Specific Carb Diet….Again

So, we tried IVIG for six months, and while it is doing a bit of good in between infusions, by about the third week Seth’s tics start happening again. His strep titers are still quite high. It is more of a band-aid and not getting to the bottom of Seth’s PANDAS problem.

When we first moved to Cleveland, we were on the Specific Carb Diet, (and had been on it for about 18 months, and wheat free before that) to help Riley with her digestive issues and hopefully her anxiety. It didn’t do much for her anxiety, but we were all so much healthier than we are right now. At the risk of TMI, I have two children who regularly clog the toilet with the size of their “deposits.” It isn’t normal to look at a little 55 pound kid, and think of him shitting a brick. And yet, he does. We plunge. We plunge much.

Riley’s intestines have always been off. Constipation is only kept in check with high doses of daily Magnesium. One missed dose and we have trouble.

We moved to Cleveland five years ago because the school system in Virginia SUCKED as far as autism understanding. Moving was stressful. The school we moved for didn’t work out and we pulled Riley out of it after two weeks when I picked her up to find every blood vessel in her eyes broken from crying so long and hard. We quickly found another school that seemed great, rushed to buy a house to live in the district, and the teacher Riley would have had, blew an abdominal aneurysm first week. During all this, an M.D. we began working with here convinced me that we didn’t really need the diet, she’d done some work with us to eliminate allergies, and those foods weren’t “allergies” for us, yada yada. I knew better, but I just wanted to be normal for a minute. I wanted to NOT have to make every morsel my family ate from scratch. Life was so stressful! We weren’t seeing many behavioral gains in Riley, which was really the big thing we were looking for. I didn’t have a freaking dishwasher. Or AC. And the oven has to be on all the time if you are eating this way. It was all too much. My arm did not need any twisting to toss it all out the window.

We kept up with eating healthier than probably 95% of America, but wheat and sugar quickly became addictions for all of us. I went into early menopause at 38 and quickly put on 15 pounds. Todd probably gained twenty. And Seth. Seth’s health issues began to show themselves in earnest.

So, we’re going back to this way of eating. I’ve been busy, clearing out my kitchen, starting over, researching recipes, cooking, cooking, cooking. Buying more chicken (and even some meat) than this former vegetarian can wrap her brain around. I’m making yogurt. Grinding nuts into flour.

I know it will become easier when I get into a groove. The hardest part is always social. So much revolves around food. Some people don’t understand. I don’t miss the raised eyebrows. The “is it a true allergy?” questions. The “can’t he have just one?” It’s hard enough to do the work of the diet, but to have to deal with other peoples’ skepticism….it just really blows.

Luckily I know other mothers here whose kids have food issues as well. It makes the kids feel less freaky.

Todd’s been hinting for a couple of years that he would like to go back to eating this way because he felt great on the SCD. He didn’t push though because he knows 90% of the work falls on me. Having spousal support for something like this is key. Knowing he’ll worship me keeps me focused. LOL.

We’ve talked with other families that have had success eliminating tics by changing diet. We want to leave no stone unturned. If this helps Seth, it will be worth it. If you want to know more about the diet or how a leaky gut can cause neuro symptoms and other health issues, there is a lot of free info on line. Start here for links and recipes. Or look at the GAPS diet, which is similar.

I’ll try not to be too self-righteous about it.

Pinky swear.

We’re going in.

Saying Yes

Hello Asperger’s,

Thank you for allowing me to walk with a girl who is so sweet, she absolutely cannot see bad in anyone. Even people who have been mean to her. Thank you for allowing me to bear witness to this beautiful heart of hers. A girl who after being excluded wonders what she can do to help the person who did it. Because obviously they are in so much pain.

Dear PANDAS,

Thank you for allowing me precious time with my boy, to know him more, and to ease my own heart, making up for time that wasn’t spent “on him” when he was tiny. Thank you for providing me more opportunities to be kind when he is scared. Patient when he takes a long time to get his words out, accepting and supportive when he tics.

Thank both of you, Asperger’s, PANDAS, for all the learning. All the heart opening. All the extra love you have ignited in me and so many others.

I appreciate you.

Love,

MO’N

Gentle, gentle

So the other day when Seth had a bad reaction to his IVIG infusion, Todd slipped out during the ordeal and took Riley to the orthodontist before they closed for the weekend. It was imperative they correct a couple of stray wires that had come loose and were poking Riley in the cheek like needles.

