Friday, July 29, 2011
Bouncy house
I LOVE carnivals. There is something about riding thousands of pound of steel while moving 75 miles an hour toward concrete (see steel venom, valleyfair) that gets my blood going. I love the way I feel when I'm a hundred feet above the ground without shoes on, looking out over the landscape and that sharp breath I draw on the first drop. They could scream tract me for horror flicks. I am an involuntary screamer. My lungs hate me, as does my throat. Family amusement parks are never the fun filled promise they show on t.v There is no laughing couple holding hands while their angelic cherubs skip along to the next ride carrying balloons. Eye roll. Its more like "MOMCANWEGOONTHATRIDEONEMORETIMEGIVEMESOMEMONEYIWANTSODAIWANTTOPLAYGAMES THATCOSTFIFTYDOLLARSDADDYWINMETHATGIANTBANANAIWANTHOTDOGSANDCHEESECURDSANDFUNNELCAKESIMTIRED!!" And so it goes. But Chandler doesn't want anything. He avoids the rides with tears in his eyes. He looks at me, then the parking lot longingly and says "Car". Poor baby. He takes my hand, and I lead him around to a few acceptable easy going rides. I finally spy a bouncy house. Oh thank God. There is nothing he likes more than the freedom to jump into the air and land softly over and over. I send Luke over with Chandler in tow, grinning and bouncing toward the giant snoopy inflatable. Three minutes later I hear wailing, and I see them coming back toward me. "She said he's too tall, mom. He barely missed it. Without his shoes he would have.." Already, I am shooting daggers at the snoopy girl with my eyes. "What did you tell her?" I ask. "I told her he has autism and he can't talk, and he just wants to jump. She said we need a form. I just rolled my eyes at her and walked away." Chandler's face was streaming with tears. "Jump, jump" he repeated. I sat down on the bench with a heaving sigh, and stared at the large food menu sign to my right. I order fries, cheese curds, hot dog, milk, and a coke. He wants nothing to do with the food, shoving it forcefully away while his little brother is scarfing down handfuls of french fries. "I wike ketchup!" Sawyer says jovially. Chandler's wistful face is turned toward the giant snoopy. By now there has been an attendant swap, and there is a college age boy running the ride with a mopful of curls and a dimple in each cheek. I take Chandler by the hand,and lead him up the ramp. (God, please let this work or he will have a total meltdown). I am already slipping his sandals off. The ride stick comes out and the boy turns his head thoughtfully to the side. "Look", I say, "I paid full adult price for him to come in here. He hates everything we have ridden on. He has autism and cannot speak, and there is only two kids in there. Please....." My voice begins to crack. College boy moves the stick away, and lets Chandler into the snoopy spaceship. I kneel down to see him through the mesh screen. He is wiping his tears and grinning, and giggling. I don't even feel the cement digging into my bare skin. My tears are falling so much the snoopy house gets blurry. The boy is watching me curiously. The bouncy house timer has now gone past three minutes and he hasn't moved. There is no one else in line. I give him a thankful smile. I might be the only mom crying at Valleyfair from happiness and gratitude. And I would pay full price for him to spend a few precious minutes doing what he loves most.
Wednesday, July 6, 2011
The Zen Sprinkler
I have some advice. I'm sure you have heard this before. Slow down. No matter how busy you are, no matter how many things you are doing (appointments, blogging, therapy, dinner...) just stop for a second to watch your child. I have watched Chandler playing in the sprinkler countless times. He's making happy noises, wandering around it, and stopping to stand in it. I was picking up toys in the yard today (remember my advice?) and out of the corner of my eye I see him staring into the water. My brain races...(absent seizures are so common in autism)...wait...I crouch down to where he is and stare too. My eyes take in what I'm looking at. AHHHH. I see it! I know why you DO this! The water from this height looks like snow, or tiny glass beads falling in a spectacular rain shower. He smiles a tiny smile and puts his head down. When he moves I take his place and put my head down too. When you face down in a small, twirly sprinkler it looks like it's a huge fan that is going to swallow your head, or that you are going down a tunnel. It's very cool. He giggles and bounces around the water again. I see it baby. I see your corner of the world again, for a second. My husband sees me from the lawn chair he has plopped himself in after mowing the lawn. I feel like I should explain to him why I am crouching in the lawn, soaking wet. Wiping sweat from his brow, he says, "You've found your inner autism again." My wry smile lets him know I know that he is teasing me. But yes, I have actually, and these are moments I treasure.
Monday, July 4, 2011
Happy Fourth of July
I wanted to title this Happy fricking fourth, but I didn't want you to take it the wrong way. I love this country, even though some days it appears it is falling apart before our eyes. I am proud of my cousin Troy who just a few short years ago, gave his life for our freedom. I feel for his parents and siblings every time I see an American flag, or any symbol of our right to live the way that we live. This holiday is bittersweet for so many. I know in my heart this country was built on principles many of us still have, but that others take for granted. Just look around at all the relaxing that is going on today. I thank God every day that I have the ability to take care of my son. That my husband has a job that pays well and my children have insurance. But freedom certainly isn't free.
