While the world of autism is talking, blogging, and arguing about Autism Awareness Month, over here we have been dealing with another kind of awareness. One in which autism, like with a lot of other things, brings challenges, not just to Maya, but to me as her mom.
A few months ago I wrote a post about how I and everyone around me were noticing changes in my daughter and my fears about how to talk about it with her.
She’s still so much of a kid, a kid that plays with stuffed animals and likes to hold my hand. As hard as it is for any parent to acknowledge that their babies are growing up, I do think with an autistic or other special needs child, the regular bittersweet feelings and fears are also accompanied with big-fat-scary-fears. Fears that your child will not understand the changes going on physically and emotionally, fears that the social implications of puberty will leave them even more vulnerable and unprotected. Fears that the process of growing up will wreck her innocence and that she will end up hurt, confused, jaded, and withdraw back into a world of her own. Fears that the hormonal surges might manifest itself in behavioral challenges difficult to overcome.
Still, a few months on from my post, M is still developing. I spoke to our doctor about it and he told me that although she is young, she is still within the confines of normal development and that there is nothing to be concerned about. He told me that it was possible to slow down the process through hormone therapy but that generally he didn’t recommend interfering with the body’s natural rhythms. I thought it was good that he asked me how the kids in school and around her were reacting to the changes, whether there was any teasing or bullying going on because in that situation, we may want to consider whether to slow things down a little. He did tell me to be on the lookout for changes in Maya’s behavior; if she withdraws or starts acting out a lot it might be a sign that all is not well in her social world.
Is it weird to say that I am grateful that M is not in a mainstream environment? I think if she were mainstreamed, the chances would be much greater that she would be teased and bullied because she is 9 and showing outward signs that her body is changing, but because she is in a special needs environment, the kids are less socially aware of differences and so far, it’s been okay.
I think my biggest problem isn’t that she is changing, but that she is, despite her developmental delays, becoming a woman. I think my biggest problem is how to find the right balance between giving her the information she needs while at the same time preserving that part of her that is so open, innocent, and uniquely her. When your child is small, you shield them from a lot of the harsher realities in life. But now that she is growing up she needs to have that information. How do I, as her mother, give it to her without trampling on who she is?
I know I cannot shield her and that it’s not fair or right for me to just let everything happen to her with no explanation. I want her to understand what these changes will mean for her, so that she will be able to take care of herself and protect herself.
I want her to understand, to the best of her ability, what it means to be a woman.
I have a lot of worry that people might take advantage of her because she doesn’t always see what is really going on; she’s vulnerable.
How do I hold on to her vulnerability without signing her up to be a victim? How do I make sure my fears about what might happen don’t drive what I do and don’t change who she is?
These past few months my husband and I have been stressing the importance of our daughter telling us what is happening to her when we are not with her. I’ve told her that if kids make fun of her, tease her, or make her feel badly in any way she should come to us and tell us about it right away. I think she has taken the advice to heart because a few times when kids were teasing her she did tell us about it and mentioned that she told us because we told her to.
It’s probably as good a starting point as any.
For the past three months I have been talking to her about the changes she can expect in her body. She sees herself that her body is changing, and has asked me what it means. I’ve told her what to do if she gets her period. I’ve prepared the school. I’ve sent some products which the teacher has for her in case we need it.
I’ve explained that her body is changing and that more changes will come and we don’t know exactly when they will come. I’ve told her what it feels like and most importantly, I’ve told her it’s nothing to be scared about.
Just yesterday, I mentioned it again to her, just to reassure her, and she said, “Mommy, this is the 4th time we’ve talked about this.” She sighed and said, “I’ll be okay if it happens. I’ll tell you or my teacher and you will show me how to take care of it. Can we stop talking about it now?”
Inch by inch. I think it’s the only way.