My Apologies to Kelle Hampton

There is an opportunity for healing here.

Recently I began following the amazingly beautiful blog of, Kelle Hampton. She’s a professional photographer. Her pictures are gorgeous. She has a little tow-headed three year old daughter, and the most exquisite baby girl born just a few months ago, with Down Syndrome. The story of Nella Cordelia’s birth sucked me in completely, and I’ve been reading Kelle Hampton’s blog ever since.

This mom is way more insightful than I was at her age. She is doing motherhood her own way, not listening to people who warn her how hard DS is going to be. She is a positive person. I believe in that, you know? It’s like, my thing. Law of Attraction. What you focus on gets bigger. My success is measured by my joy.

But lately, when I read her blog, (and seriously this has nothing to do with her) I can’t stand her. And not just because she looks great in a bikini a few short months after giving birth. Her beautiful story is bringing up so much pain for me.

Her little three year old, and the fun they are having, the sweetness and light of their relationship. It makes me cry. Because I wanted that. I wanted a happy little three year old girl. And my sweet little girl mostly just screamed at that age. And sometimes it is hard not to think about how much we missed. We weren’t having faerie parties. We were at occupational therapy, and autism doctors, and dozens of other therapies(not covered by insurance), etc. I wanted to be that mom. All laid back and fun, and crafty. But I was wasn’t. I felt like I was racing for my daughter’s life at the time. My brow was permanently knit. I wasn’t at the beach “sucking the marrow” out of life. I was worried. I was swimming in fear.

And then here is Nella. The most adorable little baby. I don’t know this family at all, but that little baby has my heart. I believe she will have the heart of every person she meets, her entire life. Her sweetness just oozes off the page of her mama’s blog. And it brings up another hurt.

Riley will never get the instant benefit-of-the-doubt Nella will receive.

It took years to get a correct diagnosis for Riley. I was so very alone as a new mother. No therapists coming to the house. No support from our pediatrician. No support from anyone, really. We had moved to a new state, and I hadn’t one friend nearby to bounce things off of. When Riley started having severe meltdowns, there was no one to hand her off to. How do you ask a casual friend, a neighbor, someone you don’t know well, to look after a child, who by the way, won’t stop screaming?

And this other blogger? She has such a solid support system. She has a whole huge community both physically where she lives, and on-line, celebrating her very special baby.

No one ever celebrated us. No one ever said, “Hey, you have a kid with autism, and it is going to be such an amazing ride if you allow it to be.”

No circle of women gathered around, treating me with reverence.

Todd did his best to support me, but he hadn’t a clue either. Both of us, relatively well adjusted ’til then, had panic attacks for the first time in our lives by the time Riley was three.

Oh how my heart goes out to those younger versions of ourselves. Oh that we managed to be kind to each other, under those circumstances, it just brings a lump to my throat.

And I thought I was okay. I thought we were in a mostly good place. But when I start finding fault with people, I have to stand back and ask, what’s hurting? Seriously, what’s going on? Especially if my fault with someone is that they are “too positive.” That’s just kind of funny, given what I believe. Oh ego, you are so very clever.

If given the choice, I wouldn’t trade the daughter I have for anything. She is mine and I am hers, and I do believe we’ve been together for lifetimes. She is the exact daughter I was supposed to have. I was meant to be her mother.

I had this very vivid dream back in 1994, before Todd. Six years before Riley would be born. A baby sea otter was taking me on an ecstatic ride, gliding me through the ocean. The love I felt for this little otter was pure God force. I’d never experienced anything like it. The love was so vivid, so powerful, so raw and wild, I woke up, my heart beating fast, and wrote it down. The next day I took the only medium I had at my disposal, and drew the feeling in crayon.

I forgot about the dream, tucked the drawing away somewhere, but the instant Riley was put in my arms it flooded back to me. It was her! The baby sea otter I loved. The baby that would take me to wild and amazing places. The soul friend-sister-daughter-mother who would lead me through the fire. I thought the drawing got tossed, but found it last year in a box that hadn’t ever been unpacked in several moves.

I have it framed in my office now. This drawing reminds me, Riley and I are doing important work here. We’re doing things I can’t even wrap my mind around yet. Kelle Hampton is doing her own important work. To entertain the thought that her life, is somehow better than my life? Source does not agree. And when we think thoughts that go against the truth of the Universe, it hurts! When we forget how absolutely vital each one of us is, to All That Is, that’s when we suffer. And when we suffer, we start finding fault with others.

And you know what? I never could have figured all of this out, if not for Riley and the places she has taken me. Loving her, has caused my heart to shift and open a  million times wider than it ever would have. My compassion muscles are really big now. This includes having compassion for myself, even when I’m ugly. Even when I make mistakes. Even when I think petty thoughts. But I can no longer leave things there. My soul won’t tolerate it. I have to dig deeper now.

