He sat in the booster seat of the hairdresser's chair, anxious and brave at the same time. I know how hard this was for him, how much courage he had to muster to sit in the chair by himself and allow someone to cut his hair. Daniel is afraid of new experiences, and has associated fears with past ones. The first time I took him for a hair cut was for his 3rd birthday. It was nothing less than a disaster. He cried and squirmed the whole time, but, in the end, he survived it. He locked that little ditty away in the "don't do that again ever!" file.
After that, David resumed his role as barber. Daniel's "shears fear" made it necessary to engage in what he called "nocturnal stealth styling." Ever try to cut a sleeping child's hair? Just try it sometime. One side of his head was bigger than the other for 24 hours until David could get to the other side the following night.
One Saturday afternoon, I got a wild hair -- no pun intended -- and decided I was going to cut his hair myself. The only way to reduce his fear is to expose him to it. I prepped. I had to because one time I trimmed his bangs so short that it looked like I'd taken a weed whacker to them. So I watched the YouTube video of a dutiful mom cutting her 4-year-old's hair, got a shiny new pair of real hair-cutting shears (they are a must), a comb, a water bottle, a towel, a cosmetic brush to get rid of the hair that I knew would drive him nuts, and announced, "Guess what we're going to do today?!"
Since that Saturday snipfest, Daniel has had several hair cuts and each time it is becoming less scary and more enjoyable. He is learning to trust. Our hairdresser told him what she was going to do before she did it.
"I'm going to spray your hair with a little water."
"It's just water. It's just water," he says.
"Now I'm going to comb your hair."
"Comb your hair. Comb your hair," he repeats, soothing himself.
"And now I'm going to take my scissors and cut your hair. Okay?"
"Yes. Go slow," he said.
Go slow. Go slow. I've been thinking about this all day. First, it was huge that he told her to go slow. Why? Because his autism affects his expressive communication, his ability to tell us what he needs to be okay. Who taught him to say this? It wasn't me. It wasn't any of the therapists. This one came from his heart.
To this fast-paced, "I want it n-o-w" world that he is growing up in, he announces, "I need to go slow." He needs me to go slow. He needs you to go slow. He speaks for thousands of autistic children who don't have a voice, who can't say, "I can do this, but let's take it slow. Be patient with me. I'm patient with you." Daniel doesn't feel the world pressing in on him. He doesn't feel as if he's in a hurry to get something done so he can move on to the next thing. Daniel is not in a hurry. He doesn't see a need to be. It's so simple, really.
"Slow down. Take a deep breath. What's the hurry?"
(Jeremiah 2:25, The Message)
I laid on the bed this afternoon as it neared five o'clock, still in my pink bathrobe. My excuse? I've worked all day. I don't need to get real clothes on, bathe, brush my hair, you know, normal things that people do.
The truth is I didn't really want to get dressed, bathe, brush my hair -- normal things that people do. For the last many days I've been walking in this almost catatonic mental state, and yet I'm fully functional. I'm able to care for Daniel, feed him, bathe him, dress him, interact with my husband, make household decisions, communicate with three behavioral therapists Monday through Friday, keep seven cats, two rabbits and one hamster alive and relatively happy, attend church on Sunday, interact with more relatively happy people, run my business, do the grocery shopping, do a little bit of Facebooking, manage a whole lot of e-mails, pay bills (usually), read the Bible, talk to God, and the list goes on.
I know for certain that I am not the only mother walking around in a trance-like state. Multitasking is our specialty. I truly believe this is a gift from God to women. Moms of autistic children are no different than moms of neurotypical children in our ability to juggle a ten-course day. We are no different in the expression of our emotions, our love for our children, our desire for their well-being, our commitment to motherhood. But there is one difference.
Every autism mom goes through a grieving process. We grieve the loss of a dream. It's the dream we had for our child before he or she was born, the dream of who they would be -- the dream before we knew about the autism. I imagined Daniel growing up to be a brilliant attorney. I imagined him playing the violin in a packed concert hall, me in the audience beaming with pride. I imagined homeschooling him and teaching him to love the Lord his God. I fast-forward to when I'm old and he's a grown man. I imagined Daniel visiting me, him towering over me, my safe, strong son. He loves me so much. He cares for me with compassion, love and a right sense of duty. I feel safe.
The dreams have changed. Reality hits. I need to parse my words carefully here because my husband and I know that Daniel has great potential. He's intelligent, he's funny, he's silly, he's loving, and he's a quick learner. We are also realists. We know that he will always have autism. It is unlikely he will be that brilliant attorney. Understand that those dreams are a metaphor for something greater. We can't have a two-way conversation. He doesn't say, "I'm hungry." He doesn't say, "I love you." The reality is that someday we won't be here to ensure his well-being, his safety. We grieve. Please don't tell us not to.
The casual onlooker will comment, "But you have new dreams now. Better ones. Don't grieve the loss of the dream." That's bad advice. The Bible says there is an appropriate time to grieve and an appropriate time to laugh. It is good to grieve. I'm not talking about the new dreams. I'm talking about what can never be, and those dreams I had, they mattered to me. I thought my time of grieving was over a year ago after we learned Daniel was autistic. I compartmentalize my feelings a lot. He has autism? Okay, I'll deal with it. It never occurred to me that I could be experiencing grief this far out in time. But I am. My husband is. We both feel it and yet we never even talked about it.
You hear about the stages of grief. Let's recap. They are: denial, anger, bargaining, depression, and, finally, everyone's favorite, acceptance. Folks, I thought I was in the last stage. Imagine my shock and dismay to learn that I've somehow put one foot in Anger and one foot in Depression. Now, there's a thick mire to extricate myself out of. Well, well.
Yes, I am angry. I'm angry when the therapists take Daniel's LeapPad from him and say, "Uh-uh, you have to earn tokens for that, Daniel." Or when he looks forward to seeing the garbage truck all week long and Monday comes and he's told, "We can't watch the garbage truck until you do this, this and this." Get out of my house now. He's 4. Welcome to my mind. I didn't harbor this resentment before. I saw them as helpful, necessary, tough love in action. Now I just want to rescue him from the oppressors. "Leave him alone. He's only 4! You're demanding too much from him." Something has changed inside of me. Anger.
April is Autism Awareness Month. It's Autism Awareness Month every month in our house. This is a crazy, difficult, often humorous (thank you, Lord!), tiring journey we're on. I wouldn't change it for the world. I saw a bracelet on an autism website that had a charm dangling from it that said "God has this one." God is always aware of our son, his struggles, his joys, his heart. And He is aware of mine too as I hold on for dear life, dangling over Anger and Depression. He will not let me fall. God has this one too.
Selah.
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