I love that today I have nothing to do, and the lakes area is full of BBQs, fireworks, and family get togethers. I am also glad I am not there. I think some parents that do not have a child with special needs may not get the concept of freedom as I see it. Freedom to do things they want with their children, freedom of the joyful holidays and trips without them for the weekend. Freedom to pack up some sandwiches and go to the fireworks display. My fireworks display may or may not happen tonight, but we must watch from the car. My trips to the store are ONLY to a select few. And my trips to the family for holidays? Let me tell you about yesterday.....
My father just put in a new pool in his yard. Nine grandsons, most of them 8 and younger, and he puts in a POOL. When he told me about it, my heart just sank. One more place we can't go. Now, my family is quite close and we plan family get togethers on most holidays. I tried to stay home, and I got to hear everyone say "It will be fine. We will help! He will be good...." My grandparents were finally employed to sway my insisting that we would be better off at home. So, against all better judgement, I went. I put him in his swimming trunks before we left since I know better. I no sooner unbuckle his car seat and his shoes were off, and his feet were dangling in the water. I wrestled him into a life jacket, and he jumped in giggling and making that happy face when his eyes are just sparkling and the pure joy shines through. Ah, water. The love of his life, and the bane of my existence. I'm terrified of it, hate it. Not afraid for me, as I am a good swimmer, but afraid for my son because he cannot stay away. He floats back and forth, kicking and paddling and grinning, as I sit on the deck listening to every say "Look how happy he is!". (inward groan, and eye roll) He swims for an hour and a half and I make him break for lunch. A handful of chips and some milk and he is breaking for the patio. I bring my tray down to the deck, and eat while he swims. I reapply the sunscreen 4 times, but he still has tomato red shoulders. We break again for ice cream. He watches my sister and I in the kitchen. I see him thinking as his neck cranes to look toward the basement, so I change him into underwear and a T-shirt, and put on his favorite movie in my parents' bedroom. After five minutes, I hear the door creak. I pretend not to notice, and he sneaks down the steps to the basement. From around the corner I watch him turn around three times to see if anyone is coming. He silently slides open the patio door just enough to squeeze his skinny frame through the space, and closes it softly behind him. Sitting on the deck, feet dangling again, he turns one last time to check for adults, and slides into the pool, clothes and all. His smile turns to a frown when he hears my voice yelling "Chandler! NO! YOU DON'T GET IN THE POOL WITHOUT MOM..BLAH BLAH..." I take him out, and its his voice for the next five minutes, "wah-er, wah-er, pool, mo, mo, please"...This is a futile fight that I WILL NOT win. I let him swim while I pack up our things and my family watches him swim in delight.
Today: I am feeling un-festive. I bought midol, and chocolate at the store if that clarifies the situation at all, and Chandler has stolen my fuzzy blanket I love on these days. Chandlers little shoulders are the hue of a lobster, and he cringes when he sees me coming every hour with the soothing gel. He is furious we cannot go outside. The situation seems simple to most, Put a T-shirt on him right? It will come off and the sprinkler on. He isn't wearing a shirt now, and he keeps putting his shoes on hoping I will give in, but the sun is glaring down. We are close to meltdown.....WE.....
I love that today I have nothing to do, and the lakes area is full of BBQs, fireworks, and family get togethers. I am also glad I am not there. I think some parents that do not have a child with special needs may not get the concept of freedom as I see it. Freedom to do things they want with their children, freedom of the joyful holidays and trips without them for the weekend. Freedom to pack up some sandwiches and go to the fireworks display. My fireworks display may or may not happen tonight, but we must watch from the car. My trips to the store are ONLY to a select few. And my trips to the family for holidays? Let me tell you about yesterday.....
My father just put in a new pool in his yard. Nine grandsons, most of them 8 and younger, and he puts in a POOL. When he told me about it, my heart just sank. One more place we can't go. Now, my family is quite close and we plan family get togethers on most holidays. I tried to stay home, and I got to hear everyone say "It will be fine. We will help! He will be good...." My grandparents were finally employed to sway my insisting that we would be better off at home. So, against all better judgement, I went. I put him in his swimming trunks before we left since I know better. I no sooner unbuckle his car seat and his shoes were off, and his feet were dangling in the water. I wrestled him into a life jacket, and he jumped in giggling and making that happy face when his eyes are just sparkling and the pure joy shines through. Ah, water. The love of his life, and the bane of my existence. I'm terrified of it, hate it. Not afraid for me, as I am a good swimmer, but afraid for my son because he cannot stay away. He floats back and forth, kicking and paddling and grinning, as I sit on the deck listening to every say "Look how happy he is!". (inward groan, and eye roll) He swims for an hour and a half and I make him break for lunch. A handful of chips and some milk and he is breaking for the patio. I bring my tray down to the deck, and eat while he swims. I reapply the sunscreen 4 times, but he still has tomato red shoulders. We break again for ice cream. He watches my sister and I in the kitchen. I see him thinking as his neck cranes to look toward the basement, so I change him into underwear and a T-shirt, and put on his favorite movie in my parents' bedroom. After five minutes, I hear the door creak. I pretend not to notice, and he sneaks down the steps to the basement. From around the corner I watch him turn around three times to see if anyone is coming. He silently slides open the patio door just enough to squeeze his skinny frame through the space, and closes it softly behind him. Sitting on the deck, feet dangling again, he turns one last time to check for adults, and slides into the pool, clothes and all. His smile turns to a frown when he hears my voice yelling "Chandler! NO! YOU DON'T GET IN THE POOL WITHOUT MOM..BLAH BLAH..." I take him out, and its his voice for the next five minutes, "wah-er, wah-er, pool, mo, mo, please"...This is a futile fight that I WILL NOT win. I let him swim while I pack up our things and my family watches him swim in delight.
