Wednesday, April 29, 2009
After leap frog ended, she got back in the group, and ran her little heart out, doing laps around the soccer field. She is (mostly)running over two miles now, leading up to a 5K at the end of May. It is incredible. She's right in the middle of the pack. Not the fastest, but definitely not the slowest.
Later that night, she wrote an essay for a national contest. The topic was How has Girls on the Run helped you to be more fearless? With her permission, this is her entry:
I am learning about this thing called Girls on the Run. It's about self esteem. Here are some things that I learned on Girls on the Run to help me be more fearless. I remember the time when my mom told the whole group about Asperger Syndrome. That was really fearless. Another thing that kind of stresses me out on Girls on the Run, are activities like racing relays and timed activities that made me nervous, but I've gotten through it. Another thing I have to say is that in the beginning of Girls on the Run, I was afraid to join the group in free play. But after that, the girls let me play, and now I am comfortable playing with them. Another thing is I was worried I wouldn't keep up with the girls in running,or make any friends. I have learned lessons about standing up for myself and not gossiping or bullying. I am doing this other thing called Circle of Friends, and some of the people coming to it are from Girls on the Run. Others are in my class at school. I think Girls on the Run is a good way to get along with other people and help the world.
*The cut off date is May 1. Not wanting to take any chances, Proud daddy HT went to the post office and spent almost $20.00 to have her essay overnighted! Keep your fingers crossed! The grand prize is $500.00!
Tuesday, April 28, 2009
The music therapist/instructor talked to both of us for a bit, and then asked if it would be okay for mom to wait in the next room. Riley said yes. The instructor let her look at all the instruments and the first one Riley went to was the drums. She used her foot for the first two beats and then hit a drum with a stick.
The teacher told Riley to go ahead and make up a second rhythm.
Bang-bang-boom-boom, with the sticks.
They played around on a keyboard and Riley's body could hardly contain her glee at the synthesizer sounds. She plunked out Someone's in the Kitchen with Dinah on her own. The instructor taught her some chords. She beamed.
Next, she used a microphone to sing as the teacher played piano. She hadn't sung that song in years and was rusty on the words. Her voice is so sweet. I'd never heard it amplified before. It is soft and pure and angelic.
The instructor once again set her up at the drums. Told her to use the first rhythm they tried, then change it at the bridge to the second rhythm and then, hell, why not sing along? Here's the microphone.
So Riley is playing the drums with her hands and her feet, the therapist is playing the piano. Riley is singing into the microphone, and she stumbles on the words.
I held my breath.
She raised her hand, drumstick high, and cried, "I need the words. I don't know them."
The instructor got her the words, ASAP. They were back in business.
So Riley is playing the drums, with her hands and her feet, the therapist is playing the piano. Riley is singing into the microphone, fi fi fiddly ei oh and reading the words off a piece of paper on a music stand, and she is keeping up. She changes to the second rhythm seamlessly at the agreed upon time. She makes it through the whole song. She hits the cymbals with a flourish at the end. The teacher calls her, "Music Girl!"
They invite me in for a second round. Riley does not know I've seen the first. They get halfway through and she loses count.
Again, I hold my breath.
She resumes, getting back in time with the piano. She keeps playing. She keeps singing. She absolutely glows at the end.
She's an ace.
She's in like Flynn! She is so excited to be going to music camp (granted with a mandatory private aide, paid for by us).
And I think of this!
And I think of this!
And my heart is so full of love for this child who tries harder than anyone I've ever met.
And I love her when she melts. And I love her when she soars. And I love her for cracking my heart wide open and for changing me in every imaginable way.
Monday, April 27, 2009
When Riley was three and Seth was 11 months, I spent four days in St. Croix. I was on the verge of a nervous breakdown. Riley had been screaming for a year and a half. Seth had all the needs a baby brings with them. We had no family nearby and no support. Pediatricians were blowing me off left and right.
My friend Julia was working as a nurse midwife on the under served island for two years, having her grad school paid off while she did it.
"Come here," she said, noting my exhaustion.
