learning to live and love from a new perspective

Archive for May, 2013

What Time Is It, Mr. Fox?

On Friday, I arrived a few minutes early to pick up G from school. They were not in their usual spot. The playground was wet, so the group was playing “What Time Is It, Mr. Fox?” in a paved area just near the side exit of the building. When I approached, I could see that G was Mr. Fox. The pure delight that was evident on his face, no… evident throughout his whole body! Grin extending ear to ear, feet bouncing inches off the ground, belly laugh chortling out of his body. I love it. I love watching him. It’s impossible to watch without breaking into a grin myself. “What time is it, Mr. Fox?” the children say in unison, their eyes glued on G. “It’s 2 o’clock!” G (aka Mr. Fox) responds, his body taught with excitement. His friends take two steps towards him. The excitement builds. “What time is it, Mr. Fox?” they ask again, quivering with expectation. “It’s 3 o’clock!” Three more steps. “What time is it Mr. Fox?” One friend is so close, G can almost reach out and touch her. He is bouncing inches, maybe a foot off the ground. He gathers himself together, so excited he can barely get the words out. “IT’S MIDNIGHT!!!!!!!” Happy shrieks erupt, as chaos ensues. Everyone is running, smiling, giggling. And there is G, right in the middle of it all. I can feel myself bursting with happiness.

Of Course, I Remember

The other day, I walked past G’s teacher from his first year. She smiles at me. “How is G?” she asks. “I was just thinking of him the other day. I remember when he was this big, and he would come in off the bus with his enormous Mickey Mouse backpack. Do you remember?”

Yes, yes. Of course I remember. I remember loading him onto the bus. Strapping him in and giving him a kiss. Tucking the Mickey Mouse backpack safely on the floor under his tiny feet. Be safe, I’d think, as the bus pulled out of the driveway. Be safe. The bus eases out of the driveway. It’s taking all I’ve got not to throw myself across the hood, forcing the driver to stop. Ripping G out of the seat, and keeping him home with me.

But, I remember the smiling faces that are waiting for him at school. They will care for him. They will guide him. They will put their hand over his, lead him to the group at the game table, and coach him to say, “Can I play too?” And, just as importantly, they will coach the other kids to say, “Yes! It’s your turn next!”

It’s hard letting go. Knowing that G is in a safe, loving place… a place where caring teachers will help him to find his way, find his voice… that helps.

Listening to the Joy

You came to me for advice. Your child has just received a diagnosis. And now your child and mine, they are travelling the same path. You smile up at me through your tears, and my heart is breaking. Breaking for the pain I know you are feeling. Breaking for the strength you are trying valiantly to muster, as you attempt to wipe away the tears before your child looks up from her game. You don’t want to answer the question, “Why are you crying, Mommy?” and neither do I.

Then you ask me the question that makes me feel both proud and guilty at the same time. “How do you do it?” you ask. “I’ve always admired the joy that you bring to your parenting. I feel like when I’m with my daughter, the tape is always playing in my head. The worry. The fears. The what-ifs. But when I look at you, you always seem to be in the moment.”

Wow. I didn’t see that coming. I remember so clearly being in your shoes… those first scary days and weeks… that I don’t remember that they aren’t my shoes anymore. How do I answer your question? How do I bolster your confidence without downplaying your very real worries? How do I empathize without making you feel more hopeless than you already do?

I wish I could remember what I actually said. Probably nothing too impressive. Here’s what I wish I had said. It’s taken years… months and days and hours… of struggle to get the tape playing in my brain under control. There is constant worry. Guilt about the past, anxiety about the present, and apprehension about the future. All of these things play in a loop in my head. However, at a certain point, it was pointed out to me that, while those feelings are still present, there are other feelings there as well. Joy, pride, adoration, love. I can choose to turn down the volume of the negative feelings, and turn up the volume of the others.

The anxiety, apprehension and worry serve a function. I push myself to get the next therapy my son needs. Find a different doctor, one who “gets it”. Persist in a conversation with my son’s teacher if there is something he needs that he is not getting. The worry is the motivator behind each of these actions.

