Seb turns 3 this weekend, and I am blown away with how much has occurred in the last year, let alone three years.
I do not get as much time to share our journey as I anticipated I would… working, managing our therapy schedules, just daily living… and we just added a new boy to our family, Milo, who is also keeping me on my toes!
A lot has happened the past few months.
We moved house… kind of a big deal for a little autistic, but he has managed it really well! He loves all the extra space we have, and all the areas he has to explore all the time, as he doesn’t have free access to all areas or activities. He has a back yard with a trampoline, swing, a huge saucer to rock and spin in, sandpit, splash pool in the warmer weather, bikes, balls, fairy lights for those summer evenings that are on the way, and a place for the puppy. There’s a play room/sunroom, his bedroom and being a 1930’s house in it’s original character, lots of pockets of room to run crazy in! We took a few weeks to move in to our new house from our old place to help Seb feel comfortable, and it worked really well.
Sebastian got his funding for therapy support soon after we moved, and this is a really big deal for us. Whilst it is still no where near enough for his needs, it is a bit of a relief for me financially, and helps our therapy team know what we have to work with. We were fortunate enough to sneak in on the federal NDIS so we really were lucky!
Seb is also about to start using a communication device to help him. We are going to trial and iPad with Proloquo2Go. It’s an expensive app, and I will be using it for the first year or so, till he decides he can see the power of being able to communicate and wants to try it. I am anxious about it… there’s a lot riding on it, and it’s like telling me I am about to learn Japanese to help my child communicate with the world, and speak Japanese with him from now on. It is quite intimidating really.
In the last few months I was clinically diagnosed in the Autism Spectrum, or if it was in earlier days, it would be called Aspergers Syndrome. Obviously I am considered “high functioning”, or level 1, which means I am able to function as well as most neurotypical people in life, but I have strategies and and mechanisms I have developed that support me… and it also explains a lot about where I have struggled or had a lot of confusion in my life. Autistic females present quite differently to autistic males, and it is interesting to see back in my history how autism has been a part of my life, and how I have always been a little different to many others. It has been interesting discussing it with my mother and grandmother, and being able to look back on things with much more understanding now.
The diagnosis doesn’t change me or my life any, however, it is exceptionally freeing and healing, which I did not expect. The understanding it helps provide, the self acceptance, being more aware now of what my triggers are, how I need to manage stress and anxiety from those triggers and being able to foster that regard for myself without feeling wrong, not good enough, unloveable, a bad person etc is very life changing.
Most importantly, I think it is really valuable for Seb to understand we are similar, and I can have confidence in my understanding of his differences. His identity as an autistic person is nurtured in understanding we are of the same “tribe” and nothing bad happened to him, and he can live life on his terms… just like his mum has.
Not hiding that we are autistic, and what our life is like, and how we think and feel and living lives that everyone else lives, is important for people to learn and embrace autism in our community. Sharing how we view things and experience the world around us, and how hard we work to “fit in” even when we are merely playing the role of fitting in, helps people understand and accept the different neurologies, and become inclusive towards autistics. That, I am sure, will be many blog posts shared in the future. 😉
In the past few months I have worked hard at being gentle in leaving Sebastian to be cared for by others. So far this has been leaving him with his therapists who he knows well and loves, but also a young amazing babysitter. She is awesome! She is studying zoology at uni, and each time we see her she had a different colour hair! Sebastian is very relaxed with her, and she can hone right in on his interests, and knows the perfect balance of when to leave him alone and give him space.
Seb has recently met his uncles, aunties and cousins, and his grandparents again. We have not been very connected to my family through Seb’s life, and this has changed a bit recently. This is good for Seb, but admittedly, it is hard for me. The more people in Seb’s life, the more misunderstanding or lack of understanding there is about who he is and what his needs are. I think people are in a whole range of experiences in their response and relating with him. I can tell some are scared of him, and because they don’t get a typical response from him, they don’t make a lot of effort with him. Seb is not the child that gives people the warm fuzzies of friendly feedback that little kids often do… I mean he does and will, but you really have to get in on his world, not expect him to enter yours. It takes patience, interest and time… and most people are not that invested. That’s a lonely feeling to be surrounded by people but no be connecting with anyone, because they don’t understand and they don’t try, because it is not easy. Most people need to feel a trade off for their time and effort when it comes to investing in a relationship – smiles, hugs, laughing, something that suggests the child likes them, approves of or “loves” them. Seb doesn’t know how to do those things, and anything he offers is incredibly authentic, and should be valued because he doesn’t understand the social games that many of us participate in without thought.
