Blatant Suffering

I went to a Yin Yoga workshop recently with a Buddhist teacher named Sarah Powers. She explained that in Buddhist philosophy, it is a given that suffering happens in life. No one gets out unscathed.

So, there is suffering. But then there is something she described as “making the suffering worse,” or blatant suffering.

Suffering is an unavoidable aspect of being alive, but then we pour gasoline on the fire of our suffering, and really run with it.

Easy example: Someone cuts me off in traffic, I suffer. Maybe it was a close call. Maybe it scared me. But then what do I do to hold onto that suffering? What do I make someone cutting me off in traffic mean? What is at the core?

-He didn’t wait his turn.

-That’s not fair.

-I’ve been disrespected.

-I don’t matter (how far back does that go)?

-Fury.

How long do I suffer over this incident? Am I still suffering ten miles down the road? Do I need to be?

~

My child has a problem at school. I suffer. I don’t like to see my child in pain. Putting wind in the sails of my suffering, I look too far ahead. Off I go, predicting all kinds of future suffering for my child (and thus for me). Berating myself as a parent. Did I not do enough of this, or too much of that? Berating the other players involved. Lamenting why the world is the way it is.

Do I need to go there? Can I just be in this difficult moment with my sorrow? Do I need to heap onto it and make it worse?

Can I make room for my own suffering, rather than run from it?

Can I meet my own suffering with humility, rather than chesting up to it screaming, “NO!”

Can I just say, “Oh…there you are,” and offer it compassion, acknowledging every other person on the planet suffers too, at some point. Even if they put on a show, pretending they are immune.

The first step is to recognize suffering for what it is. In a moment of angst, can I be present enough to pause and name it:

I am suffering. 

This would be a good time to take some breaths.

And then might I ask, How am I making it worse?

More breaths.

~

Pain in my shoulder roused me from sleep this morning. It’s chronic, off and on, but mostly on. In those moments between sleep and awake I noted it as suffering. 

Lying there in bed, in the dark, eyes closed, I didn’t resist. Silently, I whispered to my shoulder pain, “There is room for you.”

Breathing,

breathing,

lifting into consciousness.

By the time I was fully awake,

it was gone.

Is Your Kid the Welcoming Kind?

Cleveland Circle of Friends (2009)

One day when Riley was in third grade, I met her on the playground after school and she fell into my arms, sobbing.

“Why doesn’t anyone like me?”

No one had made fun of her. No one had shoved her down.

But no one had included her. Lots of playdates happened every day after school. No one ever invited her.

Soon after, we started a monthly “circle of friends” group in our home. Initially, we talked about Asperger’s, and how it affected Riley; her gifts and challenges. We talked about how those girls could support her as friends, and they did. They were awesome once they were given the tools to know what to do. We usually did one activity, and then had free time and occasionally I’d lead them in a guided meditation.

You’ve probably given your kids the “don’t you ever bully” speech.” Or even, the “stand up for someone if you see them being bullied,” speech or maybe the “get help if you see someone being bullied” speech. But have you taught them how to include someone who might be struggling socially? Because excluding someone is bullying’s cousin. If done deliberately I would go so far to say it is bullying. But like the girls in our circle of friends group, I think many good-hearted kids simply don’t know how to include someone that doesn’t easily jump right in.

It isn’t just autism. It could be shyness. It could be anxiety. I have a friend whose sweet daughter (who happens to be chubby) was the only girl in her class not invited to a birthday party…in ELEMENTARY SCHOOL.

Even as an adult, excluding someone from a community has serious emotional consequences on the person being shunned. I’m not sure the popular people, people “social” comes easily to, truly get the long term ramifications of shutting out another human being. If it’s never happened to them, they might not understand just how crushing it is.

I know when a group of kids ignores the presence of a quiet kid, they’re not plotting, “I’m going to scar this person for life.”

But it can.

It also scars their mother.

Teach your kids to be gracious and welcoming. To look out for the one who is struggling. Teach them to be kind and to have the common courtesy to acknowledge every person in the room. Offer them guidance on what they might say to welcome someone who is shy or holding back. It can be as simple as a smile, a hello to acknowledge their existence. A stepping back and widening the circle to include them in a group conversation. Lead by example. Compliment others that are gracious with new people, (in front of your kids). Let it be known that you value this welcoming quality in a person.