So, my apologies to Kelle Hampton. Thank you for giving me this opportunity to grow. Keep “sucking that marrow” Kelle. You and yours are so very beautiful.

And we are too.

Posted in Asperger's, autism, Parenting | 14 Comments

July 4th

This morning, the kids took part in the Fourth of July bike parade on our block.

Much care was taken to decorate the scooters in red white & blue streamers, USA signs, and patriotic elephants.

Riley had her outfit planned for weeks, down to the last detail.

 

From the parade we hopped on the train and went directly to the baseball game.

It was Hot Toddy’s Father’s Day present from the three of us. Sports make him happy.

Riley surprised us again, by being heartily into the game. “Go Tribe!” she shouted.   

While I’m not really into sports, I’ll be a sport and go to a game now and again. My brain can’t possibly follow it. It’s like I’m genetically against sports, but I do have fun. You’d be amazed at all the things I can do and think about to pass the time. Taking pictures for instance. 

 Riley brought Alvin along, of course.

Ladies and gentlemen, meet Jonathon Livingston Baseball.

A quiz is in order for the next one, because I don’t know the answer. Is the man in the following picture:

A. P. Diddy

B. Usher

C. Some other beer drinking pop star I’ve not heard of

Help me out here. I don’t get out much and only watch things we TIVO.  TIVO, you are dreamy, BTW. I love you with all my heart and soul. Because of you, I never have to watch a commercial again. Except subliminal ones.

Speaking of dreamy, hello little fella.

The Indians lost, but I think HT had fun (Psst. he’s a Yankee fan).

He had to work the past two years on July 4th. It is so nice he has today off! We’re home now taking a breather. Fireworks tonight. Happy Independence Day!

Love.

Posted in Cleveland, family | 6 Comments

Sometimes a girl just likes to dream about beautiful kitchens…

I spent a lot of time in the kitchen yesterday. My tiny, tired, and get ready for it…

no-dishwasher-’cause-there-is-no-space-for-it kitchen. I know, I know. What was I thinking when we bought this house?

I could click through this designer’s blog roll all day.

Anyway…

Last night, Riley took a garbage bag full of shredded paper, and used it as “confetti” in her bedroom. It was Friday, which means Seth gets to sleep in her room on the air mattress. Seth, I’m sure, enjoyed the confettit too, but it was all her idea. I wondered why she was so adamant about helping shred all week.

What fun was had! Until I came in and had a meltdown. I seriously will be cleaning this up for years. It clogged the vacuum instantly. Once again, stuff she never would have done at three years old. She’s being quite sassy and defiant as well. Suddenly I have to watch her every second. I have to believe she’s moving through something, and I’m looking forward to seeing what’s on the other side of this.

For now, I’m going to dream about tidy houses, places for everything and everything in their places, beautiful spacious kitchens, and dish washers.

 

*Mad as  I was, a part of me was tickled because Riley has just never done stuff like this. Did I ever tell you about the time I found a half empty paint can and painted the Toyota and everything else in the garage pink…using my ponytail as a brush? I was four. Good times.

Posted in Uncategorized | 17 Comments

Touche’

Since she was tiny, we have done our best to correct Riley when she says something inappropriate. We know her heart, and know she doesn’t mean it, but sometimes she just comes across as bratty or rude, and well…she needs to know.

For many years, we’ve had do-overs.

Random example. She’d come to the dinner table, take a look at the food, scream, and run away.  I’d bring her back to the table for a do-over, demonstrating the appropriate action.

“Here’s what you could say instead: Mommy, I really don’t like green beans, is it okay if I only eat one bite?”  

Or she’d snap at one of us, meeting any question, (even those she would definitely want to answer “yes” to) with a “NO!”  The mere act of having to answer a question was too much to process.

“Riley, let’s think about how someone might feel, when you scream “no” at them like that? I want you to do it over and say more gently: No thank you.”  

I can’t even begin to tell you how many do-overs we’ve facilitated in her young life. The trick is, to take the emotional charge out of it. It’s like teaching a person a new language. If I were teaching someone English as a second language, I wouldn’t be mad at them for making mistakes, I’d just correct them. Social skills are a language too.

Yesterday was a long day. Lots of errands. The kids were in a loopy zone, not really paying attention to me. Goofing around, not being helpful, egging each other on. It made it extremely difficult for me to focus on getting what we needed at the grocery store. 

Once home, the grocery bags were too heavy for them to carry, but they could have opened the door for me. They could have moved their little behinds up the steps at a quicker pace as I stood there arms loaded behind them. They could have stopped screwing around in the doorway.

