It’s back to school time and this morning LittleTDJ headed off for his first day. He’s returning to the same school that he attended in the spring of this year but he has a new teacher. It’s his first day of school without his dad there to kiss him and cheer him on. It’s the first of many, but the sting of the first is definitely strong. My heart aches and I wish I could make him appear to put an end to this awful, cruel joke. **deep sigh** I’m trying to take comfort in the idea that MrTDJ is smiling upon us and watching over our steps. Have a great day sweetie!!!
As a young child, I was always mothering my younger cousins. I’m a nurturer and it seemed that I had an incredible amount of empathy even then. I’ve been overweight since I was about 10 and one by-product of that has been my empathy for others. Being judged by the amount of weight you carry is such an awful feeling, I went out of my way to not judge people based on what I saw. Walking in someone elses shoes is an incredibly hard thing to do, and frankly, most of us don’t do it well at all.
This past weekend, while at the grocery store, Little TDJ and I encountered two very ignorant and vocal women. We exchanged words and our interaction left me feeling hurt and angry. I started writing this post on Sunday, but I was still too angry. Realizing that my anger would do nothing to help the situation, I decided to try to use the moment to share a bit of insight.
There are many who fight about using the terms autism or autism spectrum disorder, they fight about calling it a disorder, disease or disability, they fight about “managing it” vs “curing it”, they fight about whether vaccines cause it or not, etc. I simply fight for my sons right to live a full life. I fight for him to be treated with the same kindness and respect that we are each entitled to.
The grocery store can be an overwhelming experience for many children with autism and Little TDJ is no exception. Because of the bright lights, loud sounds, loads of people and his discomfort with knowing “what comes next”, a supermarket can be the setup for a perfect storm. I try to shop without him, but that’s not always possible. So to prepare, we look at picture of markets and watch a few minutes of a cartoon like Team UmiZoomi as they take an adventure to the supermarket. In the car on the way there, I tell him calmly that we’re going to the market several times and encourage him to clap about our trip.
On Sunday, we set out on a quick trip to pick up a few items. Our trip started off pretty well. My son rode in the cart happily and had fun by announcing the number to each aisle that we passed by. Little TDJ is in love with numbers and knowing their patterns is like a soothing balm for him. He understands numbers and delights in predicting/remembering their patterns. In his delight, Little TDJ shouted the numbers very loudly. Yup, I’m all about full disclosure. His voice is loud, and sometimes he even yells. My son didn’t babble much as a baby until about 15 months and he uttered his first word just before his 2nd birthday. He’s so excited to have found his voice and he wants to be heard. Since he’s not crying and we’re not in a movie theatre, library or Catholic church, I let him enjoy himself. I do encourage him to “talk softly” by placing one hand over each of my ears, a gesture that he understands from school. Right now however he’s too excited and he can’t. **shrugs** We shop on.
Once done, we get into a short line and prepare to check out. Little TDJ is now focused on reciting the numbers to the check out stations. We are at line/stand 7. Unfortunately for us, lanes # 6 and 8 are not open, therefore the numbers above the lanes were not lit. As Little TDJ counted down from check stand 18, after speaking the number 9, he got to 8 and paused. Since the 8 wasn’t lit, it flustered him. It was an unexpected scenario and one that he was unprepared to handle. He looked at me and I rubbed his back to soothe him, while nodding before speaking. “It’s ok Little TDJ. The light is off. What number comes next?” He turned away from me and started again at 18. We moved slowly in the line and I willed it to go more quickly because I knew my son was on the verge of a possible meltdown. He paused again when he got to 8. His eyes welled up with tears and he pointed at check stand 8 accusingly. I tried to speak to him softly and distract him with counting the keys on my key ring, but he wanted none of that. He began to shake, cry and he asked for his “Bink” aka pacifier.
So, mouthy ladies 1 and 2, decided to start a whispered dialogue about my son. Y’all, I can ignore most things from the mouths of strangers and I normally do, however this little convo was intended for my ears.
Mouthy 1: You could hear him screaming all through the store, I thought somebody was attacking him or something.
Mouthy 2: And look at him now with a damn pacifier in his mouth. Child that big has no reason for a damn pacifier. If he can say his numbers, what he need a pacifier for?
Mouthy 1: ***laughs loudly*** You ain’t neva lied. Must be retarded or something, and the mama too. That’s what’s wrong with kids today, their mamas don’t know how to raise ’em right.
I swear it was the “r” word that got me. I hate the word and find it highly offensive. A few months back, there was a discussion over at Creole in DC’s blog but I didn’t chime in. I don’t know about you guys, but sometimes I read interesting posts at other sites and can’t quite get my thoughts together at that moment to write the kind of response I’d like to write. I didn’t even want to include the word in this post, but I wanted to convey things the way they happened.
A quick internal discussion ensued. Did I need to say something or could I let it go? I know that my son does not suffer from mental retardation, nor do it. Was it important to let those women know? Aside from the laughter and scorn, I heard judgment in their voices. Did I care that they were judging me and making a snap determination of my parenting skills? And if I did care, why? The people who know and love Little TDJ and myself know what kind of child he is and what kind of mother I am. We’ve discussed his usage of the pacifier thoroughly with his medical team and we’re all on the same page. Why was I so upset with two strangers whom I would never see again?
