What's Your Name?

Miss C, my lovely daughter, has a lot of questions. She picks just one (for about two weeks) and asks everyone she meets this question. Everyone. Everywhere. Here are a list of her questions in the past:

Do you have a dog?
Do you have a cat?
What is your job?
What is your favorite color?
Do you have kids?

These past few weeks it has been "what's your name?" Wait staff, cashiers, librarians, strangers in the park, and today, a doctor. (Who was slightly offended at the question and told her she could call him Doctor.) Eyeroll. Most people immediately soften, smile, say their name, and then she rolls out hers quickly enough that I get a quizzical look and I translate for them. But what really touches me is how she touches them. Up until that moment we are all following a script.

Can I help you?
What would you like to order today?
Will that be all, mam?
Have a nice day.
Thank you for shopping.

But she is having none of it. She wants to know their name. She wants to know who they are. She wants to make a new friend. Social conventions and cues sometimes escape her. And while that may complicate her life occasionally, it gives her wonderful freedom to be authentic. To be honest. See, unlike me, she is genuinely interested in the person on the other side of the counter. I just want to make my transaction and move along. I'm busy. I'm educated in social conventions. I know the words you are supposed to say; hello, good-bye, how are you, fine thank you, have a nice day. She knows that a) she is a person and b) they are a person. Something we sometimes forget.

I know that the guy who checks us out at the bookstore has two chihuahuas. I know the nurse at our pediatrician's office has three boys. I know that the lady walking in the park is named Summer and her dog is named Windsor and he loves to fetch and swim. I know that Courtney at the grocery store wants teach children, but she is a little afraid of the parents. I know the girl who helped her find the right fashion glasses just got back from Mardi Gras and regrets dyeing her hair purple and pink. I know the look on a police officer's face when she ran up to him in his patrol car on Christmas parade night and said "please be safe, please stay safe." I saw him tear up and heard him say, "that is the sweetest thing anyone has ever said to me."

I know a little more about what really matters than I did yesterday. She is teaching me. She knows what matters. I think she always has. 

Questions I get asked often. 

Question: Why are autism rates rising so rapidly? That seems kind of high, like 1 in 80 or 100 now? 

Answer: I have no idea. (I have to fight being on the defensive because when I'm tired/cranky/down I hear: are there really that many kids with it or is this just another medical fad? Does your kid really have it? Most people are just benignly curious though. I hope.) Really, really smart Ph.D. types are mystified by this. Highly motivated moms and dads haven't figured it out either. I can tell you that after sitting in my daughter's classroom of nine kids, every one of them needs to be there. All of them. And she is in just one of two classrooms in a very small school. It is a problem. Truth is, I'm no expert. I'm just a mom. 

Question: Do vaccinations cause autism?

Answer: Nope, not going there. I'm either pro or anti- and you are either pro or anti- and I'd like to stay friends. Next question?

Question: Have you seen the Temple Grandin movie?

Answer: No, my library lost it. I've read a few of her books though. 

Question: Have you tried x supplement or y diet?

Answer: Sigh. Here I start fighting the urge to back away slowly. Is someone trying to sell me something? Have they just read a book recently that purports to be a cure-all? Are they offering to come and cook for me for free? (The last one has never happened). Most people are trying to be helpful, but don't realize that parents have kept pretty up to date on stuff and have a handle on it. 

Question: What is ASD?

Answer: Autism Spectrum Disorder. There are entire webpages dedicated to defining it that do a better job than I can. PDD-NOS is the designation give to individuals with some ASD traits, but not all. ASD is an umbrella that covers both autism and Asperger syndrome.  

Question: Don't kids with autism lack empathy?

Answer: Not mine. Not at all. She can hear a weeping toddler from across the store and we will talk, talk, talk about how she wants to help them. Yes, they have a mommy, yes she will take care of them. At a pool once, one darling little child had walked the skin off her toes on the concrete bottom. I couldn't drag my child away until the mommy fixed her. "Can I pet her" "awww, poor little baby," "it is OK, it is OK," she fussed over her and loved on her while I watched closely to see that we weren't stressing the mom. She will feed our dog and lizard--overfeed--out of the anxiety that they might be hungry. She is deeply empathetic. 

Question: What do they do for autism?

Answer: A lot. Speech therapy, Occupational therapy, Physical therapy, ABA therapy (Applied Behavioral Analysis) and a ton more that I've either forgotten the name to or haven't heard about yet. And they all are very, very expensive. The public school system provides a lot of services for free though, thankfully. But none of these are worth as much as patience, prayer and calm loving parents and siblings. 

These are the questions about autism that I call "routine". They are the typical conversation starters and I'm pretty cool with them. I'm dying to tell you the outrageous comments and questions that I've gotten. Still debating if I should or not. 

The thing I feared most--

   is giggling in the other room with her brother. Yes, I feared my daughter more than anything. Hang on. I will tell you all about it.

I've had a few fears over the years. When I was younger it was that my father would die. It might have seemed irrational at the time, but since he had lost his father young and unexpectedly and because he was my stability and source of love, it was what I feared. Then I got older and started dating and entered into the really scary territory of stuff that can really screw up your life, I feared picking someone who could one day, just decide to take off, or become a complete jerk or, again, die on me. But God and I managed a deal where I promised to let Him pick the guy (or be happy single) and He would be with me no matter what. And, of course, wound up with a guy better than I could have dreamed. Then came the new world of worries--children. Somebody once said, "having a child is like letting your heart walk around outside you." Yes, yes it is. But I hadn't gotten there yet and I just feared just one thing: autism.