She’d had the braces less than 24 hours and her mouth was sore, not just from the poking wires, but from the whole thing.

She sat bravely in the chair as the professional fiddled with her braces, and according to HT, at one point Riley suddenly stopped her and said sweetly but with conviction,

“Excuse me, could you be a little more gentle with me please?”

How many adults would be courageous enough and/or feel justified to stand up for themselves in this way? She didn’t fly off the handle. She didn’t heap any judgement on it. She didn’t melt down. She just asked for what she needed and got it.

What would it be like if we routinely asked others to be more gentle with us? What if, the next time we were about to make a self-deprecating remark we stopped and asked our inner critic, “Excuse me, could you be a little more gentle with me please?”

Braces

Riley got braces today.

Her first dental appointment when she was a little girl was a nightmare for her and one of the worst experiences of my parenting journey thus far. As she got older it was evident she had a major need for orthodontia but I doubted she’d ever be able to tolerate it.

Today, she was so excited. She could not wait.

To her, braces mean being a tween. Being cool. Being like everyone else.

After her appointment, we went to the mall (and we never go to malls, I hate them) because she wanted to. She wanted to celebrate. We got smoothies and then walked around.

She still gets panicky and reaches for my hand stepping onto escalators, unable to perceive depth well. She’ll forget to let go when we get off the escalator and continue holding my hand as we walk through the mall, (not too cool for that at eleven years old). Hand in hand, this is when I am reminded how much she still reacts internally to external stimuli. She may not scream, but holding her hand, I feel her tension. When we walk by something extra noisy or a scary poster, or a perfume salesperson getting too close in our faces, she flinches. Her hand grips mine extra hard.

She still has sensory issues, but she gets through it. Brave, brave girl. She has worked so hard to be where she is now.

Our orthodontist has been building a relationship with her for years, preparing her for this day. Having us come in every six months, free of charge, just to peek in her mouth. Not even doing anything, just getting her used to him. Getting her used to the idea. Selling her on the coolness of braces.

Some days I am overcome by the kindness of people.

In the chair today, Riley asked intelligent questions. She dealt with all the sensory components of getting her braces on. She beamed when they gave her a mirror to check herself out in. She was pleased with her choice of neon green and purple bands.

She’s happy. She’s a happy girl.

I have this feeling, she’s going to be okay.

And I will never take it for granted.

Meditation Before Glee

Busy day, and now in the first lull, the the kids want to watch Glee, which means I have to sit there with them because there are parts I must forward through. Not really into it but it means the world to them. I strike a deal.

“I’ll watch Glee with you, but first we do a meditation.”

Riley groans. Seth shrugs compliance. I bring my computer into the living room and sit on the floor, Riley sits next to me, Seth on the pink couch.

I bring up iTunes and choose a Martha Beck mp3 on anxiety. Riley and I snuggle up on a pillow on the floor, she rests her head in my arm, then moves it around in non-verbal insistence I stroke her hair. She’s pushy like that. Sometimes it gets on my nerves. The mp3 starts and it is nice and relaxing, and soon Seth is tucked in my other arm, and Yippee is on my chest, and we’re all in a heap on the floor, and yes, I’m stroking her hair.

And I forget being annoyed about it, because how lucky am I? To have these kids? Ones who at 9 and 11 will indulge their mother and get on the floor and meditate with her and how awesome it is that we came from a place of almost constant anxiety and walking on egg shells for years and now we pretty much just delight in each other.

Soon we’re all breathing deep and slow, and I’m no longer “the mother” but just with them, and we are all in a place of stillness, no thought, no time, together.

Twenty minutes later, we’re watching Glee, and the day marches on.

But the meditation, it’s there. It’s in us.

The Great Pumpkin had a good run. Well played, Seth O’Neil

When the kids were little they had all kinds of dietary restrictions and candy was a big no. Wanting them to still have the joy of trick-or-treating, we made up a story (thank you Charles Schultz) about The Great Pumpkin, a benevolent character, who loved kids so much, and cared about their health so much, that children had the option of leaving their candy out for him on Halloween night and he would replace it with toys.

