by Band Back Together | Dec 4, 2010 | Asperger's Syndrome, Autism, Childhood Bullying, Coping With Bullying, Fibromyalgia, How To Heal From Being Bullied, Parenting, Rheumatoid Arthritis |
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
by Band Back Together | Nov 9, 2010 | Anger, Bullying, Childhood Bullying, Coping With Bullying, Gender Nonconformity, How To Heal From Being Bullied, Intersexed, Transgender |
Get out! You’re a girl!”
The shout rang out from the men’s room in the Chicago airport, and I heard it all the way in the women’s room next door. My husband had taken our son, Sam, who is seven, to the bathroom between flights. It was not the first time I’d heard such a shout. I ran out with my daughter to find out what was happening to Sam.
Sam looks like a girl. Even that day—wearing khaki pants, a blue t-shirt, and grey sneakers—his long hair and pretty face trumped his boyish clothes. People inevitably think he’s a tomboy. His natural femininity makes boys in restrooms across America feel justified in screaming at him, believing that their knowledge of his gender is greater than his own, lunging, as one boy did at a New York airport, ready to strike until my husband stepped in. Kids in his own California elementary school tell him he’s in the wrong bathroom, ask him if he’s lost or stupid, and, if he stands up for himself and says he really is a boy, tell him to drop his pants and prove it.
A few years ago I read an article by New York Times writer Patricia Leigh Brown. Brown wrote about adult transgender and gender-nonconforming people who face discrimination when they try to use gendered public bathrooms. I had no idea that it would one day be relevant for my own child
by Band Back Together | Nov 3, 2010 | Bullying, Childhood Bullying, Coping With Bullying, Gay Is Okay, Gender Nonconformity, How To Heal From Being Bullied, Teen Bullying, Transgender |
This post originally appeared on my blog on October 17, 2010
A while back, I was Facebook-friended by someone with whom I’d gone to elementary school, a woman I hadn’t seen in 15 years. In that same week, I was friended by another schoolmate, a man I hadn’t seen in 25 years. I’ll call these two people, who are not Facebook friends with each other, Leia and Mork.
I was happy to be back in touch with Leia and Mork. Leia and I, and Mork and I, in separate sets of messages, chatted in the way that long-lost friends do, telling each other where we live, how many kids we have, what we do for work. We exchanged several messages. A few messages in, both Mork and Leia asked me what sort of writing I did. And so I told them, as simply as I could: I write, under a pen name, about my son, who likes to wear a dress.
And you know what? Both Leia and Mork never wrote back.
Maybe it was a coincidence. Maybe the conversations just dropped off in the way conversations eventually do, and it just happened to be after I dropped the pink-bomb on each of them. Maybe they both got busy, sick, or their computers went on the fritz.
Or maybe they got freaked out.
Because people sometimes do.
I notice that the tomboy in Sam’s grade who plays on the boys’ soccer team is cool and socially in demand, while Sam doesn’t get invited to many birthday parties. Sometimes people look at us strangely when we disclose that Sam, the long-haired kid they’ve taken for a girl, is a boy. Sam’s school administration can talk eloquently about diversity and acceptance up and down, except when it comes to gender, when they get all panicky and quiet.
I make it my business to talk to as many people as I can about Sam (while being careful of his privacy and his safety), to make gender nonconformity something that gets talked about, not something swept under the rug. Because when we hide something, we make it shameful. So I open my mouth, maybe even more than I should, and occasionally I lose an audience member or two, like Leia and Mork.
But maybe the next time they hear about someone’s son who wears a dress, they’ll remember that the woman they kind of liked back in elementary school mentioned something about her son wearing a dress, and maybe that will make it a little bit more OK.
by Band Back Together | Oct 26, 2010 | Adult Bullying, Anger, Bullying, Childhood Bullying, Coping With Bullying, Emotional Boundaries, Guilt, How To Heal From Being Bullied, How To Help With Low Self-Esteem, Loneliness, Self Loathing, Self-Esteem, Shame, Stalking, Teen Bullying, Teen Rumors, Cliques, Gossip and Hazing Resources, Teen Sexuality |
We were the best of friends through high school – “The Three Musketeers”. We were going to be best friends for life. Sometime during senior year, they started changing. Drinking. Smoking. Having sex with anyone who looked their way.
That wasn’t for me. I chose not to party with them. They teased me about it, joking that I was the “good” one.
Not long after graduation, there was a situation where I chose my family over them. It all blew up, and the bullying and stalking began.
They prank-called me. They pitted our mutual friends against me with ridiculous lies. They showed up to my workplace and said they were going to kill me. They sat behind me in college classes and loudly whispered to others about how horrible I was. How I was an ugly, sad person. How they had just “pretended” to be my friend for all those years. They told all my secrets to anyone who would listen.
This continued for almost two years.
After the death threats at my workplace, I let them know that I would take out a restraining order if they ever contacted me again.
I blocked them on Facebook. I graduated from that college and went to another one in a different town. I changed my phone number.
Though I haven’t heard from them for years, I still feel sick when I think about them. They caused me incredible stress, self-doubt, and loneliness.
I don’t talk about it much, because I don’t want to give them the pleasure of knowing that they got under my skin. I left out many details of the story, and details about who I am, just in case they find this.
I’m now a happily married woman with a great career, an amazing husband, and a great group of true friends.
But I feel like I’ll always be looking over my shoulder, waiting for their next move.