I cried my eyes out, feeling like a failure as a mother, needing to get away from my kids. I did need it though. I was having visions of ending it all. Driving us all off a cliff. I could not fathom 20 more years of this kind of screaming hell. I sobbed on Todd's shoulder, as he forced me to go. No judgements. "You need this," He said.
In St. Croix, I sat on a beach chair, and decompressed. I talked to no one. I sat under a palm tree, bag of books to my left. I read a little. Slept. Read a little, slept. I ate a fruit and cheese plate every day for lunch from a little beach restaurant nearby. The mangos were to die for. In the evenings when Julia got home from work, we had nice, relaxed dinners. Sometimes at a restaurant. Sometimes at her apartment.
It would be another year before we got bio-med help for Riley. We moved to Virginia, and stumbled upon Dr. Mumper, and MB-12 and the screaming dropped dramatically.
When I got home from that trip, it was late at night. The house was spotless. The babies were asleep in their rooms, wearing t-shirts reading, "I love Mommy." Todd bought them while I was away.
That trip saved my life. It buoyed me for a while.
Todd knows I have been exhausted lately. Today is the start of three weeks vacation for him. First thing he did was get me fresh fruit and cheese. He knew the mangos would remind me of St. Croix. He knew I was needing some care.
Saturday, April 25, 2009
So I'm two cars back, waiting my turn, knowing it will come, and the guy in front of me pulls out. It was his turn. And a woman, blows through the stop sign, and almost hits him. She barely even stopped at all. And then, she turns and flips off the guy she almost hit, and gives him the dirtiest look, and I said out loud,
"You, are an idiot."
Now I know you don't like that word Carrie, but could you give me a substitute? I would never in a million years think of your sweet son, or anyone with Down Syndrome, etc. as stupid, or idiotic, (quite the contrary) but I do think there are people out there, not mentally handicapped (is handicapped the wrong word?) who fit those terms.
So anyway, after witnessing the close call, I took my turn and as I was on my merry way, I heard Riley sobbing in the back seat. I reached back and patted her leg, and asked,
"Sweetie, what's the matter?"
Seth piped in, "She thinks you called her an idiot."
She had been talking when I said it, and I got lost in the transaction taking place, and forgot.
"Riley, never, ever, EVER, ever, ever, would I ever insult you. EVER. You got that? NEVER."
I explained what had just happened, and apologized for using a not nice word, but assured her it was NOT in reference to her.
"Okay," she whimpered.
And it just breaks my heart, because how could she possibly think I would ever say anything hurtful about her? How could I have given this child everything I have for so long, only to have her doubt me like this? I have never insulted her. I have never even cussed in front of her(yes, I want a fucking metal).
I have done everything I possibly can to nurture her, to protect her heart, and my beautiful daughter, whom I love to the depths of my soul, thinks it quite possible I might at any given moment, call her an idiot.
I know I shouldn't take it personally. I know this is the autism. The black/white thinking.
It hurts though.
And I think there is some lesson in this, that when we hurt one, we hurt all. When we insult one, we harm the whole.
I'm not quite in a place where I can fully hear it, but I'm willing to consider the possibility.
Friday, April 24, 2009
Wednesday, April 22, 2009
Ohio schools are having standardized tests this week. Riley reminded us she had to be to bed early. She could not have cinnamon/sugar on her toast in the morning, because they told the kids no sugary breakfasts.
At school, she found herself exempt from the exam, because she scored so high on the last one.
Smarty, smarty, smarty! My girl is a smarty!
Instead, she went to Seth's kindergarten class to "help the teacher." She was working with a little girl on counting money, when she noticed Seth doing a different activity across the room. She became concerned and told the teacher, "Seth doesn't know how to read. I have to help him."
She ran over, and once she was satisfied Seth was okay, (he can read a little) she went back to the child she was working with.
Helpful, helpful, helpful! My girl is helpful!
She also was flexible this week at Girls on the Run. It poured and we had to take it inside and jump rope instead of run. She jumped rope in a crowded hallway with 20 shrieking girls. Up an incline. Even though she tripped up a lot, she kept going. Kept trying. No meltdown.Flexible, flexible, flexible! My girl is flexible, and determined, and brave!