I could feel one of the bags starting to rip as I stood there waiting for them,

“Riley and Seth! Do you see my arms are full? Do you understand these groceries are heavy? Will you stop acting so clueless and hustle up those stairs please!”

Later, when I was calmer, I said, “I”m sorry. I know you are good kids. It’s frustrating when I feel like I’m doing all the work, and you aren’t helping. I need you to notice when I am struggling, and open the door for me, and at the very least move out of the way when I’m trying to get up the steps with bags of groceries.”

Riley said, “It’s okay Mom.”

And then, in her sweet voice, with no emotional charge or judgement she said,

“And Mom. Would you mind not calling us “clueless?” It didn’t really hurt my feelings too much, but it kind of made me feel like you don’t think we’re smart.”

I apologized, and though I feel bad for calling them “clueless,” her repsonse felt like such a victory, I can barely even beat myself up.

Posted in Asperger's, autism, Parenting | 9 Comments

Aspie Girls

Aspie Girl, left this comment the other day:

I am an 18 year old with Aspergers. I have been staying at my dad’s house lately, but my mom called today to tell me she still can’t talk about the bike trail I got lost on years and years ago without crying. I spent probably an hour lost before I even realized I was lost, because the trail was so windy, I thought the whole time they were just around a curve. My younger sister wasn’t a great bike rider, and my mom had no chance of finding me, especially since the trail forked and she wasn’t sure if I’d gone the right way. This was before any of us had cell phones, and thankfully my mom was able to get a man to go track me down, on his 23rd speed, or something to that effect. This is one of many, many times I got lost. In fact, my sister told me just the other day not to get lost, to which I responded, “I have my cell phone, how can I get lost.”
At any rate, first of all it is not your fault, and one day she will look back and feel bad for all the gray hairs she gave you. Also, a child locator such as this one
http://www.torislove.net/sitebuildercontent/sitebuilderpictures/child-locator-pink150.jpg
might not be a bad idea, because she probably hates getting lost just as much as you hate when she gets lost, and after all it is pink and teddy bear shaped.

The young women with Asperger’s I have had the privilege of getting to know on-line have my heart. I tell ‘ya. They are true pioneers. They are kind. They leave helpful comments. Some even send e-mails with great suggestions. They are brave. They teach me so much.  Thank you Aspie Girl. Thank you Chloe. Thank you Lydia(check out her insightful and beautifully written new book)! Thank you Aspie from Maine. She has a new book out too! I plan on reading it soon. Thank you for sharing, and making yourselves vulnerable, and for helping me be a better mom. And thank you for being forgiving when I screw up.  

I appreciate you.

Love.

 

*click on photo above for info on the Teddy Bear device suggested by Aspie Girl. It would have helped me the other day when Riley decided to slink away at Macy’s as I paid at the cash register. Found her in the “young miss” dept., checking out accessories.

Posted in Uncategorized | 6 Comments

Got Milk Pants?

Those of you who read Jingle’s page know she was featured in a Fetching Tags contest a while back. Her taglines were “Comfort & Joy” for her collar, and “I’m Here For Riley” for her harness.

Jen, of Fetching Tags generously donates the tags to the dogs featured in her contests. Check out her hysterical commercial below. My favorite is the Chihuahua, or not. I think maybe we all should have a tag line. Why do dogs get all the fun? What would yours be? Mine would be Full Soul Ahead!, of course!

Synopsis for the visually impaired:

Fetching Tags presesnts, Got Milk Pants?

Do you drool?

Picture of a dog, with a big drool. Close up…his tag reads: “Random Acts of Drool.”

“We’ve got your tag.”

Close up of another dog.

“Are you itchy?”

Close up of tag reads: “Scratch my butt.”

“We’ve got your tag.”

Next dog is tiny with big ears pointing straight out. Text reads, “Not a Chihuahua?”

Close up of his tag reads: “I’m not a Chihuahua.”

Or maybe you’re a young bull terrier who wears milk pants? To bottle feed baby goats?

The bull terrier stands on top of a bale of hay, with little pants on, a large bottle strapped to either side. Baby goats run to him and drink. He stands there stocially, blinking his eyes. Doing his job. Little goat tails wagging as they drink.

His tag reads, “The Amazing Milk Bull.”

Text reads: “We’ve got your tag too.”

www.fetchingtags.net

Posted in Uncategorized | 8 Comments

Dance on over…

to Hopeful Parents today, would ‘ya? You can read about my boy.

No, the video has nothing to do with the HP post, but I would be thrilled if it got you groovin’ a bit this fine day. Keb’ Mo’.  Having the kids at camp three hours a day makes me want to dance.

