Chandler and Grandma June

This is not my mom. This is also not my grandmother. She is my mom's roommate at the nursing home.  A sweet lady named June, who likes her birdwatching, and accompanying my mother to bingo. June cannot hear very well in her old age, but she loves to talk. She doesn't quite understand that Chandler has any issues, or autism for that matter. But she understands that he loves to sit on her bed and watch the birds. I try to move him, and remind him that it is June's bed, and he can't just go wherever he pleases. She always tells me to leave him alone. Today was the first big flake, beautiful snow fall. June was already watching the snow drift down when we arrived, and Chandler climbed up to his "spot". She talked and talked to him about the snow, and told him to keep watching for the birds. They have this special bond, and she doesn't know it, but she makes me cry. Tears of happiness, that she sees what I wish others would see, and that is a little boy who loves the birds and snow, nothing else. He puts his hand on her arm every time we leave, and that simple interaction is enough.

Sunday morning

If I could see a Sunday morning snapshot of all summers past, I can already tell you this summer is by far my favorite. And it just started. After a long, almost unbearably snowy winter, we've had a few warm and rainy days. If you have read anything about Chandler you know what a fan he is of rain. Yesterday he spent 5 hours outside with his umbrella. Doing nothing but enjoying the rain sounds hit the umbrella top, the feel of the wet cement under his feet, and watching for his new beloved favorite. The bird.
     Chandler is somewhat verbal, and most of the things he talks about are "requests". Pop tart, milk, toast, outside, swimming. But this week it has been all about "Bird" and oddly, he has been closer than ever to his therapy dog, Gwen, or "puppy" as he calls her. He has been taking it upon himself to feed her. Even though this is a chore he has helped out with for a couple years. He used to need a lot of prompting because of the dog food smell (blame it on autism senses, because I can't smell it), and the annoyance of a chore being asked of him in general. But the other day I was doing some work on the computer and the house was quiet with no one around except Chandler and I, and I heard the familiar sound of a cup of Eukanuba Adult Large breed being dropped into a metal pan...Sure enough, he was jumping around in delight as "puppy" happily scarfed down her second breakfast. Two things. Therapy dogs eat twice a day only. They also require the command "okay" before they will touch the food. Fast forward, three days later, I hear the sound AGAIN just as I am coming out of the bedroom in time to hear Chandler give the "okay" command. This is just too funny for me to get mad about, and I have to be proactive and hide the food cup. But the amount of progress in this seemingly small task is enormous.
     So this Sunday morning the boys are downstairs annoying each other over the Wii, John is working on his golf game, and I am eating peanut butter toast on the deck and admiring my son. Chandler asks Gwen to "come on" as he goes down the stairs, and I'm in tears. Another first. He is listening to the birds chirping from every direction on this cloudy, calm morning, and points that out to me over and over and over, and I can't get enough. He is becoming more verbal every week. We have worked very hard this year, and after a very frustrating school year we have overcome many obstacles, made some big changes, and this year we will be unstoppable.

Autism "action" month.

Autism awareness month. Of course. I do all the ribbon-y things. I have blue hair extensions, I ordered a license plate cover, and bracelets for my sons class and I am attending every single event I can, and telling my story to everyone who will listen. But it’s not enough. So people will see autism, and hear the word. But they can’t possibly know what that feels like for me.

I speak for me, and I speak for my other families. I work in a non profit field. I am not full time. We are funded by grants. I take these stories home at night. I answer my phone at any hour, and any day. I cry for them and with them.  I celebrate their success and every milestone their child achieves. It’s like it’s happening to me again. I look to other moms who have been here before me to light my path.  I know my son has what is considered “severe autism”. I would love to tell my legislators, the people at the state level that make decisions that directly affect my family and our quality of life how beautiful he is. How he makes me smile when he stops his constant stream of motion for a few seconds and lets me into his world and touches my face and maybe says “mom” or “two arms” (that means a real hug). That moment from any motion picture when time stops and all I see is his eyes are this deep blue. And you forget about all the screaming, flooded rooms, the two hours of sleep, the painting the sink with nailpolish, the healed fractures in my ribs, the heart healing that happens every summer when the wound is ripped open again while I watch him grow up. Seeing each year the differences between my son and his peers is more apparent and they say hi and walk away at the park to play football. I have to hold back tears and wonder if his heart is breaking too.

That is the story I have to tell people. I want to tell the world how beautiful he is, but I have to tell them the horror stories just to get what I need for him and it’s wrong. Why do I have to relive the ugliness, the pain, and the hurt and every battle scar I have bared to the “gatekeepers” of services? How can I give him the best quality of life I can without help? I can’t.  We have a tendency shout from the mountain tops so people can see our children are CHILDREN and we want the inclusion, we want the support. But walking that fine line is so damn hard. I am so inspired by the Carly Fleischmans, the Jason McElways, the Alex Winemans, but that is not my autism. 