My child has worked all her life on developing social skills and it still doesn’t come easy. She is so brave.

If your child were on a group hike, and sprained their ankle, and no provisions had been made for the injury..no choice but to soldier on, would it be reasonable to expect one or two kids to slow down, to maybe walk with that child? Might they even see some rich and beautiful scenery that would have been a blur had they kept pace with the rest of their classmates?

Would it be reasonable for those classmates to trade off? They of course don’t want to spend all their time at someone else’s pace, but could they go a little more mindfully for 20 minutes, and then let someone else walk with that classmate? Might they recognize and honor the one that is working harder than any of them, just attempting to keep up?

Would it be okay with you, if your kid was part of the group that ran ahead and left that child to limp for miles, alone?

Forgive us our trespasses

Forgive us our trespasses,

as we forgive those who have trespassed against us.

HT works a second job, part-time at a small compounding pharmacy. The owner of the pharmacy is generous enough to treat his employees to a nice dinner around the holidays, his way of expressing appreciation for all they do. We were having a fine time Saturday night. People had a few drinks. Dessert had already been served, things were winding down. I couldn’t really hear much from the other end of the table, it was so noisy, but then it happened. The husband of one of the employees, started making fun of someone with Tourette’s. This guy is generally the life of the party, joking around; he has people in stitches with his stories.

I don’t know how it started, but he was suddenly mimicking the tics of a grown person with Tourette’s, someone that he knows. Like he was doing a comedy impression. It went on for a bit. Then he talked about how the guy he knows, with the Tourette’s, was abused as a child, insinuating this caused the tics, or made them worse.

I waited for my husband to say something.

He didn’t.

The man quickly shifted his topic to being a (his words) “deplorable” Trump supporter. He was loud and proud about it.

I looked at Todd and what I told him with my eyes was IT IS TIME TO LEAVE.

We got up and walked to the other end of the table, to the owner of the pharmacy, who seemed so happy to have everyone gathered. As we said our good-byes I stood inches away from the “deplorable,” and had a vision of flicking him in the head as we walked past. That vision seriously came to my mind. What would happen if I just picked up a cloth napkin off the table, and twirled it tight and snapped him in the head with it, like a towel in a locker room?

We stood outside the restaurant waiting for the valet, our eyes met and HT said, “What?”

“You know what! How could you not say something? Were you expecting me to handle it? These are YOUR people.”

“Do you want me to go back in?” he asked.

I glared at him.

The valet pulled up with our car.

Taking out my phone I pulled up a photo of our son. The one with tics. The one that can suddenly, overnight, look like he has Tourette’s when a virus or bacteria causes his immune system to over-react and attack the movement area of his brain.

Shoving the photo in HT’s face I asked, “Don’t you feel kinda like you just betrayed your child?”

Eternity went by in his one-second pause. He bowed his head and replied quietly,

“Yes. I do.”

His willingness in that moment to be honest and vulnerable, turned the ship around. Had he gotten defensive it would have been so much worse.

It was a long, 45 minute drive home, and we fought some more, (with me texting a friend for support behind his back) but the edge was off. We were getting back on the same team. Once home, around 11PM, we walked the dogs, and we talked more. I acknowledged that this was a big night for his boss. And that confronting the “deplorable” would have ruined it, especially so late in the evening when there wouldn’t be time to recover the mood. HT said he would address the woman who’s husband caused the scene, and tell her how hurtful it was, when he saw her on Monday. Not that it’s her fault, what her husband says, but she was giggling along with it, and so were some others. I forgave him for not knowing what to do in the moment. The truth is, I didn’t quite know what to do either. I was stunned.

While I was glad he planned on talking to his co-workers, I felt the need to say some things too, as a mother. I wrote an email, describing who our son is, and what his struggles have been. I attached photos of how little he was when his PANS started, and photos of him now, because I wanted them to see his face. I wanted them to know that making fun of someone for something they can’t control is ignorant and cruel. I sent it to HT’s boss asking him to forward it to everyone that had been there. I hoped that even if the “deplorable” didn’t take my message to heart, maybe someone else in the group would. Maybe it would be an opportunity for learning.