Posted in Uncategorized | 4 Comments

Moving in the Right Direction

Since I talked with the campers last week, Riley has been jumping out of bed, getting dressed (in fly outfits, complete with accessories) with zero prodding, and she’s raring to go each morning. She is having a great time. Being understood is a good thing.

At church yesterday, she went and got herself a reiki treatment. There are practitioners in the back offering rieki during each service. She says she finds it “relaxing.”

During the meditation, they turn out the lights and put on a star machine. It’s a projector, that makes the whole room look twinkley, sometimes you’ll spot a shooting star. The kids LOVE it. The adults do too. Something about the stars floating all over the room provides instant calm. I tend to close my eyes during meditation, but the kids watch the stars, always.

Anyway…after the service Riley decided she wanted to spend all her birthday money, and it would take all her birthday money, to buy a star machine of her own for her room.

Lolly asked about Law of Attraction in the comments yesterday. Off the top of my head, re: Riley’s running away as of late…let me take a look. Her running has been for different reasons each time. At the Botanical Gardens it was an overactive imagination causing her to scare herself. If I think about where my mind went when I couldn’t find her, you can see perhaps my own overactive imagination was going full throttle.  

At the beach, she was worried she wouldn’t fit in. Worried people would think she looked foolish without a bathing suit on. Worried about drawing negative attention to herself. The first thing that comes to mind from my own inner world is the singing. Yesterday our chorus had our listening party, where we played the CD from the recent concert, and as my solo came up, it was just as painful for me to hear it as it had been to stand there and sing it. I actually hid my face. Now…do you think these women gave a rip about my ten second solo? Were they all pointing fingers and whispering how much it sucked? Probably about as much as the people on the beach cared Riley was in shorts and t-shirt, and not a swimsuit. 

In the third scare, Riley ran ahead, because she wanted to be the first one back to the park area where we started. She thought she knew where she was going, she saw a structure that looked similar to where we began and headed that way. She wanted to be proud. Kind of like when Todd and I both leave in separate cars heading to the same place, (maybe we have separate places to go afterward), and I want to get there first. It’s fun. Maybe if I take this side street, I can miss that light and beat him. Riley has some physical challenges, (low tone, depth perception issues) which make it hard for her to feel mastery on a physical level. She was soaring along ahead, running, beating us all. She felt proud. I was just talking with a friend the other night about how one of the challenges of being a stay at home mom, is never quite feeling a sense of competence or mastery. There are no tangible measurements to go by. Especially with a child on the spectrum. No paycheck at the end of the week. No way to win.

My study of LOA tells me contrast creates expansion. There is a momentum that gathers in a difficult time which propels you forward if you do the work of changing your thoughts, and seeing things differently. Breaking patterns isn’t easy. It is work, it is hard. But not more hard than staying miserable.

If I do the work, (and there a many many processes I can use) I’ll be guided where I need to go to find relief. If I keep focusing on what is, I’ll get more of the same. 

So yeah, it’s been a little rough lately. I obviously have some work to do.

Setting intentions. 

Focusing on what I do want.

Appreciating what I have. 

Meditation.

Breathing, staying present, sometimes moment by fearful moment. 

As much as possible, associating with only postitive people, as if my life depends on it. Because it does.

Asking myself, when I get all worked up about something, “Is this worth dying over?”  

Cutting people a break when they “offend” me.  

Contacting the right people, when my ego threatens to take the reigns. You know who you are. Thank you.

So many things I can do to feel better. I’ll start right now.

And tonight, for a while, I’ll cuddle up with Riley under her stars.

Posted in Abraham, Asperger's, law of attraction, Parenting | 12 Comments

One Foot in Front of the Other

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I’d been itchin’ to get out in nature. Every place we’ve lived over the last ten years, I have found it. Hiking trails. Streams. Trees. Oh the trees. I love them so much. I got teary looking at a video of the Redwoods recently. They call me. They do. I’ve never even been to California. Two days after the Botanical Gardens incident, I tried for some trees. We went to a state park we’d never been to before, just me and the kids and it was “Lake Erie beach,” not trails. Noonday sun. Not what I wanted. Still we decided to check it out. Riley’s OCD kicked in, she wasn’t in a bathing suit, everyone else was. It upset her. I thought she was right behind me, as we walk to toward the water. Turned around, she was gone. I hadn’t quite recovered from the previous scare, and I went ape shit when I found her, hiding in some bushes. 

I said, “We’re leaving.”

She fought it.

I dragged her in a headlock to the car and said things I wish I hadn’t. Seth was crying, following behind us. He really wanted to see that beach.

Beside the parking lot, I stopped and sat down on the grass. Put my head on my knees. Dejected. What am I going to do? How am I going to do this? I am so tired. My hormones are out of whack again. Hot flashes round the clock. I have been to four doctors. No sleep in weeks.