I cried my eyes out in my car when I heard the CDC released the numbers. I in 68. I in 42 boys. Yes, I give a shit about why and prevention and that this is a national epidemic. But is that going to help the other families already here? We are going to be facing a nation of our children becoming adults. Where will they live and work? There are not “just a few” children with autism becoming adults with autism. We aren’t ready. I never go to sleep at night without wondering what happens if something happens to me? What parent wants to live with the thought that I have to outlive my child? We can’t become beggars taking what we are given and hungering because it isn’t enough. We have to make this right for our kids. Don’t stop talking, don’t stop advocating. Take every opportunity you can to tell your story. And STOP fighting with each other. We are united in this. I don’t even have to know you, and I will fight for you.

I am in the comfortable stage of autism. I am somewhere between finding my way and watching new horizons unfold in front of me as they always will. I have some time before I have to face transition out of the school system, and I have to balance keeping that in the back of my mind and not allowing the black hole of worry to swallow me up. Some of the fear and stress has subsided over the years, making room for some advocacy and leadership. I will never be able to step down or walk away from this role. It should NEVER consume you as a parent. You should still have the beautiful moments.  But at those moments when you feel you can’t be a leader or fighter because you are too exhausted, remember the power in numbers, the power of one heartfelt story.  If you hit a brick wall and hear “there is nothing we can do”, climb it. Don’t accept that.

Do one thing this April month..this autism awareness month… as a call to action. Get involved. And to those of you without children with autism. You can do this on behalf of your friends, your family. Don’t just put the blue light up, and say I support autism. Autism awareness is wonderful and it’s needed, but once the face of autism is out there, the question is…what are we going to do about it?

Teaching moments...

I have other kids. Besides my child with autism. That is a big, meaningful statement all by itself. You have to carve out time without getting tired (I say that in jest), and teach them patience while modeling it yourself. Life is full of opportune times to get your cape out and show your community how pro active you are, and there are more often times, moments when you freeze. When you get nervous, angry, or frustrated.
     I hate feeling annoyed when my other kids have activities. I want to be "that mom", the one who is den leader at scouts, the one who bakes homemade everything, the mom who sews her own halloween costumes. But I'm not. I am barely awake for storytime.
     My six year old had a pancake breakfast for cub scouts last weekend. I bundled up him, his little brother, and Chandler. We drove early to the church, and the first thing Chandler did when he saw the table set up with the GIRL scout cookies was squeal in delight. And the first thing I heard was a "shush". Oh okay. He's too loud when there is a church service going on in the other room. I get it. And it hurts. He cannot help it. I say nothing. Today it isn't worth the fight. I don't know these parents. So I help Elliott flip sausages, and I watch all the parents in the kitchen watching me. We sit at the table farthest away. There is another couple near me with a boy Sawyers age. They trade iphones and play Candy crush and angry birds. They are smiling at Chandler eating thin mints. I begin to think about this being an opportunity. I relax as I see there are one or two people interested, asking questions, and I can tell Chandler has once again won hearts just by being sweet and signing "cookies".
    The boys start to race derby cars for practice, and Chandler gets very excited. He jumps and flaps as the cars race down the track. The boys in Elliotts scout den are looking at him, and I realize. This is good. FOR them! This is the way I am working on social inclusion. By showing them I am having fun with Chandler, and I notice his brothers are not bothered by his "loudness", in fact, Sawyer is talking to him about cookies, and his new friend is noticing. I don't have to do anything but be present. And allow Chandler to be Chandler. Sometimes being the best teacher is allowing things to happen.

What isn't missing

It's a running joke in our family that we have only boys. I have four amazing sons, and six nephews (soon to be seven). I have been shopping with my sister as we slowly pass the baby girl section with longing and wistful looks at the christmas dresses with tulle and ribbons, and we have to skip the aisles of rows and rows of barbies with golden, brushable hair smiling from their shiny boxes. We say "Oh we would have LOVED this as a kid..." Currently, I know all about Bey Blades, and species of dinosaurs, and Skylanders Swap Force.
     One day a couple years ago, Elliott (now almost 7) had his first play date. It was this sweet little girl named Ava from his preschool class. I was more excited than he was as I pulled out a rubbermaid tub of my little ponies, and my precious shoe box of sea wees. See here if you are not a child of the 80s.

