I have met quite a few mothers of boys who have very recently had an ASD diagnosis. I have given my number keen to reach out myself – afterall I am new to the journey too having received a diagnosis for my son just under two years ago. I find myself faced with entirely different scenarios from chats with these mothers, which maybe should not surprise me but it does.
Some seem absolutely fine, no issues, no tragedy in their eyes, no signs of sleepless nights anguishing the past and regretting choices, sleepless nights spent online reading homeopathic blogs from India or dietary advice from.. well just about everywhere, Sleepless night getting fired up from American fighting talk Warrior mom, Let me hear your voice style books and blogs, sleepless nights watching endless diagnosis or cure youtube videos or fruitlessly wading through in-depth medical jargon about the studies into autism or the myth of autism or the epidemic of autism or the MMR link or the leaky gut, sleepless nights AFTER reading blogs by autistics and feeling racked with guilt over the unaccepting useless mothering a wonderful child. I will stop the sleepless night stuff you get the picture. They seem fine, just gonna crack on with what the local authority (such a ridiculous term for a group of people that administer provision) and are just well – cracking on – no problem here.
Who are you and why the hell am I not like you?!?
Tellingly though pretty much all the mums say this or a version of this: “I just care about him, I don’t care about myself” even the ones with tragedy in their eyes.
Hmmm now I have heard this once too many times. I DONT CARE ABOUT MYSELF. Surely that is not great whichever way we look at it. Upon some intense self examination – a rather exhausting, sometimes disabling ocd habit of mine – I think I cannot honestly say that ever again. I think it was all about me spectacularly in those early days, possibly still is – my fears for the past, the future, the present. My battles with the local authority and in my own head about what course of action to undertake. My life plan changed. My day to day completely altered. My patience tested. My thoughts and assumptions blown apart. My world views radically altered. My nights and my brain. Me me me. My lovely son was generally sleeping soundly and living his life in the moment. He seemed absolutely unhappy a times which was of course acutely unhappy to see for us.
I dont particularly judge myself for this selfish-ism – I am interested that I can really lay no claim to many a truly unselfish act thus far. I would like this not to be true of course but I have just laid before my own eyes the evidence of this very fact.
I remember the early days after I had my first son, who I was up anxiety alley with bless him, and the all the new physical demands on me. One evening after I had tried to get him to sleep after hours and endless hours of rocking and pacing, I put him still determinedly wailing down in his basket, walked out onto our balcony raised my eyes to the black sky and cried “I just cant do this” and I felt the sky answer me back with a gentle but firm “its just not about you anymore”. Amen. I saw the light and went back to rocking my son. I have always remember those words and they have helped me a lot raise three kids with no help, no mothers, mothers-in-law, sisters or aunts nearby to take the kids regularly which has been no picnic in the park everyday. These words help me soldier through the bad times, the dreary monotonous and thankless tasks and the feeling that you are missing out. But this completely selfless assurance surely misses a) the truth (read above) and b) the absolute epic saint task that it would take to really not consider your own feelings. ever.
I have – I should say – categorically thanked God many a time that it was no longer all about me. What a hell-hole I was in when I had way to much time and inclination to think about just me.
No more shame please. Its not about me while i am busy catering but when it is thats cool too – even if it is sleepless bloody nights…