Riley sat on the grass too.

Slowly she inched her way toward me, so we were sitting side by side. Six inches apart. Both of us steaming, but she wanted to be near me. I wasn’t ready. Kept my face down. So tired.

Seth came up behind us and silently put a hand on each of our backs. I was still breathing hard. Still angry. He stood there, one little hand on my back, one little hand on Riley’s. I felt the diffusion happening. The love of this little boy calming me down. After several minutes, when he intuitively felt it was okay, he leaned in and hugged both of us, smooshing us together. Family hug.

“Mommy, I’m sorry I hid,” Riley said.

“You have no idea how scary it is for a parent when they feel like their child is missing.”

 “I’m sorry,” she squeaks. Then adds,

“You don’t know what it feels like for me, when everyone else is in a bathing suit, and I’m not.”

No I ‘effing don’t. I want to smack her. Put my head into a wall. I breathe. What would love do?

We went to the van, (where I had the bathing suits, had she given me a chance to check the place out and decide that’s what we would be doing).  

I let them play in the water, while I sat on the beach, feeling battered and bruised.

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Yesterday, I found what I was looking for. We hiked for miles.

 

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I feel like a good mother when I get them out to places like this. Places that calm my own soul.

 

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I spent half my childhood in the woods.

 

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In a short time they were covered head to toe in mud. My camera battery died so I don’t have pics of that.

I wish I could say Riley didn’t run away, but she did. On the way back she did. We let the kids run ahead on the trail, and told them to stop when they got to the road. Oh how glorious to let them have freedom, to run in the forest! They got out of our site. Seth stopped at the road. Riley didn’t. He ran back to tell us. She ran ahead, and took a wrong turn and could have gotten massively lost in the woods if two parents weren’t there to branch out. 

Riley has never been a runner. She never did this at two or three years old. She was always terrified. Always attached at my hip. Is she making up for some missed developmental milestone? I don’t know.

After we found her I just totally checked out. Let Todd deal with the whole thing. Held Seth’s hand and walked ahead.

“I get worried when Riley gets lost,” Seth said.

“It’s not always easy, is it Seth? But you are an awesome brother.”

“Thanks.” 

He never fails to say “thanks.” 

From behind, Riley muttered something about not wanting to be treated like a baby. Not wanting to hold Todd’s hand. Todd said something about not being able to trust her.

One foot on the trail in front of the other, I continued to breathe.

Look at the trees.

Look at the trees.

We will find our balance.

 

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Love.

Posted in Asperger's, family, Parenting | 17 Comments

Walking the Tightrope

Second day of camp, I pick them up and Riley’s been in the office for the last hour. Her eyes are red. She’s spent. She won’t talk about it.

Todd is home, so we drop Seth off, and I take my girl out to lunch. A hip & happening place, appropriate for cool young women. No mac & cheese on the menu. She orders blackened fish. Looks around at the funky decor.

“I was on the slide, and I was scared, and I was trying to get my nerve up to go down, and this boy, he kind of yelled at me.”

She looks down, fiddles with her napkin, adds,

“He didn’t know I have autism.”

Sweet, sweet girl. Giving him the benefit of the doubt. He didn’t know.

So we talk.

We talk about how it usually goes better if people do know. How it works at Girls on the Run, and clay class,etc. How when other kids understand, they usually are really great about it. Really compassionate.

Our food comes.

“I think you should talk to them Mom,”she says, digging in to her fish.   

Trying to contain my enthusiasm,

“Okay. Do you want me to talk to the whole camp, or just your group?”

The whole camp gathers for assembly before they branch off into small groups. They all come together again at recess.

“The whole camp,” she says.

I tell her, “One day you will be able to advocate for yourself. You’ll talk to people and let them know what you want them to know about you,  but for now I am glad to do it. You’ll be really good at it one day.”

She smiles at me, then adds, “Well, one thing is clear. I love blackened fish.”

When we get home I call camp and get their approval for speaking at the morning assembly.

Later that evening, Riley and I review what I will say, and she freaks. She thinks maybe it isn’t such a good idea. I don’t dig my heels in, even though I’ve already talked to the camp administration, even though I think it is vital for her success this summer. Even though God damn it I need this break. Maybe I’ll talk. Maybe I won’t. We’ll see how it goes. I take out some words that might have triggered her.

Next morning, I somehow get her out of bed, and dressed, and ready to go. She sees the little index card I’ve prepared, and doesn’t melt. We don’t mention it.  

We get to camp. She is not running away. She knows I plan on talking and if there is one thing about Riley, it’s she would be so out of there if she really wasn’t okay with this. Todd and I look at each other. He runs his hand down my back.