Admittedly it hurts as a mum to watch people stand back, do the token greeting to him, and not really connect with him in any meaningful way… because I know Seb may feel lonely in time. Being in a crowded room or having people around you but feeling different is hard. Knowing people are intimidated by you, or scared to try to relate, or simply not invested enough to take the time to enter your world is what autistics struggle with all their life, and so much of that is founded in their younger years. I am hoping to build Seb’s esteem so he doesn’t experience that a lot… and that means I have to make some tough calls about who, what, where and how. Often more is not better when it comes to people in our lives. I really have to start deciding who is in proximity to us, and how they interact with Seb in the ways that are obvious, and not so obvious, but will have an impact on us.
People think of and treat Seb with all sorts of different ideas. A common one is as if he will “catch up” and outgrow all this, and be fine… or that he will just be “cured” through all the therapy we do. They say things that let me know what has been discussed behind out back, from the way he eats, (or doesn’t eat), to toilet training, or passing him off just like his cousin who is the same age as him, but not autistic. Each time those things happen, it is like a bomb going off in my brain, and I try to let it go and know ignorance is all around and not intended to be personal… but it is hard to pretend it is not a lack of acceptance for what is and what will be… that somehow Seb is not enough or ok as he is, and they hope he gets “better”. All those unconscious messages are something I am highly attuned to, and need to filter away from Seb, so it doesn’t impact his esteem as he grows.
Seb had his first school appointment a few weeks ago, and I went with the belief we were not going to do three year old kindy. I didn’t think Seb was ready for it, and it is really expensive with no government funding. However, the Principal was so amazing and the school programs that will support Seb are so good, I felt like I would be doing him a disservice to not have him enrol next year! He is going to a lovely small catholic school of about 200 students, which has a special program funded by catholic education to help children with support needs mainstream. When the Principal, who has an autistic child himself, was organising his day on his apple watch, and said to me that Seb’s biggest challenge through school would probably not be autism as much as dyspraxia, I could have cried! He gets it! Our 15 minute appointment seemed to go for two hours, where he showed Seb and I around the school, accepted our enrolment on the spot, allowed me to pay the fees off slowly, and took us to Seb’s class where there were so many support staff, probably more than students, and it was an amazing set up! So whilst I know if will be hard for Seb to go to kindy, be without me, and be challenged by other students, teachers, and start learning things he probably won’t be inspired to with me, I am confident they will help him a great deal. They also will use the same communication app with him, as they are trained in using it at the school so can be consistent with that.
Seb is also starting swimming lessons next week. This is a must, because he has a love and overconfidence in water and he is an awesome escape artist… so for safety, this is a must. I am hoping he enjoys it and it will become a sport or interest that he can enjoy all his life.
We are scheduled to go to Bali for Christmas and New Year this year, but will wait and see what happens with this volcano. Taking a just turned 3 year old is really different from taking a just turned 2 year old overseas…and Seb has learned the power of his emotions and will… This has made my life petty challenging of late.
Seb is still not saying a word, but he has made some excellent progress with his intentionality and shared interest behaviours, meaning he is getting better at getting his message through to me, and starting to enjoy the “social interactions” that children much younger might have with others. He likes to show me something on his iPad he likes, or ask me for help, and has only just started doing actions to some of his fave songs, or dancing and doing some actions in front of them in tv. This takes him AGES to do… I noticed him working on one song for months before it was able to be recognised for what it was. I am so delighted for his progress in these teeny steps.
His gross motor skills and balance have improved HEAPS! Having a trampoline has helped a lot with all that. He still has heaps of accidents, but is quite amazing compared to where he was just weeks or months ago.
I am always amazed at what Seb seems to understand about what is happening. I do put a lot of effort into helping him with some things, like using social stories and pictures to help him… I always think it is me just going through the motions, but am always surprised that when it comes down to it, he seems to understand.
Sleep is hard, behaviour is hard, food is hard, personal care skills are hard…and it’s all getting harder as he is getting bigger and is no longer a baby. At the end of the day, we can only work on so much at a time, and we just don’t have enough people in our lives to help with more than we have on our plate right now.
So thats’s a brief update of where we are at as Seb embarks on his third birthday!
I will share more about interesting experiences and learning along our way… just need more hours in my days! Happy birthday Sebastian!