Today: I am feeling un-festive. I bought midol, and chocolate at the store if that clarifies the situation at all, and Chandler has stolen my fuzzy blanket I love on these days. Chandlers little shoulders are the hue of a lobster, and he cringes when he sees me coming every hour with the soothing gel. He is furious we cannot go outside. The situation seems simple to most, Put a T-shirt on him right? It will come off and the sprinkler on. He isn't wearing a shirt now, and he keeps putting his shoes on hoping I will give in, but the sun is glaring down. We are close to meltdown.....WE.....
Wednesday, June 22, 2011
Camp Rodgers
Friday morning I was a wreck. Wet hair, in a towel, I tripped down the stairs on my way on a mad hunt for my pink sweatpants. I debated the night before on sleep or staying up to finish packing. Obviously I chose sleep. 7:50...UGH, I told Kate I would be there at 8:30 to pick up her and Emily. Chandler sat by the door watching me run up and down the stairs...9:15 I pulled into her drive. Fifteen minutes later we had Em and Chandler in the back of the suburban with snack bags, DVD players, and pillows, onto Caribou drive through and then the highway....
We amateurishly navigated our way, checking the GPS, marveling in the fact that neither child was making a sound, laughed at the tiny towns we saw on the way, one in particular called Bock was two trailers and a bar, and Emily repeated Bock bock bock, like a chicken for awhile down the road. I watched them playing at the rest area on the slide...I put my head down in my hand, and closed my eyes to stop the racing thoughts..."What if he doesn't sleep? What if he hates the food? What if he, god forbid, gets out of the cabin...THE LAKE!"...breathe..."What if everyone knows each other and we are outsiders..what if...." Eyes open. It's going to be okay....
When we pulled up to the Camp Miller sign, my heart was racing..but I could see it was beautiful already. The towering trees, the rustic lodge, the playground with a giant hammock...."There it is Emily!" calls Kate in the direction of the back of the car. Emily and Chandler return our excitement with blank stares. Moms are wierd. A staff member greeted us right away to show us our rooms, help us with our pile of stuff, get us schedules...Wow, I could tell they were honestly interested in our comfort level. I looked around, half listening..."anything you need..."...."over there, there's the..."......"a number of activities..."......I was in a daze, could we do this? Silently praying, I lugged our bag full of movies and snacks toward the cabin.
Friday Night:
As they get settled, Em and Chandler are all over the place and we get a tour. Chandler finds a stim toy in the dining lodge that he claims weekend possession of, and immediately I sense his mood shift from uncertainty to joy. They are everywhere, checking out the games and the piano in the community cabin room, running down the hall, splashing through puddles down the grassy hill to the mini ponies and goats. Emily lights up, grinning at the horses and Chandler turns up his nose in indifference at the goat trying to eat his new toy. Emily gets to try out her photo skills when we come across an army worm on the way to the docks. Both of them bounce down the docks in delight, and dip their hands in to splash even on this chilly late afternoon. Giggles. After a spaghetti dinner (well, pop tarts for Chandler), and a fantastic introduction to camp, we sign up for pontoon rides. Under the sprinkling clouds, we float along the lake, and Chandler is bouncing up and down on the seat with happiness, and Emily is so excited that Kate and I take turns holding onto her life jacket so she doesn't go head over heels into the lake. After the ride, we split up for some alone time with our kiddos. I skip the teepee campfire for a walk in the rain under a giant blue umbrella with Chan. He is galloping and I try to keep up. We find several benches that are meant for church in front of a cross with the beautiful water as a backdrop. He snuggles up to me under the umbrella, and we sit on the bench for many minutes. He is at peace here, I can feel it. He smiles at me like he knows I understand.
On our walk back to the cabin, I see the playground has a green mini zipline suspended from two fat, old trees with an odd triangular bench sitting underneath. The lightbulb goes off. "Channy!" I call, and pull the zipline to the far side over the bench. He furrows his brow at me and climbs up, unsure what I'm trying to accomplish. I put my hands over his to grab onto the handles and I say "Jump!" He lets go and jumps to the ground, confused. I show him again and again, he is getting agitated. I persist. This time he hangs on, and I call "Pick your feet up!" And he does. Oh dear Lord, he gets it! He is jumping and smiling on his run back to the bench. We do this about 30 more times, and he is saying "Mo" (more) until my arms are aching from helping, and my cheeks from smiling.
