So today’s post is going to be a little bit of a random brain explosion about the dynamic of relationships within families where one or more family members are autistic. So for those of you who follow us on Instagram you might have seen a picture this week of the Princess packing her belongings and ‘going to Melbourne in a big, big plane’. She kissed Touristo and I goodbye and said that she would be back soon before proceeding to her bedroom, sitting on her bed, ‘buckling her seatbelt’ etc etc. She then went to the aquarium, stayed in a hotel before getting back on the plane to ‘come home’. It was very cute imaginative play. But then she wanted to take her brother and I to Melbourne…….and he was completely confused. She told him they were going on a ‘big, big plane’ and he was looking for the plane because he LOVES planes and he is very literal. Then he looked at me as if to say “WTF are we doing here”. Touristo had no clue what he was meant to be doing so I helped him to buckle his seat belt and just generally play along. Anyhow…..as confused as he was he went along with her game……because he loves her and likes to be with her, and I think he may have started to understand the game a little bit towards the end.
This reminded me a lot of when my sister and I were little. My sister is one of those people who 99% of people like instantly upon meeting. She is creative, artistic, intelligent and has an amazing imagination. She was the type of child who carried on with the Santa fantasy for years, cognitively knowing that it was a fantasy but desperately wanting to keep that sort of magic in her life as long as possible. My sister also happens to be the Princess’s kindred spirit – they are very similar. As a child, I let my sister do the talking and upon meeting me, people tended to take me for aloof or possibly unfriendly, though if you take the time to really know me I am shy, loyal, very kind with a strong sense of social justice. I was and still am very logical, process driven and take comfort in things that are provable, needless to say the Santa fantasy ended for me at about age 5, but I never spoiled it for my sister because I knew how much she loved the magic. I guess it’s not that hard to guess that Touristo is my kindred spirit.
Growing up, my sister and I were polar opposites but we worked together as a perfect team. We helped each other with the things that each other found difficult, and we were never competitive with each other because the strengths we both had were not even vaguely comparable. I am now seeing a second iteration of that relationship with my children, and the Princess’s imaginative play the other day was such a glaring example. It made me think back to when my sister and I were children and she liked to ‘go to Narnia through the closet’. Her imagination allowed her to actually feel like we were going to meet Aslan! Unfortunately, my imagination does not allow me to do that……we were still just in a closet. But I played along with her, because she is my sister, I loved her and wanted to hang around with her and heck I really did want to go to Narnia too…….and whilst I never really completely ‘got’ imaginative play, I learned how to do it well enough to fake my way through pre-school. Looking back now I realise just how much she taught me without trying….I mean this is just one tiny example…..a bigger one was being able to model off her social skills, which is immensely useful.
This leads me to my point. I often see some ‘autism sibling’ and ‘autism parent’ memes that absolutely break my heart. I think the one that really inspired this post was “a big high five for the autism siblings. They make sacrifices that their friends never understand”, as displayed in the feature picture of this post. Now I may alienate some of my neurotypical (NT) readers with this but I feel I do have to explain why I find this heartbreaking and offensive. What this meme is really saying is “NT kids you are so strong, amazing and brilliant for putting up with this burden of a sibling”. Autistics are so often painted as burdensome, challenging, difficult and just generally negative, and that the people in their life should be praised or handled a medal for having to ‘put up’ with such a huge undertaking. Do NT people not understand why this is so hurtful? Really? To constantly be painted as a struggle or difficulty that has to be endured? I thought I was meant to be the one with poor theory of mind……
Now I am not being so totally disingenuous as to suggest that parenting or being a sibling to an autistic person is always a walk in the park. But as far as parenting goes, parenting in general is very difficult. It is isolating. There are challenges and to a large extent you have to give up your own sense of self. This is with ALL kids. The challenges that are presented in raising a severely autistic kid are very different but you adapt and accommodate to those different needs. But the gifts you get back, if you are open to it are immeasurable. Helping my son navigate his way through this incredibly confusing world is the biggest privilege that has ever been bestowed upon me. I am not a saint, amazing, super-mum or a martyr for being his mother in particular, not in the slightest. For the record, I think ALL actively engaged parents are amazing, rock stars for what they do day in day out.
In regard to this particular meme and sibling relationships. You know what, you might have a different path to walk down than your friends, but to say that it is a life full of struggles…….? Please. It also fails to mention everything that your sibling relationship gives you in terms of friendship and/or personal development? With regard to my own relationship with my sister, I am sure she would say that our relationship has been mutually beneficial. We talk every day, we balance each other out and we are there for each other. With regard to my children, maybe one day the Princess will think she has endured struggle because of her brother’s severe autism. What she feels are her feelings, and everyone is entitled to their feelings. I just hope that she also sees everything that her brother’s severe autism has brought to her and our family like:
- a tight knit family that became even tighter to meet our different needs
- the extra outings we went on to nudge Touristo out of his comfort zone and teach him how to exist in the big, bad scary world e.g. go out and order a cookie from the Bunnings cafe
- the holidays that we just wouldn’t have seen as a priority if I didn’t think they were important for broadening Touristo’s world, teaching adaptive skills and nudging him out of his comfort zone
- all the extra treats she scored when her brother was rewarded for using his language (she gets one by default when he earns one – in return she spontaneously asks for things she knows he might like)
- parents that dedicated as much one on one focused time with her as possible because they don’t want her growing up feeling like she doesn’t get enough attention
- a brother who is loyal and very patient with her even when she is being a strop
- her kindness, patience and acceptance of all people that she has already developed at such a young age. He makes her a better human being
- she even gets to sleep snuggled up to her mama. I sleep in their room because Touristo night wakes. If he can reach out and touch me in the next bed, he goes straight back to sleep. So the Princess gets to sleep in my bed because I don’t want her to feel left out.
Anyhow that’s me for this week, I welcome all thoughts and comments either here or on Facebook. Let’s start a discussion.