This fear came about because of several things. First, a lack of understanding about autism. I assumed they were little human beings completely devoid of emotions that spent a lot of time doing weird stuff, making weird noises and generally ruining their parents lives. Not that they weren't worthwhile creatures, it was just that I didn't want one. For one reason, I was afraid I wouldn't love them. I was afraid that a child who didn't show love for me would be difficult, if not impossible, to love back. Now, I believed in unconditional love. I just didn't know I was capable of it. Mostly because I hadn't been a parent. Not yet anyway.

So all the other fears of impending parenthood paled in comparison to that one. And as I had two boys who immediately burrowed their way deep into my heart, each before they were born, the fear started to fade. Now I knew that I would love them no matter what. Anyone who has had a toddler knows about unconditional love because they can truly be nasty little creatures. They will pick the day you are at your wits end and take you for a ride on the crazy train. And you will still feed them, love them, change their unbelievably smelly toddler diapers, wipe their noses, and read them a story. Because it is what you do. So the unconditional love thing was no longer a fear.

But I feared disruption. Yes. I feared things being hard. I fear things being really hard. And I'd seen those kids and their patiently exhausted mothers in waiting rooms as I waited for my child to get his slight speech delay fixed. And while I really admired them, I really had no desire to join them.

And then I did. I did join them. I didn't know it all at once. Some mothers do. Some get a diagnosis like a slap in the face. And some of us, especially parents of girls, learn it more slowly. Somewhere between the missed milestones, and the repetitive behaviors; between the sleepless nights and the constant unanswered questions, we begin to know. I think it was the second time she had crawled into a fire ant nest and wordlessly, calmly, began to pick them off herself without a single cry (over 40 stings--and just one will make a grown woman scream and want to tear off her clothes in public to find the ant--true story) I began to know. I think it was the time she had painted her room windows, walls and floor, again, with the unmentionable and I was so tired that I just put her in the tub and locked the door to her room until my husband could come home and help me, I began to know. I think it was the gentle sympathetic look on my pediatricians face as she made yet another referral for therapy and a specialist, that I began to know. I think it was the time that for the 100th time, (it seemed) she insisted on the moment I opened the front door (for the light to stream in the storm door) that she must have the phone book, the the pizza cutter and the basting brush, lined up before her as she gazed out, I then knew. 

(And let me just lovingly and firmly stop any of you who might be saying "my kid does this too." Don't just don't. My boys did all kinds of stuff that made me want to cry or run away. But they do not have autism. The intensity and and frequency of these behaviors, the constancy of meltdowns and stress is what divides the high demands of regular kids from the relentlessly exhausting and bewildering world that parents of autistic kids are suddenly overwhelmed with. The perfect watchfulness we must maintain to keep them safe and in the house. The multiple sensory problems, the impossibility of meaningful communication and the utter inability to know what the heck is wrong with your child is something I will never be able to describe. So please, don't invalidate me or any other parent of a special needs child with that phrase.) 

My life started to get hard. And then I toughened up. A little. I gave up a lot of stuff. I gave up a lot of me. I gave up thinking that my life would be easy. I even gave up the expectation that I would be happy. And I wasn't for awhile. It wasn't that I was bitter or had any philosophical unhappiness, it was just the grind of exhaustion, frustration and lack of answers and help. It was hard. Really hard. But that little deal I struck with God really paid off. I had a great parenting partner who never once complained when I bolted out the door for an hour of peace at the library even after his hard day at work. I had wonderful boys who loved their little sister and actually helped, even at their young age. I had a friend (Dixie), who was scared of nothing, step in and love my little girl like her own and give me breaks when I desperately needed them. Then I moved to a state with a good public school system for kids of special needs and really got help. Teachers and psychologists who not only understood, but gave me hugs and told me I was doing an amazing job. Who came up with behavioral plans for me to make school easier and at school to make home easier. I met mothers of other children with autism who can read my mind and heart without a single word and we can just sit together and laugh. 

And, though it took me years to see it--to feel it--I found the thing I had feared most to be the greatest blessing in my life. I found out that children with autism do love, very very much. They just express it differently. I found freedom in just not caring what some huffing person at the store might think of my daughter's fit. I just judged them. Kidding. But there is some truth to it. How someone treats me is a reflection of them, not me. Took me nearly 40 years to figure that out. I quit worrying about stupid stuff, like how I looked or if I was left out of some social circle. Stupid, stupid stuff. I quit worrying about me and started worrying about her. But that got too hard so I just learned to trust that it would all work out somehow and today had enough trouble and God knows the end from the beginning and nothing, absolutely nothing comes as a surprise to Him. 

I learned that He didn't do this to me. He didn't make anything bad for me. He gave me a sweet daughter who I love very much and who, yes, loves me very much. (I know, because just last week she crawled into bed and told me twice, for the first time ever, that she loved me "very, very much." Yep. I cried.) I learned that He uses the bad stuff that happens (and yes autism is bad stuff--for her--she got a raw deal and I hate that) for good.  Because the thing I feared most, happened to me, and I fear no more.