Saturday: Rainy, cool camping is secretly my favorite. I love the way it smells outside, and the sound it makes when the water hits the canopy of leaves above me. I love that I am carrying around the coffee (they have on all day for the parents) in a real mug and wearing Kate's big blue abercrombie shirt that I'm sure she stole from her son Noah, and her Texas hat since I can't find the one I stuffed into my bag in the mad rush. The activities after breakfast start at 9, and we decide to take the kids canoeing. But first we attempt the climbing wall. Belted with helmets on, I admire their courage and this is another first. I hold my breath as Chandler makes his way up the wall, slowly and carefully. He looks amazed, and I am amazed. And crying underneath my sunglasses. Afterwards, we walk down to the docks, and get on our "boat coats" (Emily-speak) and John, the staff member helps us carrying the canoe to the shoreline. We ask him to take a picture of the four of us, Em has her paddle (just like Diego's), and Chandler is bouncing and leaning over to touch the water as I pray we don't tip over. The water has a calming effect on them, and we peer into the shallow water to see shining shells on the bottom. I fruitlessly try to reach them with my paddle, and we go around in a wide circle for almost an hour. They don't say much, except for Emily. Occasionally, I think she is talking about Diego, and Max and Ruby. No stimming motions from Chandler at all, and he scans the scenery over and over. We only stop because it is soon time for lunch, and then its onto horseback riding!
Because we need to take a bus down the road to the farm, we walk out in front of the lodge to wait. Emily has other ideas. Bus=school, and that is unacceptable. Kate has to pry her fingers from the bus door, and she is crying in anguish. Finally, she submits when mom convinces her its not school, and we are going to see the horses. At the farm, Chandler tolerates the helmet, because he is eager to hop up on "Cracker", the pretty, white horse on the end of the row. He is a natural, his body swaying in the saddle. I ask him several times, "More or all done?"...Mo..Mo...Mo...we go around and around. I see near the fence that Emily is sitting on a horse. Kate's back is to me, but I'm sure she is either grinning or crying. She didn't want the horse to move, but getting on was a enormous step for her. Way to go, babe!
After we get back, we have over an hour before dinner, so we decide to take the kids on the canoe again. I say, "Chan, do you wanna go on the boat?" He smiles, and repeats "Bo-s, Bo-s" Down on the dock, we get geared up, and when we step in, Chandler is crying. I adjust his sitting position, and talk to him, and we start to move out over the water. He is now crying harder. We make one circle, and he is inconsolable, so we head back toward shore. Emily is not impressed. With both of them wailing, my anxiety is going up. On shore, Chandler is dropping his body, and scream-crying. My mouth open in confusion, I beg him to tell me what he needs. Kate hugs him and attempts to help decipher this one. Finally he takes my hand, and pulls me all the way down the dock, and opens the gate, stepping onto the deck of the pontoon! Oh Chandler! BOAT! However, it isn't time for pontoon adventures, and I cannot drive one! One of the staff members sees me struggling, and comes to my rescue. "Would you guys like to go for a ride anyway?" (Does cookie monster eat cookies?!!!) Of course! So she takes us, Em and Kate, and Tanner (another fun kiddo from camp who came to visit us in our room to show the kids his very cool stuffed spongebob), and Tanner's new friend Fred (the green worm) for a long, relaxing ride, pointing out a beautiful, scenic farm as Chandler is bouncing away, and Emily's eyelids are dropping until she gives way to sleep. Chandler forgives me with a hug, as tears fall again.
Dinner was chaotic in a good way, everyone laughing and talking about the day. The camp director was trying to figure out the microphone, and the silent auction items were being closed. She introduced Breanna, the founder of the camp, who because of her commitment and passion for this camp and her love for her son made all of this happen, came up to the stage amongst great applause. She apologized to the families for not being a great public speaker, and she started to talk about a letter she had received that had touched her heart...oh god...I could feel the tears welling up....Kate, sitting across the table from me said "It gets better, turn around"...one of the staff was holding a birthday cake, the candle flames blurred...my hand covered my mouth as the parents and kids sang happy birthday...I see Chandler coming toward me with a cookie bouquet that was my gift from him. I couldn't even talk, I couldn't say thank you, the lump in my throat wouldn't let me choke out any words.
After dinner we walked by two camp staff who were waiting for people to come on a nature walk. Perfect. We went stomping along, singing Ants go Marching One by One, hurrah! hurrah! We took beautiful pictures of solitary Emily and solitary Chandler walking down endless roads lined with majestic trees. Kate posted Em's pic with the caption "Walking her own path". Never a truer, more lovely sentiment.
That night was smores (which was chocolate frosting subbed in for the real thing, and Chandler put his nose to it, frowning. "All done", and he pushed it toward my mouth. Then, the campfire, which was warm and inviting, and the staff had a surprise for everyone. The entertainment was prepared with skits and songs. Emily had ditched us, and hoisted herself onto the staff bench between two young staff girls and she was "chatting" with them. All the families and kids were just pure energy and joy, and were allowed/encouraged to share a song or a skit. Some did, and an older girl with autism came up, and sang a song quickly while closing her eyes. She did a beautiful job, and everyone cheered. What an amazingly inclusive part of the evening. Emily's eyes danced with joy as she realized this was a public forum. She stood with the staff during a skit, and even blew the staff members whistle. Everyone was clapping for her. And she was adored, and loving it. Chandler even danced along to the music in his way, and I never saw such perfect moves. Emily returned to mom, but was fascinated by a grandma who was talking softly to her, and Emily was accepting her gentle hugs on this cold night, and Kate was crying again. Chandler and I were the last to leave the fire. The staff trusted us to kick the logs down when we were ready to go in. He watched the flame forever, and said "Fi-ah". So peaceful. Flames were swimming, as again my eyes filled with tears. I sang to him a song I used to sing when I rocked him to sleep.