Driving to teach a yoga class the next morning, I thought about times I have inadvertently offended someone. When you know better you do better, and there have been times in my life where I didn’t know better yet. Maybe he didn’t know better. While I feel it was the right thing to do, to address this, I also have to look into my own heart and know, without a doubt, that I have been on the other side of this equation. And undoubtedly, there have been occasions I’ve offended people without even knowing it.

This passage from The Lord’s Prayer said over and over in my childhood, my grandmother’s voice, with mine mumbling underneath it in church,…and said every night at bedtime prayers…..repeated in my mind,

Forgive us our trespasses, 

as we forgive those who have trespassed against us.

HT’s boss called the next day to apologize for not setting the tone at the dinner. The “deplorable’s” wife apologized via email and in person to HT on Monday. Another colleague also apologized via email, and in person.

I have gone back and forth about whether it was necessary to address this, in this way, and if I let my ego get the best of me. Could I have been a bigger person? Would it have been better to take him aside and talk to him privately at the dinner? Perhaps, but I didn’t have that presence of mind at the time, because I was upset. Because I am human. Because I was stunned. HT was too. Some people think it is cowardly not to address a person face to face, but those are usually people that have the words, right there, in the heat of the moment. They are good arguers. Quick tongues, quick on their feet. I need to think first. As a special needs parent, I’ve come to respect different learning styles, and different ways of expressing. I express through writing.

Forgive us our trespasses,

as we forgive those who have trespassed against us.

In the heat of the moment, I freeze and can’t talk. Or I cry. I’ve gotta feel really safe to express myself when I am upset, and I didn’t know this guy. And he didn’t seem all that safe to me.

So, that’s how it all went down.

I felt like if we didn’t address it we were betraying our child and others like him.

Trump might have won the election, but it is still my country too. I don’t want my world to be a place where making fun of people with disabilities goes unchecked.

I didn’t flick the guy in the head. For now, that’s going to have to be big enough.

HT’s Perfect Response

Writer Elizabeth Aquino is asking special needs parents to answer this question:

What would I say to the parent I was the day before my child was diagnosed with his or her disorder or the day before I knew?

She’s putting together a video of parents holding signs with their individual bits-o-wisdom.

Thinking about the question, I wondered, how could I narrow it down to a sentence that would fit on a little piece of paper? What would I say?

I thought. And I thought.

Finally, I tossed the question out to HT as he was grabbing his jacket and slipping on shoes, ready to take the dog out one last time before bed. He put his index finger in the air and said, “I’ll get right back to you.”

I sat at the computer thinking hard. What would I say? What would I say?

I was deep in thought when HT came back in the kitchen.

“It’s going to be okay,” he said sincerely. “That’s what I’d say to the parent I was before we knew what was going on.”

“It’s going to be okay.”

Can’t top that one.

What would I say to the parent I was the day before my child was diagnosed with his or her disorder or the day before I knew?

You’ll have to wait to see the video for mine. I’m still thinking.

If you’d like to be part of this project, please send your photos with your bits-o-wisdom to Elizabeth: elsophie AT gmail DOT com.

And remember, it’s going to be okay.

((Hugs))

The only thing better than being a boy obsessed with Lego, and having a new Lego to put together…

is when your sister, whom you adore, suddenly, inexplicably, begins sharing your interest with you.

Here they are, beginning to work on one of Seth’s Christmas presents. We like to space things out. Save some for a snowy day. Seth is so happy she is playing Lego with him. Letting him lead. He is the Lego expert you know.

In other news, Riley hugged HT the other day. She is not a cold unaffectionate person by any means, and always allows our affection, but it was the first time she spontaneously hugged him, and he could not wait to tell me. It’s one of those things an outsider just does not get. If you were hanging out with us, you wouldn’t assume she’d never hugged her dad on her own before. It would be a given for most kids.

My dear friend’s husband died when her son was just five. She says, one of the hardest parts has been…the feeling of there not being another person who knows stuff like this. Shared intimate moments about your kid. Only Todd and I know what Riley looked like the morning when she was six months old, and he returned from a business trip and we lay in bed, and she showed him how she had learned to clap while he was away.

Only the two of us remember when Seth used to say, Yi Yuv You Yie-yee, (I love you Riley).

So when he tells me she hugged him, I get it. The depth of it, reflected in the glint of his eyes as he smiles.

When she shares her brother’s interest, we know what a big deal it is.We’ll remember it.