They loved it until last year, when Riley took me aside and said, “Mom, I don’t want to believe in The Great Pumpkin anymore. My friends look at me funny when I mention it.”

It was a poignant moment. She was growing up. She noticed friends looking at her funny and decided on her own what to believe. I hugged her and explained the ruse. How we wanted her and Seth to have all the joy of Halloween and not feel deprived. She understood. She agreed to let Seth believe as long as he would.

So I wasn’t sure about Seth this year. He’s nine. Did he still believe? Had his sister spilled the beans? There was no mention of The Great Pumpkin leading up to Halloween, no mention at all on the day. I was suspicious. And then I forgot with the business of getting them dressed up and out the door. I also forgot to buy toys to replace the candy if Seth did still believe. I figured there was about a 2% chance he was still in on it. They went out trick-or-treating and had a ball with their neighborhood friends.

After tucking them in last night, I suddenly remembered, and went into Riley’s room and whispered, “Riley, does Seth still believe in The Great Pumpkin?” She’d be the one who knew.

She rolled over, looked and me and said, “Yes, I think so. I think he does.”

Crap.

I went into Seth’s room and said casually, “Seth, do you want me to leave your candy out tonight?”

He said, “Why?”

A long silence filled the air. I felt like he knew, but he was gonna make me say it anyway.

“For The Great Pumpkin,” I muttered.

He paused a moment, weighing his response. I could almost hear his thoughts telepathically.

If I say yes, I get a toy. 

If I say no, she’s not going to let me eat all that candy anyway.

“Um…okay,” he finally responded.

On the 2% chance he still believed, guess who was running to Target at twenty minutes to ten last night like a bat out of hell?

So, this morning, they came downstairs, candy was gone. Toys were there. One for Riley. One for Seth. Riley sucked her in breath and said, “THANKS MOM!”

Seth played cool as a cucumber, but the jig was definitely up.

“That Great Pumpkin, sure must be nice!” I said.

He smirked.

“That Great Pumpkin must really, really love you guys to care so much about your health!”

Big old grin on my boy’s face.

“And I bet she’s beautiful,” I added wistfully.

Seth turned and looked directly at me and smiled.

He knew. 100%.

And that’s the end of that.

Glee – You’re on Notice

Shuffling out of my bedroom still half asleep, I’m greeted by my bright-eyed tween with her usual morning after questions.

“Did you watch Glee?”

It’s our Tuesday night assignment. She can’t watch Glee ’til we’ve watched Glee and screened it. And she might explode if she doesn’t get to watch it, today. She’s as “hopelessly devoted” to Glee as I was to Grease when I was her age. Only more so.

I hug her tight and she stands on her tip-toes, arms around my waist. The tip-toes are to make herself taller than me. It’s new, and she can’t stop doing it. We look at each other eye to eye.

“We need to talk about Glee.”

“Was it appropriate?” She asks, hopefully.

“Well, most of it was okay, but there was a part that really upset me.”

Her face drops. I call her father and brother into the room. Todd and I talked for hours the night before about how to address this and I can’t say we’ve really figured it out.

“Riley, you know how sometimes kids with Asperger’s, when they are having a hard time, they can be misunderstood and people think they are brats?”

She nods.

“I mean, even Dad and I didn’t get it at first, right? When you were little?”

She waits for more.

“Well last night on Glee, there was this new character, who behaved really badly, and said because she had self-diagnosed Asperger’s, she was entitled to act like a brat.”

“What did she do?”

“She insulted the Glee club, and even though she wasn’t talented, she felt she should be the star of the show, and she was really mean and rude.”

Todd adds, “She might not have really had Asperger’s, we’re not sure, but was using the diagnosis, as an excuse for her bad behavior.”

Riley looks back and forth to each of us.

I continue, “And we really were mad about it, because it’s not fair to stereotype kids with Asperger’s like that. You have Asperger’s and you would never act that way. You are never cruel. You don’t think the world owes you favors. That’s one of the reasons I love writing about you, because it gives people an understanding of how sweet kids with Asperger’s are. You’re a great ambassador for Asperger’s.”

Neither child knows what an ambassador is, so we explain the concept, while inwardly I question whether that’s a bit much to put on a child. Will I ever feel like I’m not winging the parenting thing? Ugh!

Seth nods along, affirming his sister’s awesome ambassador worthiness.