Back in our room, Chandler was restless. I knew he was worn out from the day, because he was verbally stimming and restless. I asked him a few times "What do you need?" and finally he put his hand on my head and pushed it toward the pillow..."I.....want...yoooouuuu.....mommama...." Breathe in...breathe out...more crying...You got it bud! I layed beside him until he fell asleep and Kate and I stayed up to eat cookies and watch Mean Girls. Cookies, laughter and tears, the best combination.
As we fell asleep, in the dark, my eyes getting heavy I heard Kate say softly, Thank you. I smiled, as silent tears fell. This was such a good idea.
Sunday: We are leaving today. It is so bittersweet. I miss my bed, and my other boys, but this time I had with Chandler......I connected with him, and strengthened our bond over campfires and nature walks. The morning was blur, and we went back for attempt two of horseback riding. Emily refused to get back on, but she was thrilled to stand on the fence and watch the horses parade by, carrying kids from camp. Activites went on until one, but we spent the rest of the morning packing, and playing at the on site park. As I sat on the swing, I watched Chandler, and thought about how much he has grown this past year, and how lucky we were to be here, living life to the fullest, and trying all the new experiences he wants to try.
Breanna, if you are reading this, please know how much you have done for our families. Rarely do we get to connect with our kids in an environment that is so inviting and calming. I would have never believed we could go to camp and have it be as successful as this weekend was. Everyone was like a family. Each and every child there like my own. Maybe every few months, I get to have a meaningful moment. A new word. A new experience. In three days, we had so many, I stopped counting. Words can never express what this weekend meant to me. I see my son in an ever brighter light, capable of anything. This weekend was not autism. Not therapy. There were no expectations, no limits. It allowed our children to grow, and enhanced the quality of our lives and relationships. I connected with my best mom friend on an even deeper level. This is a life bond. Our appreciation for what you accomplished by starting this camp runs deeper than you will ever know. Never has my son walked a birthday gift to me. I wouldn't trade this weekend for a million dollars. Thank you so much for giving us the best gift.
We amateurishly navigated our way, checking the GPS, marveling in the fact that neither child was making a sound, laughed at the tiny towns we saw on the way, one in particular called Bock was two trailers and a bar, and Emily repeated Bock bock bock, like a chicken for awhile down the road. I watched them playing at the rest area on the slide...I put my head down in my hand, and closed my eyes to stop the racing thoughts..."What if he doesn't sleep? What if he hates the food? What if he, god forbid, gets out of the cabin...THE LAKE!"...breathe..."What if everyone knows each other and we are outsiders..what if...." Eyes open. It's going to be okay....
When we pulled up to the Camp Miller sign, my heart was racing..but I could see it was beautiful already. The towering trees, the rustic lodge, the playground with a giant hammock...."There it is Emily!" calls Kate in the direction of the back of the car. Emily and Chandler return our excitement with blank stares. Moms are wierd. A staff member greeted us right away to show us our rooms, help us with our pile of stuff, get us schedules...Wow, I could tell they were honestly interested in our comfort level. I looked around, half listening..."anything you need..."...."over there, there's the..."......"a number of activities..."......I was in a daze, could we do this? Silently praying, I lugged our bag full of movies and snacks toward the cabin.
Friday Night:
As they get settled, Em and Chandler are all over the place and we get a tour. Chandler finds a stim toy in the dining lodge that he claims weekend possession of, and immediately I sense his mood shift from uncertainty to joy. They are everywhere, checking out the games and the piano in the community cabin room, running down the hall, splashing through puddles down the grassy hill to the mini ponies and goats. Emily lights up, grinning at the horses and Chandler turns up his nose in indifference at the goat trying to eat his new toy. Emily gets to try out her photo skills when we come across an army worm on the way to the docks. Both of them bounce down the docks in delight, and dip their hands in to splash even on this chilly late afternoon. Giggles. After a spaghetti dinner (well, pop tarts for Chandler), and a fantastic introduction to camp, we sign up for pontoon rides. Under the sprinkling clouds, we float along the lake, and Chandler is bouncing up and down on the seat with happiness, and Emily is so excited that Kate and I take turns holding onto her life jacket so she doesn't go head over heels into the lake. After the ride, we split up for some alone time with our kiddos. I skip the teepee campfire for a walk in the rain under a giant blue umbrella with Chan. He is galloping and I try to keep up. We find several benches that are meant for church in front of a cross with the beautiful water as a backdrop. He snuggles up to me under the umbrella, and we sit on the bench for many minutes. He is at peace here, I can feel it. He smiles at me like he knows I understand.
On our walk back to the cabin, I see the playground has a green mini zipline suspended from two fat, old trees with an odd triangular bench sitting underneath. The lightbulb goes off. "Channy!" I call, and pull the zipline to the far side over the bench. He furrows his brow at me and climbs up, unsure what I'm trying to accomplish. I put my hands over his to grab onto the handles and I say "Jump!" He lets go and jumps to the ground, confused. I show him again and again, he is getting agitated. I persist. This time he hangs on, and I call "Pick your feet up!" And he does. Oh dear Lord, he gets it! He is jumping and smiling on his run back to the bench. We do this about 30 more times, and he is saying "Mo" (more) until my arms are aching from helping, and my cheeks from smiling.
