I've started writing so many times in the last few weeks. And then stopped. Emotionally I've been drained. And writing, which usually helps me, seemed like such a daunting task that would open wounds that were just starting to heal. Well, I'm still not quite ready to write about that stuff (and if you haven't seen my recent facebook posts... just to give you a preview of future blog posts and to not be so cryptic ... my dad died 6 weeks ago and we had to put our doggie to sleep last week. So death and grief has been on my mind a lot). But I do need to write. So, here goes... And here's my disclaimer... subject matter in this post is of a sexual development nature.. so if you are uncomfortable talking about or reading about stuff, then you should probably skip this post. And, just in case you all have forgotten how I write - I write like I talk, and I write like I think. Which usually means I am fragmented and all over the place. This post is no exception to that. :) Plus I'm a little rusty.
I'm wondering if anyone has guessed already what this particular post is about. Autism. Yes. Vicki. Yes. Development. Yes. Puberty. Yes. And for those of you who know Vicki quite well... you may want to sit down. Yes. Vicki got her period. How's that for being frank? It's not like I should have been blindsided. And if anyone had been reading my posts in April, I think I posted once about taking Vicki to see an endocrinologist to get some questions answered and to talk about precocious puberty. Oh yes, puberty has been on my mind for the last few years. And if I may be honest, I have been scared shit-less about this day. I knew it would come. I wanted to be ready. I tried to be ready. But. I wasn't ready. Is any mom ever ready for her daughter to grow up? I am choking on the words, ' become a woman.' And, here I go jumping all over the place. Sorry...
You know what makes me mad? Here I am talking about how Vicki getting her period makes me feel. How I am handling it. It's not about me. It's about Vicki. And how Vicki feels. And how Vicki is handling it. Do you remember the first time you got your period? (And... if there are guys reading this... sorry... so for you, do you remember how you felt the first time you had to go to Target to buy sanitary napkins for your girlfriend/wife?) Were you scared? What did you think? Did you understand what was happening to your body? I know I didn't. I don't remember where I was, or exactly how old I was, or what I was wearing... I do, however, remember asking my mom questions. And I remember her comforting me. And, oh, what tears a little hole in my heart is not knowing how Vicki feels or what Vicki is thinking. I just look at her and look into her eyes and want her to know that I would do anything for her. I want to answer any question that Vicki has. But Vicki can't ask the questions. How do I explain everything that she can't ask in a way that will comfort her and know that everything is okay? And that this kind of bleeding is 'normal'. Sometimes I just want to scream. Sometimes I just want to cry. Sometimes I do both, and sometimes I do both at the same time. It's not fair! It sucks! (To lighten the mood a bit... I reread this and wondered if I am talking about Vicki or if I am talking about menstruation in general. ha. )
Wow. I really am sucking at this writing thing tonight. Sorry.... So... I got the call yesterday from Vicki's teacher at school. And I was so concerned. And so blindsided. So scared for Vicki. Wanting to go in and sweep her up in my arms, which, technically is very difficult to do now, because she can almost look me eye to eye. She's at least 5'1" and I am 5'3 and 3/4". I need to put 3/4 in. :) And at the same time I was so very mad at myself. What a failure of a mother I am. I wanted to ask all of the right questions and have everything neatly written out. Stuff done. So Vicki was 'prepared'. So I had questions answered. So I knew exactly what I would need to do for Vicki to help her. I wanted to know what was in store for us. I thought I was doing the right precursors... asked doctors, went to specialists, googled the heck out of autism and puberty for girls. And I came up with not a whole lot. I felt rather silly for asking the questions I asked this past spring when we took Vicki to the doctor. I felt like she thought I was rushing things and asking things that didn't matter now. She said we had at least a year and a half. Well, technically, now, it would be a year. I never did get the results of the testing they did. That's what makes me so mad. I get all gung
So what did happen yesterday? How did Vicki react? What did we do to help her? Well, I did nothing. Her teachers, however, were amazing. They did everything. (PS... I love you!! I can never thank you enough!) And, secretly, well, not so secretly, since I am blogging about this... I am glad it didn't initially happen on my watch. :) I was on the phone with her teacher shaking and trembling. They took care of everything. All I did was pray. And google. And think. And call doctors, behavior analysts, and my mom. While Vicki was at school, I was at Target. Going up and down the feminine product aisles and brainstorming... Which kind should I get? How should I approach this? What kind of reinforcer should I think of?
