When we received Caroline's diagnosis, Andy and I decided not to hide the information and instead chose to educate friends and family about her rare genetic condition. We hoped this information would assist others in understanding her better and selfishly, for me, I hoped it would get people off my back about how we parent her. In some cases, our openness about her disability has helped others, or at least it has allowed our community of people the opportunity to ask more questions without feeling rude or embarrassed.
"Does she take any medication?
"Does she attended regular school? Is she in a special education classroom or is she mainstreamed?
Will she be able to go to college?
What does Charlotte say about her?
Will she outgrow it?
She doesn't look like she has a disability so how did you know?
I'd be lying if I told you that some of these questions haven't bothered me but ignorance is bliss and, when it comes to learning, no question is stupid, even if it comes from a place of bias (because, we all have a bias). I've never felt that someone asks me these questions to hurt me or shame me but instead because they are concerned and they care about us, and especially Caroline.
It's hard enough to share the ins and outs of our life with Caroline with those in our inner circle, but it's much harder to expose ourselves in public. Many times I have hesitated about going out in the community, especially when she was younger, and on days that I was parenting both girls alone. Yet, I'm an extrovert, and I hate being home alone for long periods of time. I always want to be moving and I like to engage the girls in the world around us. We go hiking and swimming. We go to museums and the playground. We go shopping and out for meals. Like all kids, sometimes Caroline is a cherub and other times she is Medusa.
We are fortunate to work with a team (really, a village) of people who support us in supporting Caroline. We have a behavior plan that assists us in following a protocol for situations like public meltdowns. One action step of that plan is to "peel her off of us" or to outright ignore her. We don't often have to peel her off of us but we regularly ignore her. This reaction is natural for Andy who regularly ignores me when I'm having a meltdown. (You may have heard this referred to in marital relationships as going into the cave.) Ignoring Caroline is not natural for me. Again, as an extrovert, I usually do not react by retreating. Words are my weapons and I come out swinging. If someone is pissing me off, it takes everything in me to walk away, though I am learning to put this into practice with Caroline and with many other people. Also, my maternal instinct gravitates toward solving the problem or making her pain go away, because, when she is tantrumming, she is in some sort of anguish. All kids are. They are doing everything they can to process their emotions and it hurts and it's hard. Ignoring my child when she is struggling feels terrible.
And I know it looks terrible. As parents, most of us want to be helpful, especially to children. If we are at crowded museum, or mall, or park, it is inevitable that someone will stumble upon us following the meltdown protocol. Yet, they have no idea what is going on. For example, we could be at an outdoor event. Caro may be screaming at the top of her lungs because she thought the food truck served hot chocolate and we find out that it is only serving coffee. We tell her we promise, when we leave, we will stop at the gas station and get hot chocolate but we won't do that until we leave. We then set a timer and tell her that she has 10 minutes to get to the "green zone" and if she can't, we will have to leave and we will not be able to have the hot chocolate or enjoy the event anymore. As we watch the timer, we walk ahead of her, keeping our ear open to listen to her yelling at us, and trailing us by about 10 feet. The entire time, we know where she is and what is happening in the situation. We are taking deep breaths and looking straight ahead, trying to keep our own cool and praying that she will chill the F out. However, to the woman standing 15 feet away in the crowd sees a confused, screaming and crying child and no sign of a parent at arm's length. She comes running over to Caroline and asks if she is ok and if she is lost. Because most people are not expecting a seemingly "normal looking" kid to be growing snakes out of her head or turning into the Incredible Hulk. They also just don't see us, or see us reacting to her, so they are concerned that her meltdown is because she is lost.
All makes sense, right? But, because I am stressed out, and grinding my teeth, sweating, trying not to cry, and just wishing we could do anything without a meltdown, I whip around and say loudly and tersely to the woman, "She has a disability and she's having a tantrum. She's FINE!" And then, the poor woman, who looks shocked and wounded, retreats, wondering what the hell just happened and I feel like a a-hole because I'm a bad parent and a bad person for reprimanding someone who was trying to be helpful.
After years of this happening over and over, I mentioned it to our behavior specialist, who, like the magician she is, shared these wonderful concern cards with me. They look like a business card and they say this: "We would like to thank you for your concern. We are making every attempt to allow our loved one, who is affected by autism, to experience everyday activities that others may take for granted. Sometimes behavior can be an issue." Now, to me, it doesn't matter that she has a genetic deletion and is on and off the autism spectrum, depending on the year and the DSM-5. I don't have time to explain the details of the disability at this moment. What matters is that, without a word spoken, in the midst of a meltdown, we can hand a card to someone, like that poor woman at the event, and provide important information in an instant and most importantly express exactly what we want others to know when we are supporting our special needs children:
All we want for our child is to help her experience everyday activities that others take for granted.
Yesterday, we dropped Caroline off at an overnight camp and my heart's been in my throat every since. Our fingers are crossed that she enjoys it and stays for the duration of the camp. But maybe, she won't. It might be too much for her- too much sensory overload, or she might break their code of conduct. Regardless of whether she stays five nights or two, we are so proud of her and want more than anything for her to experience a childhood activity that so many other children experience, one that is often a most cherished, milestone moment of childhood.
And trust me, we aren't taking the parental milestone of a kid out of the house for granted one bit.