School starts next Monday....please pause as do a happy dance...As part of our annual preparing to go back to school I take Sophie for a trim. This has not always been an easy or enjoyable process. There have been times when the hairdresser has had to stand behind a trembling Sophie, gently spray tiny bits of water on her hair and practically snip on hair at a time.
My friend Lis has the most adorable/cool haircut, it's short and sassy with a bit of edge. Sophie has become obsessed with this haircut. She refers to it as 'Donovan's mom's Mohawk'. Sunday morning she began to tell me over and over how much she wanted short hair. This is not the first time she has mentioned short hair so I took it a bit in stride. I asked her to describe what she wanted, reminded her that she would no longer be able to put it in a ponytail or have sisa braid it for her. She stood her ground. When we arrived at the hairdresser she immediately began telling her of the plan. The hairdresser looked at me with a question in her eyes, it's her hair she can cut it anyway she wants. We started to look through hair books to get a photo of the cut. We settled on Jennifer Lawrence's pixie cut, with the sides shaved Sophie reminded us. After her hair was cut and gel'd up into a little Mohawk Sophie stated that next time she wanted it dyed red and blue!
I posted before and after pictures on Facebook and received so many positive comments. I also got a few like, 'wow, you're a cool mom' 'wish my mom had been so hip'. It then occurred to me that this is by far the most typical thing my fourteen year old has ever done!!! Her doing something so typical filled me with glee. For a few years now I have watched as the kids of some of my friends, most younger than Sophie, have discovered the freedom in changing their hair. Twelve year olds with blue and pink streaks and thirteen year olds with asymmetrical trendy cuts. I will admit I have been envious of these parents sharing this fun experience with their kids. I am very much unbothered by her cutting her hair. I think its a terrific sign of growth and independence.....Best part is she can fix it herself no more mornings filled with screaming and crying, well at least no crying about tangles!
I settle into my beach chair to watch the couple in front of me as they are head towards the water. They move in a slow tentative way. First the mister goes in about up to his knees then slowly the missus inches towards him, she is more unsure and cautious. After rapidly adjusting to the temperature joy begins to spread across their faces. He begins to move his hands quickly, opening and closing them rhythmically moving his arms as if he is a conductor and the sea is his orchestra. She runs in and out of the surf constantly checking to make sure she can see the familiar stripped umbrella. Every so often he is carried off to the side by the current, she approaches and very gently takes hold of his elbow and brings him back to center. When a rogue wave splashes her in the face he howls with laughter, she smiles and secretly hopes it will happen again. Looking at them I am reminded of those elderly couples you see in the grocery store, the ones that have been married so long no one can remember a time when they weren't. I am not observing some loveable octogenarian couple re-living their youth, I am witness to something much more precious....Sophie and her friend delighting in the ocean. At moments like this they don't seem different from the other children in the water they look like thousands of other people who not only love the sea but who are also calmed by it.
I understand now that these kids may not speak or communicate the way you and I do but that they speak to one another in a language all their own.
I have been fortunate enough to behold this connection. Not many weeks ago Sophie and this young man attended a party for their other close friend. It was a big beautiful event. We soon noticed that the boy did not want to walk into the backyard where the festivities were. Sophie and I walked to the front and I told his mom that we would sit with him so that she could go in and say hello. I tried all my tricks to cajole him into the party, I even stooped so low as to bring out Emily (they all love her) to see if she could convince him. Soon after that Sophie got down face to face with him and said do you feel nervous? scared? are you afraid? He nodded his head. She put her hand lightly on his arm and responded come with me, I understand. I feel the same way. We can stay together and we wont be afraid.
This is the very same child who demanded I make her lunch a few weeks ago, when I softly explained that I had a horrible headache and that Daddy would make her lunch she abruptly smacked me on the head and said she was mad.
Seeing the tender way Sophie is interacting with her friend shows me that she has empathy
My point is she connects. She understands her friends. She is in the wonderful words of Temple Grandin, Different Not Less.
It was still dark outside on Saturday morning when I got up, I decided to get myself a cup of coffee and sit in the stillness. The moment I sat down I was draped in a blanket of sadness. I could actually feel the weight of the emotion. The feeling had a pulse to it and with each beat my heart began to physically ache.
This is not my usual state of being. I am happy everyday, not all day everyday but a portion of each day. My default is to look at the upside. Sure, the washer broke down but thankfully we had the dough to pay for repairs. I've been called perky more times than I can count, usually be some anonymous person on the other side of a 'how can we help you'? call. Sorrow of this magnitude shakes me to my core. It is so difficult for me to understand.