Walking the tightrope, we go in.

All the campers do a morning song, and a Balinese dance they learned the day before. She’s beaming. Happy. Engaged. Twirling. Smiling. Not worried.

The main counselor introduces me. 

I tell them who I am, and I tell them about Riley. How her senses and nerves are “super duper.” How she feels things extra. How sometimes it can be overwhelming for her. I use the term “autism,” which Riley prefers to Asperger’s. She told me this the day before at lunch.

“Asperger’s has the word “ass” in it, and it sounds kind of foolish, and it is a possessive word, like…I’m not Dr. Asperger’s thing that he owns, you know?”  

So I use the word autism, and I tell the kids about my amazing daughter, with the super duper senses, who sometimes becomes overwhelmed, but you know that’s cool because there are so many really incredible things about Riley. And I name them. And I tell them how lots of really creative people are very sensitive. And isn’t that great at a camp with music and art and drama? And I tell them how inspiring she is. And how her bravery has made me more brave. And how lucky I am to be her mom.

And she sits there in a room full of dozens and dozens of campers, and she clasps her hands together to restrain her arm tic, which only happens when she is really happy. Really stoked. And she looks proud. 

Seth looks proud too.  

And we get out to the car and I breathe, because I went with my instinct, and not her fear.

And she let me.

Posted in Asperger's, autism, disclosure, family, Parenting | 21 Comments

On Camp

“Camp is kind of like school, except they don’t try to kill your creativity.”

                                                           -Riley

Posted in Uncategorized | 19 Comments

Off to Camp

camp day 1

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Three hours a day, for the next four weeks.

Praise God from Whom all blessings flow.

Posted in Uncategorized | 17 Comments

Happy Father’s Day

                                  Hot Toddy                         

 

 

 

 

 

 

 

To my baby daddy.

Thank you.

Love.

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Feeling Lost

Two days ago, we had a couple of hours to kill before the kids’ last dance class of the season. Since dance is close to the Botanical Gardens, and since we have a season pass, we decided to spend some time in the children’s section. It was a beautiful afternoon, and the kids love running around, watering the flowers, etc.

I planted myself on a bench, with my notebooks. The children’s section is enclosed, and the kids know it well. I was by the exit so I felt secure. They would run by here and there, wave, and skitter off.

After about an hour, Seth came running over to me,

“Riley climbed over the fence. She’s not in here anymore.”

Riley was gone.

Seth and I jumped the fence, which took us into the larger property with acres and acres of maze like gardens, which Riley does not know well. A million nooks and crannies. A million hiding spots. A million places to find solitude, or molest a child. She could be anywhere. A very busy city lurked outside, fifteen feet away. She could have left with someone on the street. She could already be in someone’s car.

Last year, I was flipping through the channels and landed on Animal Planet. There was this adorable baby hippo, frolicking in the water. His mama was nearby. The joy of this chubby little hippo drew me in. I smiled. So cute! He pranced and twirled around and around! Just then, an aligator came out of nowhere and dragged him under. His mom was right there. She let her guard down for one second. Let him get just out of her reach. Horrified, I stood there, remote in my hand, watching the mother. Wondering how she felt. How long had she carried that baby? How long had she nursed him?  She stood in the murky water stunned, blinking. Her baby was gone.

Riley was gone, and those hippos were the first thing to pop into my mind.

You idiot! Being so complacent. Sitting on a bench writing in your damn notebooks, not a care in the world.

Seth and I ran around in circles, looking in this section and that. My throat getting tighter and tighter.

“I’m worried,” he said. 

“I’m worried too,” I said, holding his hand, tight. 

I asked a few people, “Have you seen a girl, ten years old, orange shirt?”

They shook their heads, and I hated them for not seeming concerned in the least.

The thought came to me, “If she finds her way back, and we’re not in the children’s garden, she’s going to think we left her, and run off again.”

We headed back, me looking for an employee all the while.

“Do you have cameras?” That was my plan. To ask if the gardens are under surveillance.

My mind switched back and forth from panic to anger. I tried not to cry, for Seth.  

“I swear to God Riley I have not worked so hard, been so devoted to you your whole life for it to go down this way.” Soul to soul, I was FURIOUS.

We got back to the children’s area, and I looked around frantically for an employee and then I saw the orange of Riley’s shirt in the distance. She was there. At this point she’d been gone between ten and fifteen minutes. 

Her thought process: She and Seth had been playing hide & seek. She was pretending he was a “maniac,” and got so into the play, she freaked herself out. Thus terrified, she jumped over the fence, and ran off into the larger gardens. Then she got lost and was very scared. Ten acres of gardens. She went around the whole place, through the Japanese gardens, and ended up at the main entrance.  She must have been running the whole time. Once at the main entrance, she followed the signs back to the Children’s Garden.