We had an IEP meeting yesterday. Her teachers are awesome. They love her. She's thriving.
Now juxtapose all this, against the bazillion hours of therapies she's endured, against her screaming for 2 1/2 years, against the slew of supplements she still takes, against the MB12 shot she gets every other day, against her getting kicked out of preschool when she was three.
You'd brag too, wouldn't ya?
Tuesday, April 21, 2009
Monday, April 20, 2009
Do you need any shoe cleaner?
No, thank you.
Can I get your phone number to put you on our mailing list?
Would you like to open a store credit card? You'll get 10% off?
Would you like to donate to The March of Dimes today?
You don't want to help the preemies?
OMHOG! QUIT HOLDING ME HOSTAGE YOU FREAKING CASHIER NAZI WITH THE HEADSET!
Will I ever go to that store again?
Sunday, April 19, 2009
Last year, when I started querying, my body broke down. My thyroid wasn't liking the whole process. I had hot flashes and mood swings, and felt like crap. I stopped querying and got my physical health back together as best I could. I was still carrying the 10-15lb weight gain, but I felt pretty much like my old self.
Recently, I started querying again. I also got brave and let several friends read the manuscript. Then, I shared it with a group and got good feedback. Each person who has read it, contradicts the last person with their suggestions, it is so subjective, but overall the sharing has been a good experience and the feedback positive.
And now my hot flashes are back. And I feel like crap. I'm really, really starting to think this memoir I worked so long and hard on, is not the path to my joy.
Talking with a friend about it, she told me a parable, or maybe it is a true story from the island she grew up on, I'm not sure. She said they poke a small hole in a coconut and put seeds in it to capture monkeys. The monkey reaches into the coconut to retrieve the seeds. The monkey wraps its hand around the seeds, but when it does so it cannot fit it's clasped fist back through the hole to get it out. If the monkey would let go, it might be able to get the seeds another way. It would surely have it's freedom. But instead, the monkey remains trapped.
Before writing the memoir, I spent my life trying to hide the shame I felt. Shame showed up in many forms but underneath it all was the feeling my parents did not care enough about me to provide the love and safety and comfort every child deserves. I internalized it and thought I was inherently unlovable.
After a lot of work, I had already reached a place of forgiveness for my parents, but had not rid myself of the shame. Writing the memoir took me from shame, to pride at the life I had transcended. Instead of shame, I feel compassion for the young person I once was.
Compassion. Let's talk about compassion. Aren't my parents also wounded people who simply were not capable of parenting, due to their own sense of shame and worthlessness? Neither one had an ounce of self love. How could they love anyone else? I am not condoning anything here, or shooing anything under the rug, but haven't they already been through enough? When does the chain of pain end?
Perhaps one day I will fictionalize the whole thing. I do think there is value in the story. Readers will come away with compassion for kids, perhaps giving them the benefit of the doubt. Perhaps choosing kindness instead of something else when interacting with children in their lives. You just never know what kids are going through at home. A couple of years ago I would have been furious if someone had suggested fictionalizing. I would have cried, "But this is my truth!"
I know what's true. I no longer need anyone else to validate it.
Am I merely afraid it will never get published? I don't think so. I feel strongly if I keep plugging away at it, some agent will eventually bite. I always succeed at what I set out to do. Though sometimes, I do give myself permission to change my mind.
Writing this memoir healed me of shame. It taught me I can indeed write. I had the opportunity to share my very most personal story with people I trust. I am so very grateful for every person who has read my manuscript. What an honor you gave me, bearing witness.
That being said, pursuing publication of my childhood memoir, at least at this time, in this form, is not the path to my joy.
The monkey is letting go.
Let's see where freedom takes her.
Saturday, April 18, 2009
Friday, April 17, 2009
Thursday, April 16, 2009
"You must be focusing on how much you love me, right?"
Out came one little hand from under the covers, pointer and thumb indicating she loved me about one millimeter.
At least she still had a sense of humor.
We did our morning meditation. Todd had to work early so it was the three of us on Riley's bed. She reached for my hand. We held hands. Heaven.
They got up, got ready, had breakfast, played Littlest Pet Shops, until she refused to let Seth have any input into the playing. He stalked out of the room, she SCREAMED.