Riley listens intently, then says, “Maybe the writers didn’t mean to depict Asperger’s in a bad way.”

That’s my kind hearted girl, always giving people the benefit of the doubt.

Todd says, “Maybe not. And maybe they’ll take the story line further and explain more about what Asperger’s really is in future episodes. We don’t know.”

Her face suddenly twists up with worry.

“Can we just assume they aren’t talking about me?” she asks, her voice rising a couple of octaves.

The second agreement from The Four Agreements pops into my mind. Don’t take anything personally. Could I just assume they aren’t talking about Riley? Could it really be that easy?

Somehow I feel I have to protect her from what the world thinks of Asperger’s. She’s not rude. She’s not lacking empathy. She’s not robotic. I hate those stereotypes. And I’m not sure Riley really understands the repercussions for kids like her if negative stereotypes about Asperger’s are propagated unchecked in our society.

But then again, I know how pushing against something makes it bigger. Why not just let Riley do her thing, and continue to touch the people she touches, and change perceptions in her own little microcosm, one heart at a time?

Finally she looks at me with tears in her eyes and squeaks out her worst fear about the whole thing,

“Are you not going to let me watch it?”

This is where I want to put the powers that be at Glee on notice. Seriously. Ryan Murphy? Brad Falchuk? Ian Brennan? Dante Diloreto? (My daughter told me your names. She has everything about the show memorized). It’s really unfair to make people who are so vulnerable the butt of your humor. What’s next, kicking puppies? You better redeem yourselves or I’m leaving your viewership and taking a whole lot of people with me. The autism community is a big one, and it’s a divided one, but I think we can all agree, don’t mess with our kids. And BTW? We have lots of friends. 

I look at Riley and tell her, “We’ll keep watching it, and we’ll keep talking, okay?”

She sighs big. Relief all over her face.

She loves you Glee.

Keep that in mind.

Big Fun and Mac’s Backs After Tommy’s

We went to the Coventry area for dinner tonight. It was too hot to cook. Attached to the wonderful Tommy’s restaurant is the infamous Mac’s Backs. A local independent. A Cleveland establishment. I brought some of my bumper stickers and put them on the bulletin board, but when it came to talking to Suzanne, I totally chickened out. I can promote the daylights out of anyone else’s work, but for some reason, my own? Not so much.

It’s not that I don’t believe in the book. I do. I know it has an audience. Over and over I am hearing from readers, “I couldn’t put it down.” People are reading it in one or two days. I’m not saying Daughter of the Drunk at the Bar is a masterpiece, but’s it’s my own, and people (even those I don’t know) are e-mailing me unsolicited and saying good things. 

Back to Mac’s Backs. We walked out. I had lots of excuses. I needed to put more money in the parking meter. The kids were suddenly thirsty. So many reasons why I couldn’t talk to Suzanne. Not then. Maybe another day, when the kids aren’t with me. It’s too hard. I don’t want to bother her. Gotta run. 

So anyway…right near Mac’s Backs is a store called Big Fun. Seth’s favorite. A novelty store full of crazy toys, nostalgic things, gross things, FUN things. Some freaky things. Packed to the gills with “Big Fun.” Even the ceilings are painted in graffiti. Riley has never gone in. It has always been too, too much for her heightened sensory system. Merely peeping in the window has frightened her.  

Tonight as we were walking by I asked if she would like to go in. Predictably, she said no. We stood in front. Little brother perfectly willing not to push for it, not to upset her, totally wanting to go in. I said, “Riley, I think you are at the point where you could do this now. You are handling things so much better. You are really growing up.”

She is.

Seth looked hopeful but tried to act casual. He shrugged, hands in pockets, fedora on his head.

“I don’t know,” she said.

Gently I said, “Riley, I think your fear of this is worse than the actual reality of what’s inside. You can do this.”

We stood there, the three of us taking deep breaths, getting up her nerve. She clutched my hand tightly and at last, we went through the door. Once in, she was cautious for about sixty seconds, repeating to herself, “I can do this. I can do this.” Then, she wound up loving it. So many fascinating trinkets to look at. So many whoopie cushions.

Watching my daughter explore the store, I admired her so much. She is so brave. I am such a chicken.