The gift of autism, for us, is we don’t tend to take things for granted.

I mean, sometimes we do, but typically we don’t.

She makes our lives so much richer.

Just ask her dad.

A Very Successful Clay Session

My childrens’ self-portraits. It’s uncanny, isn’t it? The resemblance?

We are up to our ears in pottery.

As in…next class…if there is one, they are only making pieces to give away. Hot Toddy thought of it and I second the notion. Hear that friends and family? It’s your lucky day.

This is a set of plates they made.

And you can never have too many coil pots. No sir.

We went the whole eight week session with no problems. Not one. Riley has grown so much in the last year. It is beautiful to behold.

How you doin’?

Riley cut her wispies (by herself) a few weeks ago and now has some “signature bangs” which she incorporated into her sculpture. I tried to talk her into getting layered bangs, to kind of hide her work, but she insisted she likes her signature bangs, so there you go. Liking yourself just as you are? I’m not going to argue.

Working with clay requires one to be flexible. That includes moms.

Flexibility. It seems like the very thing, the one thing Riley and I have been teaching each other since before she was even born.

We’re getting there.

We really are.

Homeschool Co-Op

This is Riley, (below right), enjoying a quiet lunch with two other girls at the homeschool co-op. The three of them decided to excuse themselves from the busy gym and eat in one of the classrooms.

“Mom, can I go eat with A & H please?”

Um, yeah. Why yes Riley, you may.

Friday was the last day of this session, (our second with the group) and it was sharing day where tables are set out and everyone can look at what the kids were working on in each class. I taught a class on dogs this time around.

We learned about service dogs.

And breeds.

Grooming (everyone got a turn brushing Jingle)

And lots of other things like canine body language vs. human body language, how dogs see, taste, hear, etc. Where dogs come from on the evolutionary scale, how they got to be domesticated, and on and on. You should have seen me pulling curriculum out of thin air! It was a stretch coming up with eight weeks of material, but mostly it was a success.

Children in the co-op sign up for two classes each, with an hour for lunch and recess in the middle. My kids were in the dog class for block A.

Jingle lives for co-op.

For block B, Riley enjoyed a scrap-booking class, not taught by me. Or assisted by me. Or requiring a single thing of me. The whole time.

Me? I sat outside of the class and worked on material for my next week’s dog class. Like it was nothing! Just another mom, not having to be in her kid’s class with her. That’s right baby, check me out!

Seth took a class called Discovering your Artist’s Eye. He learned about positive and negative space, drawing using different sides of the brain by turning objects upside down and sideways. Using grids to ensure correct proportion. That kind of thing.

Other classes offered included Spanish.

Oragami

There was even a class on “How to be a knight,” which was adorable. A bunch of rambunctious little boys learning how to be chivalrous, all while using homemade swords they helped saw, and shields they cut out themselves. They even sewed their silver knight costumes!

There were other classes too, one on theatrical and other games, there is a Girl Scout troup that meets during Block B. A nursery for the little ones and a class for preschool age kids. I’m probably forgetting something. Classes change up every session and parents are expected to teach or assist or help out with set-up/clean-up. There are between 40 and 60 kids in this co-op at any given session. I’ve so enjoyed meeting all the parents.

It has truly been a blessing to us. (HT got verklempt the first session, seeing Riley sitting in a small classroom, relaxed, engaged, learning without intense anxiety and fear).

On the way home Friday, in the van, I said, “Riley, I am so glad you have Asperger’s. There was so much about school that didn’t make sense for any of us, but if you’d not been such a sensitive person we never would have realized it. It’s because of you that we are homeschooling, and we get to go to co-op, and do so many other amazing and fun things together, and spend time with so many nice people. I appreciate you.”

She’s taken us down a different path and many gifts have come with it. She is such a blessing.

She thought about this for a minute, then said,

“And I couldn’t do all the things we get to do without your support. I appreciate you, Mom.”

Imagine, from where we’ve been, to this?

A sense of calm came over me. We’re okay. Rolling along, I felt all doubt melt away. We are where we need to be right now.

Things have a way of working out.

The King’s Speech, Stuttering, Tics, PANDAS

The other night we went to see The King’s Speech. If you have not see it yet, I’m sure you’ve at least heard about this gorgeous movie. Colin Firth won an Oscar last night for his performance in it. The film is about a relationship between a speech therapist and a man who eventually becomes the King of England.