“RILEY!” I screamed at her.

“Mommy I’m so sorry! I thought I might never see you again!”

I was so angry, I marched them out to the car, chewing her out the whole time.

In retrospect, I probably should not have done that. I don’t want her afraid of getting in trouble, on top of everything else, should she ever get lost again. 

This was Wednesday.

Thursday, I went through the motions. I felt numb. I felt irritated. A solid wall up between me and my family. I couldn’t stand Riley.  Todd tried to rub my shoulder and I could not tolerate his touch.  We fought. I told him I didn’t know how much longer I could take this. Something has to give.

I went upstairs to sleep on the twin bed in my office. No sleep.

2AM. I crawled into his bed. Head on his chest, I whispered about the baby hippo. I fell apart.

He took me by the shoulders, and put me back together. Told  me I am a good mother. Promised me. Told me he sees it every day. Told me anyone who thinks otherwise is crazy. Told me I did nothing wrong. It was okay to let her play. She is safe, she is safe, she is safe.

The inconsistency with Riley’s kind of autism is so cruel. One day she’s a ten year old. One day a four year old. She does not want to be babied (asked me specifically to sit on the bench and let them be), but can’t be trusted not to freak out and scale a fence and get lost. 

It is maddening. It would be easier if I knew what to expect. It’s always changing. Lately she’s being very impulsive. Doing things she never did at three and four years old. She would NEVER have climbed a fence and gotten so far away from me before. She’s also being defiant. She actually hit me (has never hit anyone in her life) twice this week.

If I could just accept, she has autism, and all things are expected, it might be easier. But she goes in these spurts where she’s doing so well, and I let my guard down and then…suddenly BAM!   

I don’t know.  

I’ve gotta sort it all out on a metaphysical level, where it will make some sense for me. There is no safety. We’re all safe. We all die. We’re all eternal. All things working in Divine order. Blah,blah,blah.

Tell that to the mama hippo.

For now I will hang onto knowing I will eventually see things differently. I’m never lost for long.

P.S. To anyone who accuses us of “hovering” too much, consider this post a  personal invitation to entertain the possibility you might be wrong. 

P.S.S. We did not have Jingle with us, because the kids wanted to run around, and she would have had to sit beside me. She would have wanted to run around with them, and would have cried and been annoying the whole time.

Posted in Asperger's, marriage, Parenting | 29 Comments

The Morning Song, Rickie Byars-Beckwith

One of the most poignant moments during the recent Great Lakes Unity Music Conference was when Rickie Byars-Beckwith asked if anyone had recently experienced the transition of a loved one. Two women stepped forward, both from our local Unity congregation. Both had experienced painful losses. Rickie had us form a circle around the two. She stepped into the center with them, and rested a hand on each of their shoulders. We huddled around raising our hands toward them and began to sing Rickie’s gorgeous Morning Song.

It is call and response, we’d only practiced it a couple of times, not knowing what was to come of it during this workshop.

So imagine you have experienced a great loss, and sixty people form a loving cocoon around you, and Rickie Byars-Beckwith’s soulful voice leads them in singing,

The spirit of God is all that I am now.

Don’t worry about me, now I am alright.

That body I had, let it fade into the light.

I am more than flesh, I am more than time.

We are more than flesh, we are more than time.

No I could not do, what I could not see.

Lift up my name, for what I tried to be.

Don’t worry about me, now I am alright.

That worry you have, let it fade into the light.

The spirit of God is all that I am now.

The spirit of God is all that we are now.

If I could not do what I could not see,

lift up my name for what I tried to be.

And don’t you worry ’bout me, now I am alright.

That body I had let it fade into the light

The spirit of God is all that I am now 

and so on…  

Tears streamed down the faces of the two women in the center, one repeated over and over, “Thank You, Thank You, Thank You,” as we sang, her hands raised high, her body visibly releasing so much grief.  She’d had significant losses, including that of her son in the last year.  

The other woman’s face beamed as if the love was just being poured in through the top of her head. She stood there, eyes closed, tears coming down, positively lit up.

I came across the video below in my Internet travels this morning. Rickie Byars- Beckwith and Tim McAffee Lewis will be at The Omega Institute in July.  If you feeled called to go, do. It is a life changing experience.

~

Rickie Byars Beckwith “Morning Chant” from Omega Institute on Vimeo.

Posted in singing, spirituality, Uncategorized, Unity church | 9 Comments

Fireflies

Somewhere in the darkness

there’s a glowing

that sounds buzzing to your ear

It’s a friendly little fly that lights up

its rear

It’s a very friendly firefly

that shines up the night

And when they go

they still light up the night

Da da dum

Da da dum

Da Da duhh

-Seth O’Neil’s first crack at poetry/song writing, inspired by a night walk this evening. The tune is a bit of a waltz.