The kids had their big fun for a half hour. Stepping out of the store, it was my turn. If she could be that brave, I could too. Back to Mac’s Backs.

Suzanne was there, warm and lovely. Supportive. She bought a copy of Daughter of the Drunk at the Bar (which I had in my bag) and said she’d order more to sell in the store. Can you hear me exhale?

The Universe wants to support me, if only I’m brave enough to ask.

I can do this.

I can do this.

I learned it from my girl.

Her Mother’s Eyes


Riley steps out of the shower and I put the towel around her, draping it over the top of her head so just her face peeks out. I pat her dry a bit then hold her by the shoulders and stare into her eyes.

Somehow in this mundane moment, I am overcome. I love her so much. I remember her little face peeking out of the towel when she was a baby. Those same huge, innocent eyes. She smiles at me.

“Riley…when you look into my eyes, what do you see?”

I want her to remember it. This feeling of her mom looking into her eyes and loving her. I want it in her bones. In every cell of her body. She’s growing up on me. I want her to remember this, if nothing else from her childhood. Her mother’s eyes full of love for her.

She looks at me thoughtfully, and replies, “sockets.”

Pass it through the window…

We’ve just discovered our deck. This sounds ridiculous, we’ve lived here for over three years, and have hardly ever spent time on our deck. For one thing, it was ugly. But this summer, Todd threw a couple coats of sealer on it, and it looks so much better. And then we got new windows.

You see, there is not a door which leads directly to our deck. You have to go out a side door, and around, and well….apparently that was just too much energy for me to expend before. Sad, yes. But with new windows, I can easily open the kitchen window (couldn’t do that before), creating a pass through, where I can hand cups and plates and we are enjoying eating outside on these beautiful end of summer evenings.

One night recently, I’d poured glasses of water, and asked Riley to help me get them outside before dinner. I said, “You can pass it through the window.” She smiled, and then started going out the side door with two glasses.

“No, Riley…you can pass them through the window.”

She paused and headed toward the door.

“Riley…look, we can put it through the window. Dad’s standing there waiting for you to hand the glasses to him.”

“Oh! I thought it was just an expression,” she said.

And it occurred to me, if you don’t understand expressions, anything could be an expression.

And it occurred to me just how brave my little girl is, as she navigates this confusing world.

Executive Function


I have several phone calls to make. I have laundry to do. I am fixing Riley’s supplements. Where was I? Oh…I was going to call Lidi to see how she’s holding up since her dog died.

Watching me spin my wheels, trying to decide what to do first, Riley says, “Mom, I think you have a little autism.”

Curious about where she is going with this, I say casually, “You do? Why?”

“Well…because you had me, and I have autism, and you are having executive function issues.”

Here is where I did the blank mommy, “You don’t say?” kind of face. Give nothing away. Do not laugh. Do not smirk. Oh my God she’s so cute. Do not laugh.

We discussed executive function issues the other day, after she spilled a whole glass of water on the table, where my laptop sat, but proceeded to sit down and eat her snack, rather than clean it up, because she was hungry. Made sense to her. Todd, who has worked in hospitals for the last 20 years commented that day, “It’s like she has no triage ability.” After it happened, I explained to her how she is not a bad person for doing this, but it is something we need to work on, because despite all her awesomeness, she does have challenges in executive function. We focus on her gifts, yes, but we also need to keep bringing up the rear, you know?

She adds, “Plus, we kind of look alike.”

Smiling at her I say, “Riley, if I am like you at all then I’m glad because you are awesome.”

She flashes her sweet smile.

Truly…how did I get such an incredible kid? I adore her. I want ten more just like her. Okay…I admit, that last sentence was a bit overboard, even for me.

But every day, I just enjoy her more. 

Now, where was I?

The Halloween Catalog

Every year a Halloween Costume catalog arrives in the mail. Riley desperately wants to flip through it. She wants to see the girlie girl costumes. She wants to see the animal costumes. She LOVES Halloween. The catalog calls to her. But there are always the gruesome costumes. And she could never do it. She’d hold the catalog in her hands, trembling, until I went through and ripped out the offending pages. Then, all would be well with the world. She’d take the catalog and pour over it for days, and weeks.

Well…the catalog came the other day. She walked over to me as I was doing the dishes and said, “Mom. Will you go through this for me and pull out the scary pages?”