The future king has a stutter, …the result of emotional trauma as a child.

Seth stammers. Or is it a vocal tic? Or a combo of both.

Sometimes it’s barely noticeable. Sometimes it can take him 15 tries to get the first word of a sentence out.

And watching the movie sent me reeling…all the guilt about what this boy has endured as a special needs sibling. All the moments I had not one drop of energy left for him. I stopped breastfeeding him in one day when he was six months old because I had a panic attack and could not deal and had no support. All the times during those very trying years when I needed to run from the house, to catch my breath, leaving him behind. Both parents got away separately, even just a trip to the grocery store, but he never did.

What was it like for him to be woken from every single sleep as an infant and toddler to the sounds of his sister screaming(not your fault Riley, you could not help it)? What is it like to be so “perfect” all the time, not rocking the boat, because intuitively he knows his mom and dad are counting on him to not make waves.

What’s it been like to never not once take his frustrations out on his sibling, because she can’t help it/handle it/will scream more.

What’s it been like to grow up in a home where it is rarely about him?

Then again, maybe it isn’t a stutter. Maybe it’s PANDAS. Seth’s tics overall have been exacerbating lately, and it happens after he’s been sick. Sometimes I wonder if his love of Michael Jackson’s moves is because they are so jerky and staccato and can hide a lot of tics. Right now it’s a full body seize followed by an arm circle. They change up a lot. He seems to be able to hold them in a bit before really letting them out. Is it Tourettes? For a few weeks I was laying awake at night, wrestling with how to help him, worrying about long term repercussions of an inflamed brain (the hypothesis behind PANDAS and tics) vs. the repercussions of long term anti-biotic use.

After trying many different modalities of boosting his immune system so he will be less susceptible to strep, we are also finally going the antibiotic route for him. We’re at least trying it to see if it helps.

His regular pediatrician doesn’t seem concerned(or knowledgable about PANDAS). He was not at all interested in reading Saving Sammy. I wonder how he would feel if it were his child suddenly wracked with tics overnight?

Luckily, our kids’ other doctor, the one who treats autism is very knowledgeable about PANDAS, and very comfortable treating it. The only problem is she doesn’t take insurance. Which is actually good, because she isn’t governed by insurance companies on how to treat patients, but you know. It costs a lot.

I’m feeling this need to take him away for an extended time, just me and him, go to the mountains. Go to the beach. I don’t know. Not really do-able, but the desire is there. I’ve signed up to teach a Lego class (architecture, history of Lego, etc.) at the co-op because it is his passion.

Lately, I notice in play with other boys he is not standing up for himself. They like to take his hat and play keep-away with it. He acts good natured about it, but I know it bothers him, and there have been times when he’s looked on the verge of crying when it’s happened. (And let me be the first to say, I’d have been the kid having a good old time taking the hat when I was his age). I admit to stepping in and I probably should just let him lose his shit on these kids but I’m not sure he would.

Intuitively I know he is okay. I know he is a deep, deep soul who will be fine, fine, fine. I’m not trying to make drama where drama isn’t due, but I’ve got my eye on you buddy. You will not slip through the cracks. I promise.

Anyway…I loved the The King’s Speech. It was brilliant and beautiful.

Just like my boy.

Standing in Another Hollywood-istic Place

Just over two hours ago I woke my husband from a sound sleep and told him I couldn’t take it anymore.

Riley had been sick all night, (tummy trouble associated with autism)and though he took the first shift, and was up ’til 2AM, by 5AM I was spent. Because not only is she sick, she can’t deal with the sensory issues of being sick, so she cries and moans, and ruminates on every bad feeling and worries and worries and worries and worries and worries, and worries and worries and worries and worries and I have spent so much time on the bathroom floor with this kid lately, flu bugs, and colds and now this, and my body is cold and achey and I lose compassion and feel the years being taken off my life because everything is just so much HARDER than it is for most, at least typical kids, and on and on, sinking my own self into despair.

And here’s the thing about Todd. I can come in and wake him when he himself has only had three hours of sleep, and I can say things any other person on the planet would judge and condemn me for. Things mothers should not say.  And he can look right through it and know my heart, and tell me he gets it, and it’s okay, and then two minutes after I cry and blow my nose and get it out, I can have him cracking up laughing…goading him to tell me whom he would tell to F off, right now if he could. And he indulges me.