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From Emmanuel’s Book

Each of you is a portion of God saying, “I will create.”

It is quite impossible to recall

at what point in your existence

you, as part of God,

decided to become human.

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Summer

So far, summer has been fantastic with a capital F! Hee-hee.

It has been so nice to have some freedom. No schedule to adhere to (at least not until camp starts).

I’ve given myself a pool pass as in, I’m not taking these kids to the pool. It is hell for me and frankly, I’m sick of it. Unless two adults can come, it ain’t gonna happen. Period. No Riley can’t swim yet. Yes, Seth is just starting to be able to, and yes, I know it is a safety issue, but my mental health is an even bigger safety issue. I’m too happy right now to discuss it, but let’s just say, the pool gives clay class a run for its money.

So…we’ve been working in the kitchen. Here they are peeling carrots for yesterday’s creamy carrot ginger soup.

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And today we went to the library, which is nothing new, but what was new, is they got to stay as long as they wanted. No rushing. No, hurry up and get what you want because we have to go, go, go. I planted myself at a table in the children’s section where I had full view of the exit, and told them “Be off, take as much time as you want. We can stay for hours!” We’d just had lunch, so we were good for a while.

After years and years of having to follow Riley around navigating every possible social situation, waiting for the screams, I was the mom who got to just be in the vicinity, in ear shot for sure, but not hovering. Not in eye shot. It was bliss. One of the things about having a kid on the spectrum is you take nothing for granted. Every gain, every uneventful moment is a miracle.

I got a lot done at my little table. I’m singing a duet with Kathy at church on Sunday and I was able to go over the music. I did some writing that needed to be done for a project I’m working on. My little ducklings checked in often enough, piling the table with things they wanted to borrow. We filled two bags.

Un-rushed kids are happy kids.

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 Here they are looking through Shel Silverstein’s A Light in the Attic.

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 They couldn’t wait to show me this illustration:

 

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It reminded them of a certain parent they know. The one who is on day two of a seven day stretch. The one they won’t be seeing much of this week.

The one who is never far from their hearts.

 

todd nails

 

 

 

 

 

 

 

 

 

 

 

 

 

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Presently they are watching The Princess and the Frog (borrowed from the library). Seth is dancing to the New Orleans sound. Riley is sprawled on the couch.

Later we’ll take the Jing for a walk.

Did I mention I slept ’til nine today?

Fantastic with a capital F.

 

The Nailbiter

Some people manicure their nails,

Some people trim them neatly,

Some people keep them filed down,

I bite ’em off completely.

Yes, it’s a nasty habit,but

Before you start to scold,

Remember, I have never ever

Scratched a single soul.

 

-Shel Silverstein

Posted in Asperger's, family, marriage, Parenting | 15 Comments

We Want the Funk

Riley got two different Glee CD’s for her birthday. We were in the car a lot today and it was the first time I’d listened to them. Some of the lyrics are a bit “mature” for my sweet little petunia, and I wasn’t sure about the appropriateness. Then again, it ain’t rap with the nasty explicit language and misogynist message. It could be worse, and you can’t keep them from everything. I pondered these questions as we drove along.

Then a remake of Olivia Newton John’s Let’s Get Physical came on. Holy sexual innuendo! But you know what? As a kid when that song came out, I totally thought it was about aerobics. I actually thought it my whole life until today when I listened to the words. So…I’m guessing my girl will be okay. She’ll only hear what she’s ready to hear and the rest will go over her head.

I was so happy to hear the George Clinton remake, We Want the Funk…and we went cruising down the road, “turnin’ this mother out!”

Yeah, baby…that was us in the maroon minivan. Check it.

You’ve got a real type of thing going down, gettin’ down
There’s a whole lot of rhythm going round

I know. I need help. 

But I really do want the funk.  

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Riley’s Party at Cleveland’s Botanical Gardens

Today was Riley’s 10th birthday celebration and we did a low key party, at The Cleveland Botanical Gardens.

We invited only as many as our two cars could carry, and a couple couldn’t make it, so it was just five besides Riley and Seth.

They ate cake (lemon/mango sorbet) by the pond.

They spotted butterflies.

  

Homemade cards and perfect presents.

Riley has been to the gardens so many times, she feels like she owns the place. She’s good and comfortable there. No surprises.

It looked like it might rain today, but the weather held out.

It was perfect.

With low key celebrations, you get to really enjoy your friends. You get to talk as you eat your cake, and go at a leisurely pace.  

I love how our daughter has taught us bigger and louder isn’t better.

Sometimes small things, are the sweetest of all.

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