Drying off my hands, I took the catalog, then reconsidering, handed it back to her, “No.”

She was shocked. Mean, mean, meanest mommy.

“Riley, I think you are old enough, and strong enough to deal with this.” I fished around on the counter and came up with a black Sharpie. “Take this, and any costume that is gross or scary or ugly, I want you to black it out. Take your power back. You don’t need to be afraid of a silly Halloween catalog anymore.”

She looked at me wide eyed, then ever so slowly the corners of her mouth turned up in a smile. She was in!

She attacked the catalog with a vengeance while Seth and I cheered her on. Her brother has a deep fear of one costume in particular (which I am not allowed to mention), and she took special pleasure in blacking that one out. She’s never been able to play the role of protective big sister much due to her own intense fears, but the times they are a changing. 

She actually said, “A little blood won’t hurt us” as she scribbled.

And when she was done she said, “I can’t believe I did it!”

Believe it, baby. Believe it.

There is nothing you can’t do.

 

Theater Arts Camp – A Success!

Today was the last day of theater arts camp. Riley was the only kid with special needs and she was with an aide she didn’t know previously and kept the fact she had an aide undercover. Her aide was young, and everyone thought she was just another conselor. Riley’s super duper memory and ability to easily learn lines is no doubt what scored her the leading role. The play was an original story with a hodge-podge of familiar songs and show tunes. Riley played “the teacher.”

Eariler in the week it was touch and go. She had an issue with her microphone, and almost couldn’t get past it, but she was able to articulate her feelings and we came up with a solution, and she got through it.

She had a beautiful solo in the beginning, and here she is in one of the numbers which she performed with the camp counselors. This one blew me away, because just the noise at the beginning of the scene would have derailed her not so long ago.

Yes. I cried.

And Seth. My baby. Look at him attack the mic and do Michael proud. I love this boy. I love everything about him. I love him and I like him, and I think he’s cool.

And how cute were the tiny kids? Impossibly cute. Our friend Jancy came to cheer the kids on. It was so nice of her to want to be there. The kids had only seven days to actually rehearse.

The Cleveland Music School Settlement is a place which truly supports those with special needs. It is an organization with a heart. A lot of people jumped through a lot of hoops to make this camp happen for Riley. They were all rooting for her to even get into this session, and then…she blows us out of the water by auditioning for the lead.

Riley has no concept of how amazing she is. She doesn’t know she’s breaking down barriers. She doesn’t know she’s a freaking miracle. She’s just plugging along, being Riley. Doing her thing. Full of sweetness and love.

I am so blessed to be her mom, to have front row seats to watch her fly.

The Teacher

At the end of four weeks of music camp, staff approached us and asked if we might consider sending the kids to two more weeks of theater arts camp. Music camp is an inclusion camp for typicals, and kids with special needs. There are aides assigned to the kids who need them. Riley’s former aide from public school has accompanied her there for three summers now.

Theater arts camp is not an inclusion camp. They don’t generally take campers with special needs. We decided if all the pieces fell into place, they found an aide (Riley’s aide had plane tickets and was heading west for a family visit), we found the money, if Riley and Seth actually wanted to do it….if it was all meant to be, it would happen.

It happened.

Today was their third day of theater arts camp. Riley is paired with an aide she does not know. An 18 year old who will be off to college soon. All the better since she blends right in as a counselor and Riley no longer wants to be identified as the kid with the aide.  As far as the other campers know, this girl is just staff.

So yesterday, when I picked the kids up, one of the main directors of this session signaled to me. She wanted to talk. In private.

My stomach sank. Maybe Riley had a hard time. Maybe being with an aide she didn’t know had thrown her off. Maybe she’s worn out from the four weeks of camp before this. Walking in the door, I braced myself. Four staff members were there waiting to speak with me.

Gulp.

Turns out they wanted to cast Riley in the lead role for the final production. They wanted my opinion to see if I thought she could handle it. It’s a big role with solos and tons of dialogue.

There had not been a problem. Our girl is kicking butt!

So after talking with Riley some last night to feel her out, and determining she’d be okay with it, and after talking with the staff to make sure they have an understudy prepared, just in case….Ms. Riley O’Neil was announced as the lead role at camp today.

Her part in this original production?

“The teacher.”

