by DQ, So Far
It takes courage and faith to put on the oxygen mask.
Courage to choose myself first.
And faith that it is OK to do so, OK to choose me, and that it is OK to live life for myself, too.
Some wonderful writers have already shared the impetus behind making the change – the awesome Alysia has taken her inspiration to a higher level – by starting a project to share, encourage and support other parents who are feeling the same ways about life (often, but not exclusively, with autism).
How lost a person can feel.
I felt very lost for quite a while. In the later months of 2007, I dived into everything about autism. I submerged myself, I became what my son needed and continues to need – an advocate, protector, teacher, therapist as well as mum. I had to be informed, I had to learn, I had to understand what the best choices for him were.
That is where the courage and faith comes in. I had to be brave to step up – yes, it was automatic but, damn, it took courage, because I felt like I was not enough – not patient enough, not strong enough, to take it all on.
At the time of diagnosis, just over 4 and a half years ago, I felt like I was drowning in overload. It seemed too much, too scary, too unknown, too big a mountain to climb – that I didn’t have what it took to be what my son needed. But I did it anyway – because of love, because I just had to. Regardless of fear and self doubt, I had to.
Looking back, how I did that was interesting.
With hindsight I know exactly what happened.
In the moment of hearing the words ‘your son has autism’, the wave of grief crashed into me, I reeled and tried to hold on to what I knew – and it seemed like suddenly I didn’t know a thing – except that I loved my son with every fibre of my being and that I would fix him. I shoved everything I had imagined for myself and my family aside – the expectation of return to work, of adventures, of travel, all the idealized imaginings of family – and put my son first – above everyone. I needed to do that for him. The compassion that came with his diagnosis was in the truest meaning of the word- awesome. I felt a physical shift in my heart, the compassion for my son multiplied to what felt like infinity. It was glorious and a little scary. What wouldn’t I do for him?
That is a very interesting question. At first, I did everything. I turned myself inside out. To the point where I felt like one of his limbs. It seemed that he needed me for everything. Our connection and co-dependence was powerful. It dominated every aspect of our family life. I became a unit with my son. It was a very unhealthy existence for us both.
Now, I am working with him on his independence. Just the other day, I watched as he went to the fridge and got himself a glass of orange juice. He even remembered to put the lid back on it, and put it back in the fridge after he poured his glass. Simple yet important. And a little bit magical, to me. I am now in awe of him in a totally different way.
In the process of doing everything I could think of for my son, of turning myself inside out, of putting my needs constantly behind his, I got lost.
This seems to be a theme that resonates throughout many blog posts I have read recently. I felt as though I had lost my identity, my sense of self. I felt that I had lost out, too, on a truckload of ‘might -have- beens’; what my life, my family’s life might be like without autism?
Today, I don’t consider myself lost at all. I have actively spent the last 12 months working towards many things, including finding myself. For me, last year was the beginning of my own Oxygen Mask Project.
I consider it a lifelong project. The kind of person I am, the personality I have, means I am going to have to actively do this work for myself forever.
I took things one step at a time. I sought the help I needed, and I continue to seek it. I went after and got two casual jobs. I love them. They enrich me and bring the kind of engagement I didn’t even know was missing from my life until I started them. It is tricky juggling everything. But it is worth it.
I have set my personal compass to my own path, not my son’s.
He needs me, perhaps he always will. But his own developmental story tells me he is going to be OK in the ways that matter most.
I have also learned so much from autism. I have a different life than I anticipated, certainly, but I also have many blessings – knowledge, experiences and above all, awesome people in my life because of autism. I don’t think autism is a blessing, please don’t misunderstand me. I have learned to work with autism, rather than against it.
By looking after myself on every level – mentally, physically, emotionally and spiritually, I can be around for a long, long time. The biggest realization I had last year was that this blog is not the best place for my journey. That is why I have decided to begin a second blog, it is called So Far. I will continue this blog, especially now that I have a clearer idea of the kinds of things I want to write about for myself, and for our continuing adventures with autism.
So, the story behind my Oxygen Mask Moment is quite involved. I am going to share it as honestly as I feel comfortable with over at my other blog. If you are a fellow traveler on the Oxygen Mask Project, I hope you can join me there.
“Be glad of life because it gives you a chance to love and to work and to play and to look up at the stars.” – Henry Van Dyke
I am a happily married mum with two sons, Captain Nintendo and Perky. Perky is 8 years old and has a diagnosis of Autism Spectrum Disorder including Sensory Processing Disorder. Captain Nintendo is 10 years old and has a diagnosis of Sensory Processing Disorder, including Central Auditory Processing Disorder. I currently work casually as a museum educator (my first calling) in two cultural institutions in my home city and thoroughly enjoy it.