Friends and Family night

When you have kids, there is always an activity that includes friends and family night! That means grandpa Bob comes to the pottery class, or grandma Joyce comes to play frisbee in Sports Sampler class, and the stay at home moms bring dad along and other toddling children with sippy cups who are squealing at their older siblings. I bring Chandler. While the other families play together, I sit on the side of the gym while Chandler spins around on the floor, his track pants allowing him to spin as fast as his arms can twirl him in a circle. Tonight for my 4 and 5 year old's sports class, the class party included pizza, and a (oh god) bouncy house. Chandler lit up like Christmas, and looked expectantly at me, gesturing with his hand over and over again. Tears were sitting there in my eyes, ready to fall as I told him, no baby, you're too big. He doesn't meltdown like he used to, now he looks sad, and that breaks my heart far worse than meltdowns. I saw some other siblings allowed to jump during pizza time, and a pony tailed volunteer helper coach said Chandler could play. (Thank you Jesus)...so his world was complete tonight. After he tired himself out jumping and laughing, I saw him go to the side of the inflatable castle and put his fingers up on the mesh, hooking them there, and staring out at the other kids running wild across the gym floor, their little giggles echoing wall to wall. When the bouncy house time was over, he sat again on the side of the gym with me while the boys played "shark". Elliott took his brothers hand, and said "Come on Chandler, let's run." And they did. All the way to the other side of the gym and back. After that, all of a sudden, he was comfortable enough to spin, to run, and even at a full foot taller than the kindergartners playing, he was thrilled. I was thrilled. Family night indeed. Thank you Elliott. It's never the same to have your mom encouraging you to run across the gym with other children. At 5 years old, I can't tell you how much I need you, but one day you will read this and know.

Just a glimpse...

Life is short. Really short. I am a "girl" when it comes to t.v shows and movies. I keep hoping for different endings to Titanic, and the Vow, etc. I watch Parenthood like its a religious service, and I empathize with the characters. I wondered if they wrote Kristina's breast cancer storyline in because people didn't really like her character. She was always so uptight, and kind of bitchy. But I can't help but rooting for her now, and crying when she cries, and loving the way Adam is trying his best to be supportive. Funny how even in fiction land, one moment can change your thinking, your mood...Can this kind of emotional shifting be useful?

Certainly. I use music. I have a whole separated Ipod list to lift or level my moods. I am working on a different tactic now. Stopping what I'm doing to think and feel instead of staying on the crazy train of life. Too often I am in a rush, always in a hurry, chaos, busy....Everyone has the potential of catching these little moments..Today instead of taking the dog out and cleaning up the kitchen after I sent Elliott to the bus, I stayed with the door cracked open to watch him. Here was this little blonde girl with the brightest smile and a voice that sounded like bells "Hi Elliott!!" she called from across the street, he ran to her with his "fastest shoes", slipping his hands shyly in his pockets. She asked  brightly, "Did your mom spike your hair?!" and he said "Yes.." smiling and looking down at the sidewalk. This is the "best friend" he has been talking about. I loved everything about this moment. My feet frozen from standing on cold concrete, I heard the bus coming, and went back upstairs. The moment you slip on warm fuzzy socks, the moment you take the first sip of hot coffee on a cold morning, the moment you see your child fall asleep, say a word, make a friend. It's all precious, and short. They say to savor those moments, but do you? Try harder....its so worth it...

Bedtime in the fall

I always walk downstairs at bedtime to check on Chandler. It's the same routine. I pull myself up and stand on the bottom bunk, my barefeet digging into the snowflake sheets, my one arm hanging on the metal guard rail while I peek over to see if he's sleeping. I take the Elmo pillow case covered pillow off his sweaty blonde head.  I pull up the fleece covers with beautiful puzzle pieces, I look around the room at the way he "arranges".., the TV making the room glow. Some nights, like tonight...tears roll down my face. He looks so "normal". What would my life be like with a nine year old who likes Transformers or talks incessantly about science class? He breathes in softly as I exhale ragged heavy breaths. I run my fingers through his hair as I hear the Backyardigans singing about cops. He puts movies on to fall asleep. Like me. And sometimes I wonder if I have left him alone too long tonight. I should have been working on words..I should have been working on math...I grieve the child I don't have again tonight, and I walk upstairs and pour a glass of wine. It's sweet and floral. It washes over the taste of sadness that is salty tears. I love the son I have. I love so many things about him. But I have my nights to hurt. Tomorrow will be a different day.