Saturday: Rainy, cool camping is secretly my favorite. I love the way it smells outside, and the sound it makes when the water hits the canopy of leaves above me. I love that I am carrying around the coffee (they have on all day for the parents) in a real mug and wearing Kate's big blue abercrombie shirt that I'm sure she stole from her son Noah, and her Texas hat since I can't find the one I stuffed into my bag in the mad rush. The activities after breakfast start at 9, and we decide to take the kids canoeing. But first we attempt the climbing wall. Belted with helmets on, I admire their courage and this is another first. I hold my breath as Chandler makes his way up the wall, slowly and carefully. He looks amazed, and I am amazed. And crying underneath my sunglasses. Afterwards, we walk down to the docks, and get on our "boat coats" (Emily-speak) and John, the staff member helps us carrying the canoe to the shoreline. We ask him to take a picture of the four of us, Em has her paddle (just like Diego's), and Chandler is bouncing and leaning over to touch the water as I pray we don't tip over. The water has a calming effect on them, and we peer into the shallow water to see shining shells on the bottom. I fruitlessly try to reach them with my paddle, and we go around in a wide circle for almost an hour. They don't say much, except for Emily. Occasionally, I think she is talking about Diego, and Max and Ruby. No stimming motions from Chandler at all, and he scans the scenery over and over. We only stop because it is soon time for lunch, and then its onto horseback riding!
Because we need to take a bus down the road to the farm, we walk out in front of the lodge to wait. Emily has other ideas. Bus=school, and that is unacceptable. Kate has to pry her fingers from the bus door, and she is crying in anguish. Finally, she submits when mom convinces her its not school, and we are going to see the horses. At the farm, Chandler tolerates the helmet, because he is eager to hop up on "Cracker", the pretty, white horse on the end of the row. He is a natural, his body swaying in the saddle. I ask him several times, "More or all done?"...Mo..Mo...Mo...we go around and around. I see near the fence that Emily is sitting on a horse. Kate's back is to me, but I'm sure she is either grinning or crying. She didn't want the horse to move, but getting on was a enormous step for her. Way to go, babe!
After we get back, we have over an hour before dinner, so we decide to take the kids on the canoe again. I say, "Chan, do you wanna go on the boat?" He smiles, and repeats "Bo-s, Bo-s" Down on the dock, we get geared up, and when we step in, Chandler is crying. I adjust his sitting position, and talk to him, and we start to move out over the water. He is now crying harder. We make one circle, and he is inconsolable, so we head back toward shore. Emily is not impressed. With both of them wailing, my anxiety is going up. On shore, Chandler is dropping his body, and scream-crying. My mouth open in confusion, I beg him to tell me what he needs. Kate hugs him and attempts to help decipher this one. Finally he takes my hand, and pulls me all the way down the dock, and opens the gate, stepping onto the deck of the pontoon! Oh Chandler! BOAT! However, it isn't time for pontoon adventures, and I cannot drive one! One of the staff members sees me struggling, and comes to my rescue. "Would you guys like to go for a ride anyway?" (Does cookie monster eat cookies?!!!) Of course! So she takes us, Em and Kate, and Tanner (another fun kiddo from camp who came to visit us in our room to show the kids his very cool stuffed spongebob), and Tanner's new friend Fred (the green worm) for a long, relaxing ride, pointing out a beautiful, scenic farm as Chandler is bouncing away, and Emily's eyelids are dropping until she gives way to sleep. Chandler forgives me with a hug, as tears fall again.
Dinner was chaotic in a good way, everyone laughing and talking about the day. The camp director was trying to figure out the microphone, and the silent auction items were being closed. She introduced Breanna, the founder of the camp, who because of her commitment and passion for this camp and her love for her son made all of this happen, came up to the stage amongst great applause. She apologized to the families for not being a great public speaker, and she started to talk about a letter she had received that had touched her heart...oh god...I could feel the tears welling up....Kate, sitting across the table from me said "It gets better, turn around"...one of the staff was holding a birthday cake, the candle flames blurred...my hand covered my mouth as the parents and kids sang happy birthday...I see Chandler coming toward me with a cookie bouquet that was my gift from him. I couldn't even talk, I couldn't say thank you, the lump in my throat wouldn't let me choke out any words.
After dinner we walked by two camp staff who were waiting for people to come on a nature walk. Perfect. We went stomping along, singing Ants go Marching One by One, hurrah! hurrah! We took beautiful pictures of solitary Emily and solitary Chandler walking down endless roads lined with majestic trees. Kate posted Em's pic with the caption "Walking her own path". Never a truer, more lovely sentiment.
That night was smores (which was chocolate frosting subbed in for the real thing, and Chandler put his nose to it, frowning. "All done", and he pushed it toward my mouth. Then, the campfire, which was warm and inviting, and the staff had a surprise for everyone. The entertainment was prepared with skits and songs. Emily had ditched us, and hoisted herself onto the staff bench between two young staff girls and she was "chatting" with them. All the families and kids were just pure energy and joy, and were allowed/encouraged to share a song or a skit. Some did, and an older girl with autism came up, and sang a song quickly while closing her eyes. She did a beautiful job, and everyone cheered. What an amazingly inclusive part of the evening. Emily's eyes danced with joy as she realized this was a public forum. She stood with the staff during a skit, and even blew the staff members whistle. Everyone was clapping for her. And she was adored, and loving it. Chandler even danced along to the music in his way, and I never saw such perfect moves. Emily returned to mom, but was fascinated by a grandma who was talking softly to her, and Emily was accepting her gentle hugs on this cold night, and Kate was crying again. Chandler and I were the last to leave the fire. The staff trusted us to kick the logs down when we were ready to go in. He watched the flame forever, and said "Fi-ah". So peaceful. Flames were swimming, as again my eyes filled with tears. I sang to him a song I used to sing when I rocked him to sleep.
