I feel as though my worlds are on a collision course at the moment. You know you have different worlds, you compartmentalise your life into digestible chunks in order to survive (yes, Life is Survivor, and I am desperate somedays to be voted off the island!).
The last few years have been particularly harrowing. The disappointment of Rainer’s schooling, the stress and worry of moving him to a Special School (note: he couldn’t get into Special School with only an Austism Spectrum Disorder diagnosis. We needed more. Go figure.), the joy of finding a new, larger, cleaner home, the gut-wrenching car accident last April which then manifest itself into my current health woes, then in April making small changes which had me finally pain-free, only to trip on a football boot on the stairs and have my injuries flare again (we shall henceforth never speak of said football boot again).
You would think I did something quite nasty in a previous life or perhaps collected enough negative energy in my 20s to cause this on-going merde. When my life starts reading like a daytime soapie, it’s a sign that I need to re-assess and take control – once again.
And the signs have been there for months: a friend’s kind word or deed, my Massage Therapist (who is sadly moving to Adelaide – lucky Adelaidians), my Physio, my family (who I am convinced think I do these things on purpose).
Then this course came up by Christy Tomlinson:
http://christytomlinson.typepad.com/christytomlinson/my-living-canvas-workshop.html
Truly a cosmic intervention! I signed up early enough to participate in some secret squirrel prompts on a FaceBook group and by Week 4 (now) I am being forced to confront and articulate a lot of issues that are holding me back emotionally and artistically. While I’m not sharing a lot on the group, I have reams of writing and a few videos in my arsenal, ready to kick down years of self-doubt and guilt.
My one biggest hurdle is overcoming the guilt over Rainer’s Autism and here is why. No-one in the medical community can help me understand the WHY of Autism. Not one of them is brave enough to take a risk, open debate and follow a path of enquiry to lead me to an answer. Truth is, there is not ONE answer to this massively complex disorder. There is no agreement because there are so many vested interests surrounding all the catalysts (vaccine, diet, toxins, food additives, etc). So I lock into thinking it must have been something I did from conception to diagnosis. Now before you hit the REPLY button and start showering me with “It’s not your fault!”, let me continue.
UNLESS I OWN RAINER’S CONDITION, I CAN’T HELP HIM
UNLESS I PROXY HIS MEDICAL, EMOTIONAL, PHYSICAL AND INTELLECTUAL CHALLENGES — HE CAN’T MOVE FORWARD
Unfortunately, owning it has resulted in losing myself. I thought I could as easily compartmentalise the Autism in the same way I’ve compartmentalised everything else in my life – detatching each from the other. Not so easy in practice. So I have been swallowed up in the questioning – lots of questioning, the frustration, the anger, the depression, the guilt……oh, the guilt, the self-pity — but seemingly keeping it together in every one else’s eyes? Life of the Party!!!! Why is this so?
Because I learnt very quickly that if I am truly truly honest about my feelings and how debilitating this life-long, potentially degenerative condition is – nothing changes!
NOTHING CHANGES
NOTHING CHANGES unless I am the first to make that change.
So I am working on shifting blame and guilt and doubt and replacing it with PERMISSION. Permission to enjoy life, to have a happy life, to be happy in the moment (once again), to embrace that my life will always be difficult but acknowledge the joy that resides in all that difficulty.
It won’t be easy. Each moment I spend enjoying myself doing the things I love to do, I await the spectre of doom around the corner. That’s my vicious cycle. Once my cup of joy is filled, an incident drains it and then I am not only back to zero, but in the negative and running on adrenalin and sadness. So I need to stop the record needle getting stuck in the same part of a sad song of which the groove is so deeply etched, I can’t hear music anymore. Time to change the record, change the song, change the music that fills my head each and every day.
I want to be that person again, the one who was so much fun to be around, who people wanted to be with – not the person who they now cautiously approach (just in case she goes on and on about “it”).
The changes may not be mind-blowingly instant, but I am already noticing changes and that’s positive (for me and YOU).
Recalling my “word” for this year — RISE.
Rising above guilt, shame, blame, hate, anger, depression, self-doubt, self-loathing and fear — Embracing love, permission, joy, acceptance, healing and the now!
xxGiovanna
Giovanna Scott artist 
Over the years I’ve really come to believe that the challenge you have talked about here is the challenge of life itself for everyone. While the details of said challenge are different for everyone the process I feel is similar. Guilt, anger, frustration, self-doubt, fear, sadness, regret and the like are all things we have to overcome so while I have no true understanding of your particular challenges with autism I can certainly understand your challenges of overcoming these feelings/emotions particularly from the viewpoint of being a mother. When I was 24 I went through two armed robberies at my workplace within a 1 month timeframe and I mentally lost the plot. None of my family or friends could begin to comprehend the breakdown I suffered – most likely because I couldn’t or wouldn’t comprehend and admit it. Counselling did not help (most likely because I am a stubborn, independent woman who won’t admit when she needs help) and it is only within the last twelve months (so about 12 years later) that I feel I have totally moved past the effects of those two events. My happiness, sense of safety and security, my finances, work, health and in turn my daughters life have all been affected and the guilt over that has been enormous. G, you are such a strong woman and I wish you all the best with your journey. I am always here if you need anything. Tam xxx
Giovanna, you have no idea how much we have in common. We will one day meet and celebrate this new friendship. In the meantime know that I understand every word you just wrote. Take time to visit my friend Susan’s site. She is considered one of the most knowledgeable experts on Autism. She has become a very dear friend and I will be bringing her out to Australia for a special conference for people such as you. xx
http://www.holisticlc.com/ xx
Hey G. I am very tempted to start by saying “it is not your fault” (even though, you know, it isn’t)!! But what I did want to really say is that although circumstances may be different, I imagine a lot of mothers in this world are going through much the same issues that you write about, albeit at different levels I guess. Chin up, sweet girl, you know how much we all believe in you and the things you do for your family. Maybe we all need PERMISSION to be happy doing things we love, that sounds like a good plan to me.
Hi Giovanna, I know exactly what you are going through. I have 2 autisic children (out of 4) and I hear and relate to every word you have written here, you just have to know that you are not alone. I have been looking at Christy’s class and I would love to take it as well but I am very time poor at the moment but I know it will be a wonderful class.
I’ve come over from the Facebook group. I feel like I want to give you a hug & take you for a cup of coffee. I don’t know your struggle, but I do know that if you are happy you’ll be a better mom. If you can take time to enjoy life, it will be easier for you to fully be there for your son. I look forward to getting to ‘know’ you in class.
Hi there, Here comes a message from across the pond….. My name is Vanessa and I have a 14 year old son with learning difficulties.
I have read your blog quite a few times and especially remember the time when you wrote quite a lot about Rainer running off.
It’s tough isn’t it? I find every day challenging with Ben and have been through various stages of guilt, anger, self-pity etc. We have been lucky as a family to have a lot of support and sometimes I feel things could be a lot worse but that hasn’t stopped me being down.
You sound like you have a full life, you love your art and seem to be taking on new challenges alongside the huge responsibility you have of looking after Rainer and his brother. I think it is so important for us to have our own interests as well as looking after the family- maybe it’s a bit like an antidote!
I just want to say “Keep at it girl, you’re doing great and encouraging us all with your blog at the same time!” Best wishes Vanessa