Time to go.
Pleasant walk to school. Both of them chitter chattering. Sunny day.
We get to the playground, and a bunch of little girls are heading our way to greet her. Awesome! She turns and runs in the opposite direction. She does not want me near her. She is embarrassed her mother and brother have to walk her in. She runs. Down the sidewalk fifty yards.The girls stop in a group, not knowing what to do. When I approach she starts spinning. Literally spinning, and stomping, backpack bumping, stomping stomping in anger.
Embarrassed about her mom, not embarrassed at all about making a huge scene.
"She's going to make me late again. She always makes me late!"
I look around and there is another parent I know and trust. They live on our street. He's over by where the kids line up. He knows Riley. He knows enough.
I make a snap decision and shout casually from ten yards away,
"Riley, you go on. I'm walking Seth in through the kindergarten door."
We turn and walk in the opposite direction. She immediately deescalates, and heads toward the girls. They walk over toward where her class lines up.
I zip Seth into his class fast. For ninety seconds she is out of my site. I run down the hall to a window where I can see her. She's lined up. The neighbor parent is still there. She can't see me. She's okay. She was so ramped up, the slightest thing might set her off. But she's okay.
I walk through the building to leave, passing her class. She is fine. Unpacking her book bag. She doesn't see me.
It is good she wants to be independent.
I'm celebrating it about a millimeter right now.
Wednesday, April 15, 2009
Little Man isn't diagnosed, but he is clearly, CLEARLY, clearly on the spectrum. He's got some tics. He rarely speaks. He climbs under his desk, covering his ears with his hands during class parties. I don't know what his home life is like. I've never met his parents. I do know he's in the right class. They throw a lot of undiagnosed kids into the inclusion class. It's an undiagnosed kid's best hope. A bit taxing on the teachers, and it runs the risk of no longer being an inclusion class, but it's the best hope for these little kiddos.
So Little Man is in "Before Care" which is basically run by two lunch ladies. I'm not sure if they are actual lunch ladies but that is how qualified the two seem to be. No offense to any lunch ladies out there, but from my own experience as a child, most of you suck.
I happen to have gone in through a different door this morning because it was raining and I had two extra neighbor kids with me so I drove and parked in the lot. We had to walk through the Community Room where Before Care is held, to enter the school.
Little Man was in trouble. Little Man probably didn't process a direction correctly. I say that because Little Man is not a trouble seeker. He's pretty quiet and to himself. So the lunch lady sat him all by himself at a table on the other side of the room. Then it was time to line up, and all the kids lined up, and Little Man went to line up too and she reamed him out.
"I DIDN'T SAY YOU! YOU GET BACK TO THAT TABLE. I DID NOT TELL YOU TO GET UP!"
The hate in her voice was palpable. He had already been crying, but he started crying harder.
At this point, the regular teacher was on her way down the hall to retrieve her kids, I intercepted and told her Little Man was having a hard time, and she, not really knowing what just went on intervened, taking him under her loving wing down the hall.
Walking through the Community Room to leave, I heard that old fucking bitty say to her partner in crime,
"I'd like to smack the shit out of that kid. Snot running down his face like that."
They didn't know I was right behind them.
Now, wish I could report that I took the bitch out, but when confronted with situations like this, I tend to freeze in disbelief. I froze.
Then, I turned and walked down the hall and unloaded the whole thing on Riley's special ed teacher. From there I went to the principal and reported her. And when I got home I called her actual boss, and I'm waiting for a call back from him.
So many people of that generation (and many of mine) think the answer to any behavioral issue is ripping a kid to shreds. You have to be pretty disconnected from All That Is to treat another person with such unkindness.
No one has EVER been shamed into connection.
Snot running down his face.
I have to figure out a way to not be her, to her.
Tuesday, April 14, 2009
Monday, April 13, 2009
It is agonizing for me to ask for help. The service dog was the first thing we ever enlisted anyone else's help with. Other than that, we've had zero outside support, ever, for anything. It has kept me up at night, scrambling about the activities we will do, and questioning whether this is the right thing to do.
