his life, not to change him, or make him less “autistic”. To do so causes massive pain for autistics, as it would for anyone who was given the messages that who they are isn’t good enough, and needs to change.
Do I worry? Of course I do. All mums worry about their kids. I probably worry more than many mums, because I worry about Seb’s future, and his ability to care for himself, and his support needs that will follow him all his life, and my inability to be that person for him forever. As an older mum, and with Seb not having any family to care for him as he gets older when I am no longer able to care for him, he will need to rely on strangers who are paid to care for him, and having worked in that system, it terrifies me for him. 😦
Right now a lot of my energy is absorbed into fighting for Seb’s funding for therapy. The government has rolled out a scheme that means Seb would have to wait nearly three years to get what he is doing now, and that is very important lost time for him. (If we lived anywhere in Australia, he would actually have more support than he will get here in WA.) I am connecting with advocacy groups, government departments, Ministers, and politicians, and now we have just had an election with a new government, I get to start all over again. I cannot manage his needs financially at this point in time, as they are significant. The government believes they do, however, the service they offer is not suitable for Seb, or at the standard we have become used to with his therapy team who have had him for some time now. I am advocating for him to have the right to continue with that team now, as opposed to three years time under the proposed scheme.
Having a child with a disability is exhausting. Not just for the extra stuff you do that you might not with kids who don’t have a disability. The extra effort you have to put in to teaching skills and how to communicate, are all very taxing.
But the real truth is the lack of support and understanding from others. It is hard not to feel irritated when people whine about their problems that are temporary, or how busy they are or how tired they are, when they can make choices that will change those circumstances and things will improve. I feel frustrated when people don’t seem to understand how busy our lives are. I don’t really have anyone to talk to about the things that worry me, or even the things that make me so happy, because no one is actually that interested. People tend to dismiss concerns or things important to work on, because they don’t understand enough about things.
95% of the time I am pretty good with it, but there are times I realise I feel incredibly isolated. Like when completing enrolment forms for Seb’s school applications, and realising if anything happens to me, there is no one he really knows who would be able to pick him up and care for him in an emergency. That no one really knows what is happening for Seb, what his days are like, how he communicates or makes his needs known.
Those are moments I reflect on myself as a person and a mother and feed a complete fail, that I haven’t found the way to nourish enough relationships to have more people in our lives, and how that can impact my son. How ridiculous I feel when a meeting, or training or something comes up where I would need to participate without Seb, and that cannot happen. I see how we are both limited for the lack of relationships in our world, that Seb is safe with. Unfortunately, I struggle with the time and energy for many areas of my life. Relationships and even my health and fitness are critical at this point in time, and yet I still not have found the solution or motivation to make those things more important, in the plan of what we do every week.
So that’s the update of where we are at right now. Cannot believe we are a quarter of the way through the year already, and Seb is about to be two and a half!
Even with the challenges we have faced, I can honestly say that every day since Seb has been born have been the best days of my life, no matter how challenging moments have been.
I am also the best person I have ever been since he has been in my life, even though there is a lot of room to improve! I could not be prouder and happier with our lives.
I will write more soon. 🙂