Back in our room, Chandler was restless. I knew he was worn out from the day, because he was verbally stimming and restless. I asked him a few times "What do you need?" and finally he put his hand on my head and pushed it toward the pillow..."I.....want...yoooouuuu.....mommama...." Breathe in...breathe out...more crying...You got it bud! I layed beside him until he fell asleep and Kate and I stayed up to eat cookies and watch Mean Girls. Cookies, laughter and tears, the best combination.
As we fell asleep, in the dark, my eyes getting heavy I heard Kate say softly, Thank you. I smiled, as silent tears fell. This was such a good idea.
Sunday: We are leaving today. It is so bittersweet. I miss my bed, and my other boys, but this time I had with Chandler......I connected with him, and strengthened our bond over campfires and nature walks. The morning was blur, and we went back for attempt two of horseback riding. Emily refused to get back on, but she was thrilled to stand on the fence and watch the horses parade by, carrying kids from camp. Activites went on until one, but we spent the rest of the morning packing, and playing at the on site park. As I sat on the swing, I watched Chandler, and thought about how much he has grown this past year, and how lucky we were to be here, living life to the fullest, and trying all the new experiences he wants to try.
Tuesday, June 21, 2011
The R-word
Okay, before I post my blog about my life changing weekend at autism camp, I need to first work out this adrenaline I have. A "friend" of my hubby's posted the Spread the word to end the word site today. Under it was the following comment: LOL. Sorry but no. And saying retard is not like using a racial slur. Fuck people will complain about anything.
Now, if that wasn't annoying enough, One of our mutual friends "liked" the post, and the other one commented "I completely agree." My eyes swim with tears because Chandler is playing a few feet from me with his blue ball. The word is like a nasty taste in mouth. Retard. It's not like a racial slur huh? Okay, Why don't you walk up to the parent of a gay child and say "fag", or a black child and say "what's up nigga?" Does that feel a little off? Maybe you don't know any families with special needs. My son has autism. And these people when they have to look at my face will say, "Oh I didn't mean your son." Who did you mean then? Because my other friends have children with PDD/NOS, Aspergers, William's syndrome, Smith-Magenis, Downs...? Which one?
I'm tired of hearing people say that it is just a synonym for lame, stupid, or dumb. My child is none of those things either. I'm also sick of hearing that I'm being too sensitive. When you have to see children that are ostracized at school, that are taunted and called "retard", when it's your friends children, and people you care about, how would you feel? Many of my friends don't know a lot about autism. Chandler doesn't speak, so they think he doesn't understand. Many assumptions and myths, and stares. Sometimes I get very wrapped up in the education of strangers, but I am missing an important piece here. My friends that I don't see as often as my autism "family". You need to get how important this is to me. My child is smart, and funny, and totally handsome. He also has some things you don't. He picks up on vibes around people, he knows when people are nervous, sad, sick, and tense. He can hear things before you can. He knows what the weather will be. He has better balance than almost all children his age. He might even be smarter than you. When you think of a concept like red or mad. He feels all of it. None of the most powerful illegal drugs will get you to a bar of existence that he has. He interacts with his environment, and never judges anyone. Ever. Even when others stay away from him because they are afraid of what they don't know. When, as a parent, you hear assumptions, stereotypes, and watch as no birthday invitations come, and your phone never rings for a playdate, because all the other parents of kids in your child's class think "he probably can't understand", "it might be too overwhelming for him."...and you know that they realize this, even if they can't tell you. You watch comedians and celebrities do "the retard voice" and pretend that the person is a complete moron. Who are you imitating? Whose voice is that? Retard isn't a slur, huh? If my life is meaningful because I make it important to educate people to the beauty of neurodiversity, don't kick me in the face. You can talk to me, you can learn from me, but what happens when one of your children is born with a special need? Then will I be "too sensitive"?
Now, if that wasn't annoying enough, One of our mutual friends "liked" the post, and the other one commented "I completely agree." My eyes swim with tears because Chandler is playing a few feet from me with his blue ball. The word is like a nasty taste in mouth. Retard. It's not like a racial slur huh? Okay, Why don't you walk up to the parent of a gay child and say "fag", or a black child and say "what's up nigga?" Does that feel a little off? Maybe you don't know any families with special needs. My son has autism. And these people when they have to look at my face will say, "Oh I didn't mean your son." Who did you mean then? Because my other friends have children with PDD/NOS, Aspergers, William's syndrome, Smith-Magenis, Downs...? Which one?