Renaissance: : “a movement or period of vigorous artistic and intellectual activity.” -Webster’s

My computer is acting wonky, and I’m not even sure if this will post, so I’m keeping this short and sweet. The last day of camp the kids put on a Renaissance performance. Riley was a lead. Seth had lines too. It was cute. She’s been invited back for two more weeks of theater arts camp. This one not an inclusion camp. She’ll be the only kid with special needs and the first one ever for that block of camp. She has no idea how cool she is.

I panicked about Renaissance costumes and then remembered Janet and Brian’s wedding.

I did some cutting and pinning, and voila! Did I mention Riley was the lead girl? The Queen? She was.

Anyway…gotta go fix computer issues. Hope everyone is having a great weekend!

Lovingly yours,

MO’N

Proud Little Mermaid

If any of you read my contribution to the Special Gifts anthology, you would know about our early experiences with swimming pools and Riley. The sensory bombardment of a locker room, a hot day, bright sun reflecting off the water, people splashing, the strong smell of chlorine, kids squealing, cold water, adult chatter. It was pure hell for Riley as an extremely sensory defensive toddler.

Throw a new baby into the mix, and us living in an area with no family what-so-ever for support and swimming was put on a back burner. Important, yes….but so many other things had to come first.

She’s taken private one-on-one lessons but it was a delicate thing. With her intense anxiety, if you pushed her too hard, you would never get her in the pool again. So, she’s eleven and still can’t swim.

We went for her second lesson this week with a new teacher. It is a different way to learn.

It almost reminds me of the floor time we did when she was little. The teacher rocks her like a little baby in the water. Riley looks completely blissed out. The point is to get her to enjoy and be soothed by the water. When you are tense, you can’t move your body effectively to swim. So by relaxing her, I mean REALLY relaxing…I swear her brain is being re-patterend.

As Riley walked over to the pool to meet her teacher Monday, Seth and I joined hands, closed our eyes and I led him on a gorgeous meditation, where we saw him and his sister on vacation somewhere beautiful, swimming freely, enjoying the water. We imagined Riley underwater like a little mermaid….pure joy.

After that we read a little from a Cricket Magazine someone had left on the table. The next time I looked up, I saw my daughter go underwater up to her goggles. Mouth and nose submerged.

WHAT?

I held my breath.

The next time I looked up, I saw my daughter go completely under water, remain there for a second, then come up smiling.

WHAT?

And then she did it again. And again. And again.

And I cried.

This was her second lesson. And no, she can’t swim yet. But she has overcome the most monumental hurdle, and it won’t be long.

Great, now I’m crying again.

Talk amongst yourselves.

 

What’s the Best Case Scenario?

Tonight I was feeling antsy. Not quite in a funk, but teetering, despite my best efforts to stay positive. I needed to get outside. We went to a park and as the sun went down we watched herons and the kids did some swinging and some climbing. It was just the thing. Fresh air. Trees, glorious trees. Cleveland is good for that. It is so very green this time of year.

Riley knocked our socks off, climbing what used to be the bane of my existence. She went higher tonight than she’d ever climbed before, and while there were kids half her age who made it to the very top, she was proud of herself, and not concerned with them. Not a tear was shed, though I almost lost a few happy ones. I was telling my friend Cindy yesterday about this blessing. This getting to be full out stoked about the seemingly smallest things. This never taking anything for granted which comes with having a kid on the spectrum. I’ve come to appreciate living life this way.

It should be noted that Seth made it to the top for the first time this evening. He’s always been a little scared of heights, not panicky, but not adventurous. Look at him up there, proud as a peacock (and hello cute little redheaded dude, whoever you are).

I was listening to an archived service at The Agape International Spiritual Center today, and Rev. Michael Beckwith posed the question, “What is the best case scenario?” In any situation….he advised us to ask this. I was surprised how many times today, I tried to ask the question, and my brain could barely go there. It was difficult to stay focused on the best case scenario outcome. Worst case was somehow easier to imagine.

Flip it.

So…I’m feeling a little funky. Nothing is exactly wrong,….but what is the best case scenario for this evening?

We go to the park and enjoy the sun going down together, and breathe in some nice fresh air in the hour before bedtime, and wind up having a good evening. And we did.

Super climber girl with excellent coping? She was just icing on the cake.