What I wanted most for my daughter was that she be able to soar confidently in her own sky, whatever that may be.
-- Helen Claes
In my writing over the past few months, I know I have painfully and proudly spoken of my son but briefly, if at all, written about my daughter.
My daughter, is all my hopes and dreams come true, as is my son. But my hopes and dreams for him are more complicated, more raw. Ally, baptised Alexandra, deserves a post all of her own.
She was born into a family who yearned her and immediately was lost in love with her. However, when she was just days old her two year old brother was diagnosed with autism. Parents and siblings with disabled family members will understand the burden she carries.
As a new born, her lusty cries were answered by her brother with screams of pain and confusion. Her crying hurt his ears. She came into a world where routine and rituals were very important. And she most certainly was no part of any routine or ritual my son knew. Ally did not walk or talk until she was two and a half. We of course were very worried. Was this autism, was it modelling. I believed it was something entirely different. I believed it was fear.
Up to about twelve months of age, Ally achieved all her milestones. But the moment she started the cruising around furniture stage, tentatively trying to walk while holding on for dear life, her world turned upside down. Her brother, became territorial, he would growl and scream at her each time she pulled herself up onto our lounge. It terrified her, it stilted her, she stopped trying. It was awful, I felt helpless for both him and her. Suddenly his moderately inactive baby sister, was standing up to his level, touching the lounge and spreading her wings. It was too much change too quickly.
For my darling baby girl, she became terrified and stressed. I still feel to this day her high anxiety is due to post traumatic stress from this time. She has had to overcome as much if not sometimes more then her autistic brother. For instance, we will not punish Clay for his autistic behaviour. But how does a small child understand that her brother is not getting punished when our expectations of her are different.
He's not heavy, he's my brother is something she is learning and will also be something she will resent. She does love him. She adores him. Clay is totally obsessed with traffic lights and Ally seems to think that she needs to find the fun in that. She will cry out in excited delight when she sees an LED traffic light. Thinking this is what is expected because we have praised our son when he has noticed the difference in the old and the new style traffic lights. I might mention she is usually wrong but no matter to us.
He is still very very hard on her. He still yells and growls in her face. I can't be her shadow 24/7 so it is hard to protect her. I try to, but I also try to teach her ways to avoid or help herself. She is still though a little girl. She needs to be nurtured, loved and protected and I am not able to do this all the time. It kills me. I worry about her anxiety. I worry about the future for both my children as all Mothers do. But, my worry includes worries no Mother should feel. Will my daughter secretly resent or despise her brother. Does she get hurt when we expect so much more from her. Are we wrong to expect so much more from her. It is a double edged sword. I want to give her the childhood a 7 year old should have but it is bruised by an awful pervasive disorder called autism.
We are considering a different high school for our daughter. My husband and I want her to be known as Ally not as that girl with an autistic brother. She already is in some ways his protector and will not suffer gladly bad treatment from others.
So, while I consider Clay to be my hero; my daughter, Alexandra Diana Rae is my heroine and my rock. She has a beautiful kind sweet soul. She is inquisitive, cheeky and can dance like Beyonce. She is a loyal friend and a loving little girl. She is also shy, timid and scared to try new things. She has very high anxiety and is terrified of dogs and cats. Some of this is because she is seven and some of this is because she is the sibling of an autistic brother.
While life will be harder for her, she will be a better person for it. A bitter sweet pain for a Mother to endure.
So, my darling girl, know this; I am in awe of you. You take my breath away and you are not alone. You have my heart forever.