Inclusion

This week I had an appointment with Emily from Minot State, with the SATT project. They work with families on apps to use on the IPAD. We were working with an App called Iprompts. I am hoping to use it with Chandler to be a streamlined visual schedule. It's not as difficult to use as proloquo, and not as extensive. Maybe this can be a bridge to later using that app. My dream of having Chandler communicate fully using technology is like a long, winding road with holes in it. It's confusing, and all along the way you find these little gems of apps that will lead to another word, and another functional phrase.
While waiting for Emily to arrive,  I ordered him a carrot cake muffin. He pointed at it, and said "cake". On the plate at our table, he pointed at the little bright orange frosted carrot on the top and made a scrunched up angry face, so I removed it with the fork. He happily took one huge bite (I am secretly hoping he loves it so I can sneak veggies into cake). He made an even more disgusted face, but politely pushed it away and said "All done", turning to his huge cup of milk.
We moved to the corner table when Emily walked in, so we could charge IPADS and talk without being in the open. Chandler wandered around Caribou coffee checking out the pastry case, looking out the windows,...so I allowed it. It wasn't extremely busy, and he wasn't approaching anyone...well, not until I wasn't paying attention. After a few minutes, I looked up to see him standing at a table with four men. He hardly ever engages people on his own, unless he finds something interesting. This one particular man had a gray, handlebar mustache. Chandler was smiling and staring at him, jumping up and down just a little bit. I did my usual "Chandler! Chandler!" running halfway across the coffeeshop, "Excuse me, I'm so sorry!". Waiting for the usual response of stares or polite "No big deal"'s or no response at all. But today would be different.
One of the men at the table said "I have seen him around the community. He is always so happy, and full of energy. He isn't bothering us at all." I didn't recognize him, so I explained that his staff brings him many places also. Chandler proceeded to sit down with his milk, and when I said "Chandler come back and sit with mom", he gave me a disgruntled "NO!" and began to draw on the chalkboard. He eventually resumed wandering, and when we left, he stopped at their table. They all said, "Bye Chandler! See you later buddy!" and Chandler said "See ya!" and was smiling ear to ear.
Thank you, thank you to that table who took the time to talk to him, and talk to me. As parents, we are so use to the stares and whispers, we don't expect anyone to go out of their way, but it means so much. It makes our day. It makes us feel we are welcome in the community, that we are a part of it. That little thing that we advocate so hard for, just to BE there. It shouldn't reduce us to tears when someone has a kind word for our children. Please. Be the person that speaks that kind word. Approach us, ask questions, make comments. Saying something isn't rude! Remaining silent is far more uncomfortable for us. That thirty seconds changed my whole day, and I can't imagine how my son felt. Included.

My son, the gardener?

You know I never think about what my son will be like as an adult....(that's sarcasm). I think about it every day. I wonder if he knows his life is different, or if he cares. Maybe he sits and thinks the same thing, what will I be when I am big?  But maybe he won't ever care about all the things we care about. Money. Careers. Stress. Time. Maybe in his world, time doesn't happen like it happens for us. All that work in school trying to teach him Monday, Tuesday, Saturday. Maybe inside he is laughing or annoyed because he doesn't care that its Monday again. What he knows is happiness. When he's watering his flowers. And love. He knows love. Maybe he is luckier than all of us.

Blindsided by a sippy cup lament....

One of the things Chandler does well is travel. He could sit for hours in the car simply watching the cars and trees roll by. Armed with my stash of cereal, ipad, and stim toys, we can take him anywhere. This weekend's venture was a trip to Minneapolis to recertify his therapy dog in public. Because he is older now, I don't notice stares anymore. If he has a meltdown, I have a service dog next to me, and my arsenal of choppy sign language to let people in on the fact that there may be something a bit different about my son. I am the mom with the IEP books under my arm, my IDEA laws in my back pocket, and my mom degree in autism. So when he is flapping on the way to the pool, or crying because the elevator door opened on the opposite side, or the mall is crowded and he plugs his ears and nose...That is not when I notice the autism. When I noticed it was at a quiet breakfast with just him in his buzz lightyear pajamas and I, in brand new pajamas I bought on the way due to remembering all things for the dog and Chandler and leaving my own bag behind on my bedroom floor. We got up early and followed the smell of waffles and bacon down to the lobby. There was your typical continental breakfast crowd who gets up by 8, grandparents feeding babies yogurt, the businessman in front of CNN with the paper, the elderly couple with rolls and coffee.... Chandler sat across from me with his strawberry yogurt, fruit loops, and milk. He wasn't stimming or talking, or wandering. Just quietly eating his breakfast. Listening to the grandparents next to me talk about how big their toddler granddaughter is, and the mothers lament about how she tried THREE sippy cups to finally get her to drink out of one, she just didn't know if she could take it anymore....I can't believe the unexpected moments when tears will come to your eyes. Chan got up to clean up his breakfast, and followed me upstairs. I promised him a morning swim. (Just a cheer moment here, Chandler learned to say "swimming" instead of just water.) So while he dressed for the pool, I took the dog outside. Three children loading up into their minivan made a beeline for her, I released her to visit with them. She sleepily allowed them to pet her, and rub her ears, and their grandma commented on what a nice, quiet dog she was. I explained to the oldest girl, who looked about my sons age, that she was a therapy dog who helped my son, because he has autism and doesn't talk. She looked at me in wonder, and then said "Well, he'll learn to talk eventually" in a very matter of fact voice. I went back up to the forth floor, rounded up my son in his new robot shark trunks, and on the way down he began to stim. He gets so excited when he knows its about swim time, and he can't help jumping and flapping. There was a fiftiesh age couple in the elevator on the way down. I started talking to Chandler in the "explaining there's something different" way that I do, "Are you excited Chan?" "We're almost to the pool", etc. The couple smiled and the man said "Go get 'em buddy". The world is full of people both supportive and ignorant, and navigating the waters of acceptance is my job. Some days are rougher waters than others, and even when things are going perfect you may get blindsided and cry from the thought that some parents worry about sippy cups, and some parents won't ever have the struggle you have, but some may have longer, and tougher struggles, and worrying about the future is important, but not today....today we just keep swimming....

Carrots must stay across the room and the super moon!

This blog will be short. Moments last week were fleeting and bizarre. Full moons always made Chandler go sideways, or at least get amped up. Some things are funny, like when he stood in the way of anyone viewing the T.V and when we said "Move", he would yell "Hush!" He doesn't often tease, but when he does, its smirky and twinkly eyed and I adore it. Then food therapy, which is maddening, like trying to pour syrup in a blizzard, was more hideous than normal. This time she brought in cubed, cooked carrots (this is where I laugh and roll my eyes, but love her for trying), and Chandler screamed and made them stay on the plate across the room and across the WHOLE room only. But he sang more than normal (like when he flung open my bedroom door and yelled "We like to sing!" in Elmo's voice, and said more words than normal. You take the good with the bad, and I loved super moon. It was like the Christmas episode of your favorite sitcom, heartwarming and quirky. Just a little extended version of autism.