But her eyes. You didn't see her eyes last week on the playground, as she sobbed, and told me how lonely she was. How un-included she felt. I have to do something.
The possibility of rejection is there too. I have more than one friend with kids the same ages as mine, who know how much she struggles, but still can't find time to get our kids together once in a while. How can I expect virtual strangers to get on board? But we already have one yes. And I believe in this community.
So, here we go. I love my girl.
I am writing to you because your daughter has been kind to Riley and I would like to include _______in a group we are starting. As you know, Riley has Asperger’s. One of the traits of Asperger’s is social awkwardness and though Riley desperately wants friends, she doesn’t always understand social nuances or how to navigate the complicated social scene of little girls. She is terrified of asking others to play, or of joining in groups, because she is afraid of being rejected. This year she has become painfully aware of her social isolation, noticing other kids going on play dates after school. As of yet, Riley has never been invited to a friend’s house to play. We have had many tearful afternoons because of this.
I am looking to start a neighborhood Circle of Friends program for Riley. It will be a small peer group (five or six girls)that will help Riley learn about social skills, and provide her with friendship and social interaction. We would meet in our home once a month, do a team building/self esteem type group activity, and then rotate through with weekly play dates. Initially the play dates would be at our house, and after that, perhaps occasionally at yours. It would work out to one play date every five or six weeks if you choose for your child to participate, and if she is willing.
By knowing Riley better, your child will have the opportunity to understand a peer with differences, but who fundamentally wants the same things they do; to feel liked and good about herself. Riley is more like your daughter than unalike.
I know families are busy, and I promise we won’t be trying to force BFF status onto your child. We’re just looking for a series of successful play dates, and for better community understanding of our sweet girl, who is always trying her best.
If you are interested and if your daughter is willing, please let me know. I’m looking to start this in May (Wednesday the 13th) and carry it through the summer if possible.
Thanks so much! It takes a village, especially for a child with special needs.
Riley’s mom (phone) (e-mail)
Saturday, April 11, 2009
One of her classmates is having a birthday party there today and she wants to go. She wants to go. God help me, she wants to go.
HT is working, so I have to bring Seth. This can be tricky because if she changes her mind at the last minute, or once we're already there, I'll have two crying kids to contend with.
But she wants to go. And I have to allow her to be her own gage. She's already said she feels nervous. Not a good sign. Hopefully karate will get some jitters out.
Cover me people, we're going in.
Friday, April 10, 2009
Shortly after, Riley was found leaning against the playground fence, weeping. She didn't understand why her classmates would be so mean. She felt sorry for the boy. She was so heartbroken, she had to be led inside by a school aide. All this about a boy who'd been bugging the crap out of these little girls.
The whole notion of kids on the spectrum not having empathy chaps my ass.
All I'm sayin.'
Thursday, April 09, 2009
Wednesday, April 08, 2009
"Maybe they hate me because I have Asperger's," she cried.
She's not being bullied. Just ignored. Not included.
She's believing she's not likable.
Nothing I say soothes her.
Just put her to bed. Snuggled with her extra long.
She gets a break when she sleeps.
My turn to cry.
But I can't help her from here.
A problem can't be solved from the level of the problem.
I'm taking it to a Higher Authority.
This little soul went to a lot of trouble to be here. If she can't see her worth right now, I'll hold it out for her like a flag, waving it in front of her. I'll keep that vision of her so steady she won't waver long.
We have a lot of work to do, but so what? We've already been to hell and back.
And it's still early.
Tuesday, April 07, 2009
Monday, April 06, 2009
Sunday, April 05, 2009
She was frantic. He'd tried to strangle her. She looked like a crazed wild animal.
He had physically attacked her, but that didn't seem to be what bothered her.
"He called me bitch and bastard," she said, like a five year old tattling on a classmate. She wanted us to be aghast at the verbal abuse. I was way more aghast over the fact he'd tried to kill her.
I remember thinking, he doesn't even know how to throw out a proper insult. You don't call a woman a bastard. As we waited for the police:
"He called me bitch and bastard."
"He called me bitch and bastard."
yeah, I heard you
"He called me bitch and bastard," she pleaded, wanting me to get the full gist of the offense.