This adorable, pig tailed girl showed up, and I left them with peanut butter sandwiches at the counter while I went to dig out more vintage treasures. I came back out to Elliott and Ava "eating" my sea wees with Elliott's dinosaur collection. My face fell, and I went back to reminiscing over my sticker books...
Everyone says "Girls are drama, you're lucky", at least you didn't have to buy all new things, etc. etc. It doesn't help. I LOVE being a "boy mom", it makes you tough (like when you step on legos), you get to be a cheerleader at sports, my teenager plays guitar and plays chess like a boss, and except for the roughhousing and fights, they are mostly sweet, especially when my little Sawyer who is 5 still comes up and says "Mommy, you are so beautiful". And I know they will be fierce protectors of Chandler. I already miss the days when Luke used to catch frogs in the field behind my mom and dads house fourteen years ago. I see my 2 year old nephew Jake drive a "bus" (monster truck) across the floor, spitting as he makes truck noises and it reminds me that I won't see that anymore. My babies are boys now. (Elliott was climbing the rock wall at the Y for Cub Scouts today!) But every once in a while I get little glimpses of what I missed by having only boys. Today I took my boyfriends daughter dress shopping for a formal. She is in a fashion show at school for children with special needs and their mainstream peers. What a cool concept. Kids that might not get the chance at a "grand march" and parents that feel that pain of looking at prom season in the stores knowing that their child won't be going. It hurts. It's the cycle of grief that never stops. Reminders of our children's differences. The kids that take part in this, that want to increase social inclusion are amazing. I am glad to see the future leaders and the inspiring teens that do this.
     Walking into the dress store, she piled her arms full of dresses. Lace, sequins, ruffles, beads, flowers....I played with my phone, and sat on the floor drinking coffee. I began to look around. Thinking back to school days, and prom. Dress fittings for my sisters wedding. I watched mom and daughter pairs come in the door, one after another. The girls came in and out of the curtained rooms draped in layers of soft, shiny fabric. I suddenly wanted to play dress up. One after the next was tried on, and Sam and I laughed about some "NOT even an option, Nicole, I hate these ruffles", contemplated some, admired some, and finally decided on this beautiful black and sparkly one with a corset back. Stunning. She looked so pretty and we agreed this was "THE dress". I was blinking back tears thinking about what I get to do now. I may have missed out on my own daughter, but this is a close second. Sometimes we are too focused on what we don't have. What is missing. There are daily reminders in my life that nothing is missing. Things are as they should be.

Making sense

There was this young woman driving erradically. She cut a few people off. Sunglasses on, iphone in her hand, she was reaching behind her repeatedly. Her kids were bouncing up and down in the car, misbehaving. Her car was filthy and she was drinking Starbucks. She slammed on her brakes at the stoplight almost missing the red light, and the old woman next to her shook her head in disgust. The young woman lowered her sunglasses and the old woman could she had been crying. Her eyes were puffy, tears were making mascara run streaming rivers down her cheeks. The old woman stopped shaking her head. This young woman, she hadn't time to think about washing her car this week. The coffee was dinner. Her son with autism was the one constantly bouncing and he was whining hearing his mom cry. She was repeatedly reaching for his hand. On the phone was her sister and they were discussing their mothers options. Her mother doesn't have much time left. The past few months have been a constant strain on her siblings. She wants to fix it. There isn't any fixing it. That young woman was me. Just a couple days ago.

Some things I just can't make sense of. As human beings we have this need to control the things that are happening around us. When we can't it is frustrating, and hard to understand. I don't have any tears left. I can't make a lot of sense of anything right now. I watched something amazing yesterday. I took the boys to see my mom in the hospital. Chandler is terrified of all that is medical. Lab coats, scrubs, medical equipment..sends him into a panic. We pulled into the parking lot of the hospital.  He used to go to speech at this hospital on the bottom floor, when we got there I told him he could stay in the car with Sam. He began to cry this sad, tearful cry I don't often see, so I told him "Chandler, you can come. But it isn't speech. We are here to see grandma, and she is sick." He took my hand. On the the third floor, he began to whine, and as we got closer to her room it began a full out anxious cry. I didn't have the energy to fight, and I wasn't annoyed. I simply said "If you want to stay in the hall, you can. Mom is going in. Grandma is in this room. You can stay here by the wall. It's okay." And he froze. Then he did something incredible. He clenched his fists, and he put his head down. He did a very deliberate run/walk into her room. A quick scan told him she was indeed in here, and he plopped down in the chair. She smiled at said "Chandler! I'm so proud of you!" And so was I. Proud of him. Proud of her for seeing the things in him that I do. Wondering what he understands.

I went back alone to the hospital today. I talked with the doctor and found out I do have more tears. I sat with her for a long time. She can't say much because of the pneumonia. In a few days when she is back at the nursing home I will be able to understand her better. She wants to go home. Even for the day so she can see her house, her things, her bird feeders that sit outside the window and attract hundreds of birds even in winter. She asked me today if my brother Justin could put a bird feeder outside her window at the nursing home. I told her I would ask. It made me think she probably wouldn't see another summer. Do not wait for the things you want to do. Don't wait another second for the things you want to tell people. Don't say "I'll go tomorrow. I'll call next week." Do it now. And don't judge other people based on what you think you see. Be good people, pay it forward. A few months ago I was annoyed when I saw my mom was calling me again for the fourth time in one day. God what I would give to have more time. Make every day count.