After a year of physical therapy, my son took his first wobbly steps two months before his second birthday. The anxious voices clamored. “Why so late?” the voices demanded. “Will he ever run? Jump? Climb downstairs? Does he need longer therapy sessions? More intense?”

And then, I forced myself to take a breath. Turn down the volume on the worry. Turn up the volume on the other emotions. “Look at that, my boy is walking! Come here! You can do it! Walk to mommy! I’m so PROUD of you!!!!!!” The steps were small. They came so late. But, he was doing it… and I was proud, and joyful, and adoring, and so in love with my boy.

And for you my friend… I know you will get there. Your child has autism. Her life is going to be different from what you expected. She is going to need every once of fierce mommy protection that you can muster. But soon, you will have sat with these new emotions, these mountains of scary worries and seemingly insurmountable fears. Soon, you will be able to tell them, “Okay. I’ve heard you. I know you are here.” Then, you’ll be able to turn down the volume on the worry, and turn up the volume on the love, pride and joy again. I know you. You’ll do it, and you will be amazing.

Wandering

I had a bad dream last night. We were at an amusement park, and somehow S talked me into taking her and G on a roller coaster. We waited in line together… but when we got to the front, the loading happened so quickly. When the roller coaster train began chugging up the track, the three of us were seated in three separate cars. First, G, then S, then me. My heart began pounding, and my stomach dropped to my toes. Not because of the increasing speed of the ride, but because I was picturing what would happen when we got to the end. What would happen to G when the metal bar lifted, and the laughing, smiling passengers disembarked from their carriages? He would be swallowed up by the crowd. How would I reach him? Oblivious to the air rushing past as the roller coaster hurtled up and down steel mountains, I pulled out my phone and began frantically texting D. Meet us at the exit! MEET US AT THE EXIT!!! The train pulled into the station, and there was D. Smiling at us. Waving excitedly. He could see S beaming with excitement. It wasn’t until our eyes met that he realized G wasn’t with us. In slow motion, I saw the metal bar on G’s car go up. On shaky legs, G got out of the train and started walking. Following the crowd, out into the swarms of people, drifting out of the fenced area, wandering towards the street. Like a crazy lady, I pushed through the crowd. Pardon me. Sorry. EXCUSE ME!!! Just as his foot left the sidewalk, and hit the unforgiving pavement of the busy street, I caught the hood of his blue jacket. Then I woke up.

There has been too much in the news lately about autistic children wandering off. My conscious mind knows that this is not something G does. I hope my unconscious mind will get the memo.

http://sanfrancisco.cbslocal.com/2013/05/15/missing-autistic-girl-from-san-francisco-found-dead-in-lake-county/

Moving On

I had the best volunteer experience of my life today. Today was the staff appreciation lunch at Gabe’s preschool. Gabe goes to the integrated preschool in our town (integrated meaning half the students are “typically developing” children, and the other half are kids with special needs). I helped organize the lunch, and, as chair of the PTO I got to give a little speech. I brought in a visual aid– a Thomas the Tank Engine T-shirt from when Gabe first started at NECP at age 3. It was a shirt that Gabe wore every day for three weeks. (One characteristic of people with autism is that they are very, very rigid. Once they start a pattern—like wearing a specific shirt to school—it is very hard to break). When we tried to get Gabe to wear a different shirt, he would have an enormous tantrum. At that time, we did not have the skills to get him to wear something different. The reason I brought in the shirt, was to acknowledge the staff for all that they had done for giving Gabe the skills he needs to go out in the world (in this case, the ability to be flexible). And also, to acknowledge the difficult task that the staff take on when working with parents. Every day, these teachers bring difficult news to parents, and also support parents in the painstaking process of learning the skills that will help their kids grow. I concluded by remembering the Gabe who came to NECP two and half years ago. The Gabe who was small enough to fit in the Thomas shirt. The Gabe who never made eye contact. The Gabe who barely spoke. The Gabe who would have a huge tantrum at the smallest change in routine. I think of the path that that Gabe (and his parents) was on. What a huge contrast to the Gabe who is leaving NECP to go to kindergarten in the fall. All teachers at every level make a huge difference in the lives of their students. But the teachers at this school have put our entire family on a completely different path.

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