My mom once explained grief to me this way, it is like the ocean, waves come at you and then the tide goes out and you are on a sandbar of peace. A rest before the tide surges again.
I remember my first real heartbreak. My high school boyfriend broke up with me on Easter. I took to the couch with a vengeance. I sobbed, I wept, I was teary, by July I was up and out in the world again. In my innocence I thought this was how all loss and pain would be felt for my entire life. The shock followed by some down time and then I would be over it. I had no knowledge that as I grew there would be degrees of death, not all of it literal. I believed that acceptance would alleviate my need to grieve.
I've written before about the day Bill and I received Sophie's diagnosis, the way my heart burst into a thousand tiny pieces. I then accepted and got into action. Easy. Done. Move on.
Except life isn't the same as when I was a 17 year old heart sick girl. I am not the same.
I think I fight the grief because to me it means I am not in acceptance of what is.
My coffee grew cold and bitter as I sat, soon Bill and the girls got up, we all had some breakfast and got ready to go to the beach. As we drove to the beach I looked at Bill and with tears streaming down my face said, I can't. he reached out and held my hand. This shroud of despair hung over me as we walked to the waters edge. I felt like pitiful looking cartoon character with a dark rainy cloud over my head, sure that it was visible to all. As I felt the sun warm my skin and looked out at the blue waves I began to cry again, it felt as if a small balled up fist was clutching at my heart.
Why this degree of hurting? Why this day? I love Sophie and she is just perfectly who she is supposed to be. She has a happy life and brings me a joy unequalled to anyone else.
It's grief. I still grieve over the child I had imagined she would be. I feel a loss over what never was with her. Sports teams she never played on. Friendships she did not make. Independence on a different scale. These are the things we are not allowed to speak of or think. Once I accept her as is, all of those 'typical' wants should be released and I should embrace all that she is, celebrate her triumphs. I do honor how much she has changed and how much more self-reliant she is. Yet this broken heartedness still rears its pain filled embrace. When this happens I try to evaluate every aspect of it, I feel like a lousy mom and all around bad human. I understand the mourning of someone who is no longer physically with us but this anguish over a possibility is incomprehensible to me. I remind myself that it has only been four years since Sophie's diagnosis even though I knew things were different for much longer. Is four years enough time to fully digest this? Does it take a lifetime to allow the truth to be fully acknowledged?
Sophie is definitely verbal. 
So verbal that there are days I wish she had a touch of laryngitis just so there would be periods of silence throughout the day. She is pretty much talking or making noises from the moment she wakes up until she falls asleep. I know that there are so many parents of ASD kids that long for their child to utter one word and I feel for them. I can't imagine the pain they must be in, waiting to hear their kid utter a simple mom or dad.
Allow me to be clear there is a difference between verbal and conversational. Sophie is not conversational. She does not comprehend that to converse one person speaks, asks a question or makes a statement then person B will answer the question or comment on the statement. What Sophie does is ask questions many, many questions. she does not wait for you to answer she demands that you answer. here is a sample of the daily types of questions I am asked; Are you a girl? Is Ebbie a dog? Is it morning? Can I have chips? Can I bite the dog? Where is dad? Where is Emily? Can I have chips? Can I lick the dog? Where is dad? Is Ebbie a dog? on and on it goes. Now I understand that these are not unreasonable questions but when I am asked them several dozen times a day I get a bit worn out. After the questions come what I call verbal tics. These can be anything from high pitched squeaks or yells to curse words. This usually lasts from several minutes to an hour or more. Then we move on to the rigorous practice of her asking me to repeat what ever word or sound has struck her fancy that day. If I refuse or ask her to say it herself I am treated to more verbal tics or a popular round of whining and why don't you love me? The term for ASD individuals repeating is called echolalia and it is not uncommon. Let me tell you it gets extremely tiring. There have been times when I've thought to myself, oh great now she has Tourettes syndrome on top of everything else, but I believe this is just her preferred way to stim. She will answer questions and I can get information from her but there are no mother daughter chats or heart to heart talks. This is frustrating for both of us, she has always had a desire to connect to people and just does not the skills to do that. As for me I miss just sitting with my teen and hearing about her dreams, fears and sharing our family's history with her. Emily and I had so many opportunities do this as I drove her to and from dance classes, to friends house's or to school. I am very lucky and grateful that I had the chance to experience this with Em as I know many other parents who never get the chance. Sophie and I have had to find a way to have this closeness without the benefit of conversing in the traditional sense. I know she is wanting that intimacy when she sits next to me and sniffs my arm or hair, when she allows me to rub her arm or leg and mostly when she asks for a hug.......as I am holding her and relishing in the quiet moment she says mom! say po-nut!