And it’s after all this, I can put things in perspective, and remember the absoutely great day Riley and I had, and be grateful, so very grateful, to be her mom.

She had her first professional manicure yesterday (and I got a pedi). She was so cute reading People Magazine. Searching for Glee characters, and she found them.

She chose two glittery shades and was pleased,

“I feel like a celebrity,” she said, admiring her nails. Sorry for the blur.

Then we were hungry so we went to a restaurant, and had the good fortune to witness a man propose to his sweetheart at the very next table. We clapped! And then Riley whispered to me,

“Isn’t she a little young to be getting engaged?”

She was. Good eye Riley.


She had a gift card to Justice Just for Girls, a Christmas present from her grandparents so we went there. The ever so helpful girls who work there, asked every two minutes if they could assist us. Trying be polite and make conversation, I mentioned to one, “She has a gift card burning a hole in her pocket.”

Riley leaned in, looked the salesgirl in the eye and said, “She doesn’t mean that literally.”

She spent a nice chunk of her gift card and saved some for next time.

From there we went to Charming Charlies and she bought even more accessories, cause the girl is all about accessories lately.

I love when Riley makes up her own words, which she did here after trying on this headband, “I feel very Hollywood-istic.”

Indeed.

We spent less than $25.00 at Charming Charlies and she got a whole lot of bling. She even tried some of it on her dad.

So at 5AM, I might have been stretched to my cold achey limit, but I can look back several hours and stand in a another place. I know I have linked to this video before, but I do it again, because I need to be reminded of it.

Special needs kids have it harder. Special needs parents do too. But we also get the amazing highs over things parents of typicals take for granted. No one has ever been more in love with their kid than I was yesterday on our first girly girl mani pedi shopping day.

Bliss. Because a couple of years ago, she never could have stepped into a nail salon due to the smell.

Stand in another place.
Stand in another place.
Stand in another place.

In this minute, you may feel like crap, but you won’t always.

Thank you Todd. Thank you, thank you.

And Riley,

I do so love being your mom.

The BS Hustle for Worthiness

Today I watched a DVD of a talk by Brene’ Brown, titled The Hustle for Worthiness. It made me think about some things. So often, home with kids more by default, not necessarily by choice(at least at first), I feel like I should be doing more. Doing something “important,” or at least more impressive. It’s not enough to be raising two children, homeschooling them, dealing with a multitude of special needs issues, etc. I should also be an author (a best selling one, of course). I should be an uber blogger. I should be making lots of money. My house should also be perfectly decorated, and always clean and tidy. My body should be perfect too. No fat. No sag. Toned, baby. And I should always be loving and calm with all children, pets and others who cross my path.

Why?

Would I feel worthy then? And worthy of what? Validation from those on the outside looking in? Because the people on the inside don’t care.

Why do I ever, even for a second, take time and energy away from my precious ones, …to ruminate about what I should be when I’m already enough to those who actually love me.

So let me let you in on a little secret. My house is a freaking mess. Every room has its share of mess. I will never be able to stay on top of it, and I often give up. I found cat poop in the basement yesterday, and I looked the other way…because I did not have a drop of energy left to deal with it. HT cleaned it up this morning. Bless his heart.

Here’s another one. I have wonderful ideas about decorating, but do not have the funds to do so, and I am sometimes embarrassed about my house, and want to qualify for guests (or photos on the blog) this is not my wallpaper, I plan on changing this paint color, it was like this when we bought it…going to replace it someday, and on and on. So many blogs are so pretty. Everyone’s houses are so cute. Cept’ mine. Oh the shame.

Then there’s this….I still can’t figure out what to do about Seth. He’s got a huge flare of tics going on, and I worry he’s not getting the help he needs because he isn’t a squeaky wheel. I lose sleep over this. Something isn’t right. I feel so overwhelmed so much of the time dealing with the complexities of my childrens’ health issues.

What if I just put these feelings out there, and love myself though them? I am after all, a mom who will decorate her face with a Crayola Washable marker at lunch, just to see her kids smile. I do lots of other good stuff too but I’m not going to list them; not going to “hustle for worthiness” today.

I am enough.

I am enough.

I am enough.

Let it be.