The incident made me realize how much we make our own meaning of things. Words, situations, other people's actions. "Bitch and bastard" meant nothing to Todd and I. If the man had called us "bitch and bastard," we merely would have been amused at his poor command of the English language(not that either of us can speak a foreign language so no, we really can't talk).
Now please, please don't hate us. We do not think domestic abuse is funny. But every time someone insults one of us, Todd and I say,
"He called me bitch and bastard."
It takes some of the sting out of it. Not that we get insulted a lot, but say, a doctor is rude to Todd on the phone at work, he might say "Dr. So & So called me bitch and bastard."
It means, it doesn't mean anything.
A couple of weeks ago, I sent an old friend a short message on Facebook. A guy I worked with in my early twenties. We were friends, then I developed a crush on him. When I disclosed my feelings, he gave me the old, "I don't want to sacrifice the friendship" line, but the friendship was sacrificed. We lost touch. I cringe to this day thinking about it. It's embarrassing.
Anyway, Todd knows the whole pathetic story, and he knew I sent the guy a Facebook message.
Facebook does that to you. You start thinking about people you knew from various times in your life. I was a bit of a mess when I knew him, working through childhood stuff, and I guess part of me wanted him to know I turned out okay. Besides, we were friends. He was a decent guy. I liked him and was curious about how his life had turned out.
He never responded.
Fully offended, he replied,
"That bitch and bastard."
I cracked up.
Then he hugged me and added,
"I sure owe him one."
Smiling, I buried my head in Todd's chest and inhaled him.
Of the other guy?
Thank God he was never into me.
Saturday, April 04, 2009
I miss the little screw on wrists, and slobbery mouths. The cheeks. Look at those pudga wudga hands. Look at those little piggies! I bought that outfit a couple of years before Riley was born. Had to have it when I saw it. Knew I'd have a girl.
The picture of Seth was part of an antiquey package; a surprise for Father's day. HT loves the Kenny Rogers song, The Greatest. A baseball was the perfect prop.
When our kids were tiny, HT would get offended if he was out in public with them and no one commented on the cuteness. He'd come into the house, miffed, muttering, "What is wrong with people!?"
I like that about him.
Friday, April 03, 2009
Thursday, April 02, 2009
People, this was nursing school. I was 29.
Looking back I can see clearly, Betsy is on the spectrum. She had no doubt been through years of grueling therapies and interventions to get her to the point of successfully completing nursing school. She did have a couple of friends, foreign students who were also getting special tutorial help.
Riley is heartbroken over play dates. Day after day, little girls pair off and go over to each other's houses for an hour or two after school. No one ever invites her. They are polite. They don't pick on her or make fun of her, but she's not included.
How can I expect nine year olds to do what I couldn't bring myself to do at almost 30 years of age?
I wish someone had taken me aside, and told me all about Betsy. What a triumph it was for her to get into that very challenging nursing program. How hard she'd worked all her life. What an amazing person she was. If someone had explained her to me, it would have been different. By my own ignorance, I missed a gift.
I am considering drafting a letter to several parents of little girls in our neighborhood, hoping to score Riley some play dates. Most of them already know she has Asperger's, but I don't think they realize exactly what that means for her. Maybe they are afraid. They could never know how hard she's worked or how far she's come. It probably doesn't even occur to them that she spends every afternoon alone while their daughters giggle and snack and play.
My fear is they'll ignore my request, or their kids won't want to play with Riley and will be forced to, begrudgingly.
I can't make them like her, but if they get to know her, they might. Often Riley's body language doesn't seem approachable, but once she knows a person well, she can be quite conversant and she is so very sweet.
I just keep thinking about Besty. Wishing I had handled it differently. Wishing I had known more. Wishing I had been a better person. I am ashamed I didn't allow myself the gift her friendship would have been.
It would also be a shame for the little girls in our neighborhood to miss out on the opportunity to know Riley.
The more we know, the better we do.
Wish us luck.
Wednesday, April 01, 2009
HT and I realized some things over the last few days. Home improvement brings up tornadoes in each of us and when they collide, it is annoying, painful, ridiculous, juvenile...did I mention painful?