I'm tired of hearing people say that it is just a synonym for lame, stupid, or dumb. My child is none of those things either. I'm also sick of hearing that I'm being too sensitive. When you have to see children that are ostracized at school, that are taunted and called "retard", when it's your friends children, and people you care about, how would you feel? Many of my friends don't know a lot about autism. Chandler doesn't speak, so they think he doesn't understand. Many assumptions and myths, and stares. Sometimes I get very wrapped up in the education of strangers, but I am missing an important piece here. My friends that I don't see as often as my autism "family". You need to get how important this is to me. My child is smart, and funny, and totally handsome. He also has some things you don't. He picks up on vibes around people, he knows when people are nervous, sad, sick, and tense. He can hear things before you can. He knows what the weather will be. He has better balance than almost all children his age. He might even be smarter than you. When you think of a concept like red or mad. He feels all of it. None of the most powerful illegal drugs will get you to a bar of existence that he has. He interacts with his environment, and never judges anyone. Ever. Even when others stay away from him because they are afraid of what they don't know. When, as a parent, you hear assumptions, stereotypes, and watch as no birthday invitations come, and your phone never rings for a playdate, because all the other parents of kids in your child's class think "he probably can't understand", "it might be too overwhelming for him."...and you know that they realize this, even if they can't tell you. You watch comedians and celebrities do "the retard voice" and pretend that the person is a complete moron. Who are you imitating? Whose voice is that? Retard isn't a slur, huh? If my life is meaningful because I make it important to educate people to the beauty of neurodiversity, don't kick me in the face. You can talk to me, you can learn from me, but what happens when one of your children is born with a special need? Then will I be "too sensitive"?
Sunday, June 12, 2011
Pushing on...
'Cause sometimes you feel tired,
feel weak, and when you feel weak, you feel like you wanna just give up.
But you gotta search within you, you gotta find that inner strength
and just pull that shit out of you and get that motivation to not give up
and not be a quitter, no matter how bad you wanna just fall flat on your face and collapse....Eminem
Sorry for the language, but its so relevant. Parents of children with special needs of all kinds have a power in their being. A glowing inner light that is always there, and some days you need to recharge it, but some days it shines and you are surprised by the adrenaline, the fierceness, the give that you have. Like you would give your all, your strength 'til it gives out, your blood and tears, and your life for your child.
I had someone say to me once, "You only do what you do for autism to look good. To make yourself look better in the eyes of others." This really needs no answer, no response, but I want to respond. I held onto that thought as a nasty remark to disregard, but one day I gave it the thorough wringing out that I needed to. Do I? Is that what I do? What do I gain from my struggle, and my efforts? Relief of guilt? Satisfaction of doing people telling me I did something good for my child and others? I settled on a mix of a knowing, sad smirk of forgiveness and a recharge of my glowing drive. Screw that. I give my everything to make my child's life better, to raise the quality for all children I know, and all families I know that have to struggle with autism, or with any need. I have seen parents worse off then me. I have seen the same, shared pain and the hopelessness, and the sadness. I have seen the joy, the return of hope, and the passion my fellow moms have. I will help you if you ask me. I will bring you dinner, I will watch your child, I will find you an article you need, I will be there as a shoulder, a listener, a friend. And I will not turn away from those who need it most. I do not hold grudges, I will not stand against those who make mistakes. We all make mistakes. Do I do what I do because it feels good? Hell yes. Is my child at the center of everything I do? Absolutely. This is my life's fight. Its what I go to school for, its what I live and breathe. My life is meaningful because of autism, and if I help one parent, one child, even just mine, I consider myself a success. LOVE. Nicole
feel weak, and when you feel weak, you feel like you wanna just give up.
But you gotta search within you, you gotta find that inner strength
and just pull that shit out of you and get that motivation to not give up
and not be a quitter, no matter how bad you wanna just fall flat on your face and collapse....Eminem
Sorry for the language, but its so relevant. Parents of children with special needs of all kinds have a power in their being. A glowing inner light that is always there, and some days you need to recharge it, but some days it shines and you are surprised by the adrenaline, the fierceness, the give that you have. Like you would give your all, your strength 'til it gives out, your blood and tears, and your life for your child.
I had someone say to me once, "You only do what you do for autism to look good. To make yourself look better in the eyes of others." This really needs no answer, no response, but I want to respond. I held onto that thought as a nasty remark to disregard, but one day I gave it the thorough wringing out that I needed to. Do I? Is that what I do? What do I gain from my struggle, and my efforts? Relief of guilt? Satisfaction of doing people telling me I did something good for my child and others? I settled on a mix of a knowing, sad smirk of forgiveness and a recharge of my glowing drive. Screw that. I give my everything to make my child's life better, to raise the quality for all children I know, and all families I know that have to struggle with autism, or with any need. I have seen parents worse off then me. I have seen the same, shared pain and the hopelessness, and the sadness. I have seen the joy, the return of hope, and the passion my fellow moms have. I will help you if you ask me. I will bring you dinner, I will watch your child, I will find you an article you need, I will be there as a shoulder, a listener, a friend. And I will not turn away from those who need it most. I do not hold grudges, I will not stand against those who make mistakes. We all make mistakes. Do I do what I do because it feels good? Hell yes. Is my child at the center of everything I do? Absolutely. This is my life's fight. Its what I go to school for, its what I live and breathe. My life is meaningful because of autism, and if I help one parent, one child, even just mine, I consider myself a success. LOVE. Nicole
Sunday, June 5, 2011
Mosaic
Subscribe to:
Posts (Atom)