I could come up with a really long explanation but here’s the quick and simple truth – their comments weren’t nice and they hurt my feelings. My son isn’t yet able to understand those kinds of conversations, but when he is, I’m sure those comments would have hurt his feelings too. I was offended for Little TDJ, for myself, and for other special needs parents and children. So, I let loose on them. In my head, it went something like this:
But, in reality, I spun around and said, “You don’t have a right to know, nor do I have a responsibility to educate you but I will so that someone meaner than me won’t whoop your asses one day. My wonderful son has autism. Neither his counting or sucking a pacifier to calm down are any of your f*cking business. He’s not retarded but clearly you’re both stupid as hell. Watch your mouths and mind your business!” I was shaking when I finished. I whipped back around and paid for my groceries. From behind me, four other patrons were doing this:
Once Little TDJ and I got into the car, I thought of a million other things that I could have and should have said to them. But, in that moment, I was too emotional and I’m lucky that I was even able to be that coherent.
I recognize that we all people watch. It’s human nature. We notice things and we make assumptions. Then sometimes, we take our assumptions a step further and make judgments and often, when in the presence of others, we turn those judgments into jokes to be shared. I’m not the moral authority on anything, but I suggest using more empathy and I encourage folks to not be so quick to make assumptions and harsh judgments.
I’ve been blogging since November of 2006. Wow. Really?? Yes, really. I had to go back to the archives to confirm the date. I never actually thought I would blog this long, but I love getting my thoughts out. An unexpected by-product occurred when I started “meeting” and getting to know other bloggers and commenters. I’m one of those bloggers that walks the line between anonymity and being known. I started off completely anonymous, barring my initials of course, then along the way I met other bloggers who’ve posted my picture and name on their sites, with links back to me my site. No biggie, I’m not wanted by law enforcement. Eventually, family and friends who don’t blog asked me to post my blogs to facebook. I complied without giving it too much thought. Not quite so anonymous anymore, huh?
I’ve been having an internal debate over a few issues that I don’t speak about on the blog. Then two things happened – Sunday’s “Stream of Conciousness” topic was “What are some things you wish you could blog about but can’t?”. One of my blog buddies, Rose’s Daughter, opened up in her post. I felt myself leaning toward publishing a draft that has been sitting for months. Yesterday, the Centers for Disease Control released new findings regarding autism in America. I sat at the computer this morning and started typing.
In January 2011, my fantastically happy, rambunctious, clever two-year old son was diagnosed with autism spectrum disorder (for the purpose of this post, I’m simply going to refer to it as autism) I’d never met anyone with autism and it simply wasn’t something that I heard discussed often. Of course I knew it existed, but like most people, my only real point of reference was Dustin Hoffman’s brilliant performance in “Rain Man“. Announced yesterday, 1 in 88 children (1 in 54 boys and 1 in 252 girls) in the US have autism. One in 88 children? One in 54 boys? Think of 2 elementary school classrooms. At least one (if not more) of those boys will have autism.
Thankfully, we noticed some things that didn’t feel quite right at a very early stage. For a disorder like autism, early intervention is the key to providing the best therapeutic and educational opportunities. LittleTDJ has been blessed with some of the best therapists and teachers. We are so very honored to have him in our lives. He’s teaching everyone around him that labels are unimportant as he continues to exceed all stereotypes and preconceived notions regarding his diagnosis and his future. My son’s diagnosis is not the dark, gloomy cloud that I feared it would be. Rather, he’s brightening each of our days with his unique ability to see the world in a truly different way. In fact, his charismatic personality and engaging smile have thrust us into the forefront of some autism awareness activities such as participating in the production of educational videos and commercials. I decided to share with my blog family because I think it’s important to give a voice and face to this disorder.
I’ve never posted a picture of myself or my family on this site, but I’ve decided that today is the day. I’m delighted to show my blog family a picture of Little TDJ. He is the greatest joy in my life. And today’s the day that I ask y’all to do something for him. For our family. For families around the world.
April is Autism Awareness Month and April 2 is World Autism Awareness Day. Light It Up Blue, in its third year, is a unique global initiative by Autism Speaks to help raise awareness about the growing public health concern that is autism. Iconic landmarks around the world will Light It Up Blue to show their support.
What can you do? Well, I’m happy you asked. We need your help in shining the light on autism. You can mosey on over to Home Dep.ot, Low.es, or Targ.et and grab one, two or ten blue lights. Change the bulbs on your porch/patio and shine them brightly on April 2. You can wear an item of blue clothing. Heck, leave the bulbs in all month and wear as blue as your own. And, if you get a chance, do a little reading about what autism is and what it isn’t.
Having autism is only one part of who my son is. He has blessed and enriched our lives beyond measure and he’s just 3 years old. Together, my family and I will be working to shine the light on autism in America, especially amongst minorities where children are diagnosed at lower rates and at higher ages. I’ve decided to start a series of posts related to autism and how it is affecting our lives. Not sure how regular it will be cause y’all know I don’t ever want to feel pressured to blog.
I believe that LittleTDJ was a unique gift bestowed upon me from God. He hugged me this morning and issued one of his favorite requests, “10 kisses please”. How could I resist?
Why aren’t more people talking about autism? I don’t know. I do know that the initial diagnosis hit me like a sledgehammer and I needed time to adjust. Time to conduct research, time to get my emotions in check, and time to get myself ready to face the world on behalf of my son. Has autism affected you personally? Do you have any experiences that you’d like to share? Do you have any questions regarding autism in general? Ask away and I’m happy to answer to the best of my ability. Please don’t utter the phrase, “I’m so sorry” or I’ll ban you from the blog! =)