To make a long story short, well, not so short... after much deliberating and talking with her teachers and other professionals and gaging Vicki's reactions, this is what we came up with... Vicki does amazingly well with visuals. Do you remember the communion visual story I made up for her first communion? Anyway... we thought visuals were the way to go. So we made special potty books for Vicki. On the front are pink hearts and Vicki's name and the potty symbol. On the inside we have strips of Velcro with a sequence for Vicki to follow. This may sound gross, but to Vicki, she needs to be able to understand clean and dirty. So I took a pad and put red food coloring in it to simulate blood. I took a picture of it. So when she sees that picture.. 'red spot - time to change pad', we've associated that the pad is dirty and gave it a color for Vicki. Then the sequence of taking off the pad, wrapping it, throwing it away, wiping, putting a clean pad on, pulling up pants, washing hands, and getting an amazing reinforcer for doing an amazing job. And there you have it. It's not as cut and dry as that. But that's the basics. This is only day 2, remember. I'm sure there will be lots of trial and error and bumps along the way. But, on day 2, today, I think I am finally forgiving myself for not being 'prepared'. Because, who is ever really, really, prepared. I know a few, but come on... Realistically. And, to make myself feel better... until it actually happened, we didn't know how Vicki would react.
Here are a few things we are learning. 1. Vicki is amazing. (well, I already knew that, but, oh my goodness... this just reinforces it.) Not only did Vicki start her period yesterday, but she also lost a tooth. And she is taking it all in stride, unlike the mommy who is, I think, still shaking, as she writes this. :) 2. Vicki likes to be clean... So something that I didn't think of is that she would try to wipe and wipe until the toilet paper was clean. Well, that won't happen and we didn't want her to wipe too much and become uncomfortable. So, we limit the wiping. A picture of toilet paper 1x and a picture of a wet wipe 1x. And then the pad. 3. The hardest part for Vicki, it seems, is pulling up her pants when the new pad is on. Maybe she doesn't like the feeling of it... That's where the behavior is coming in. So we talk to her and tell her what is coming up next and go through the pictures and steps with her. And, thank goodness, there was her favorite- baked potato bar at lunch yesterday. Never underestimate a good 'first / then'. And, thank goodness for chocolate. And for the power of waiting a behavior out. 4. Pairing the chocolate with a new princess stamp set is helping lots. She really likes it. And, today, even put her chocolate down to stamp her name. :) 5. Pink stuff is good. Pink girly stuff makes the other girl stuff less scary. I bought the always pads with wings because they had cute little pink wrappers. And I bought those little baggies that come in a container that you hook on your belt when you walk your dog... because they are bigger than what you normally wrap a pad in. They smell good. And, yep, you guessed it. They are pink. And Vicki thinks they are cool. 6. Did I mention that Vicki is amazing? She hasn't cried. She hasn't 'freaked out'. (like mommy). She's just going with the flow. Oh, yuck. No pun intended. :)
I'm sure I will have a lot more to say in the next few days about this. But for now, I am grateful. Grateful for the support. From my husband. From Vicki's teachers. From Vicki's aides. From my mom. From my friends. And from Vicki.
One final thought. Another thing that has been on my mind. Vicki is only 9. I understand that some girls get their periods earlier than others. I developed early. But not that early. I am still so scared. She's 9. She's almost as tall as me. She's got the body of a woman. But she is my baby. My baby girl. And, yes, she is my baby girl who has autism. And this is my 9 year old baby girl who has autism and now has her period. And that opens a whole new topic for discussion. Another time. I will end tonight with one of Vicki's favorite singers. Britney Spears.
I'm not a girl,
Not yet a woman.
All I need is time,
A moment that is mine,
While I'm in between.
I want so much more time. So many more moments. And I am so, so very blessed to have Vicki.
And I want to say how proud I am of her. She embraces life and everything it throws at her with such grace and beauty and dignity. I am in awe of her. My beautiful 9 year old with autism teaches me more and more everyday. xoxo
