Brain on Fire

I recently read Brain on Fire:My Month of Madness by Susannah Cahalan. It is about a young woman working as a reporter in NYC, who suddenly shows signs of psychosis. She spends over three weeks in the hospital experiencing mania, paranoia, hallucinations, catotonia, etc.

It turns out she had something called Anti-NMDA receptor encephalitis. An auto-immune condition which put her brain under attack by her own body. It was treated with IVIG, plasmapheresis and steroids.

I read this with particular interest because of Seth and his PANDAS (which is now being called PANS because it seems strep isn’t the only trigger for many children).

The doctor that initially treated Susannah Cahalan accused the 24 year old of partying too much and suffering from alcohol withdrawal, (despite the fact that she wasn’t an alcoholic). He couldn’t figure it out, so he came up with that little diagnosis.

The schizophrenia label was tossed around.

She was in really bad shape and could have very easily been permanently institutionalized. She could have easily died from her condition if a different, brilliant doctor had not taken interest in her case.

The story made my heart break for the countless people with various conditions who are misdiagnosed. It made my heart break for people for whom science has not figured things out yet.

Cahalan’s story brought into focus how truly fragile our bodies are, but also how miraculously resilient.

Her story was told from a reporter’s viewpoint, piecing together details from her month of madness from medical records, family notes, interviews with doctors and friends, etc.

It was a gripping read. There were so many parallels between what she experienced and what autistic people likely experience. For example Cahalan is able to describe the experience of acute sensory bombardment from the inside. She is able to describe the social impairment many with autism face, from the inside.

Read more about the connection between Anti-NMDA receptor encephalitis and autism here. 

As a mother continually searching for answers, this book made me want to never give up.

Posted in autism, bio-med, PANDAS, PANS, special needs parenting, Uncategorized | 5 Comments

Matthew

This photo was taken in July at Todd’s parent’s 50th anniversary party. The man is Todd’s cousin Rob. His youngest son has cerebral palsy and other health issues. Rather than have him stuck in his new wheelchair, Rob carried him that whole evening. We all marveled at how he never put that little guy down. His devotion was humbling. His wife is battling breast cancer, but she was there, and in good spirits. Little Matthew was happy that day. He was flirting with Todd’s cousin Kathy, and she was baiting him to say she was “pretty.” He said it every time.

Sadly, little Matthew died this morning. He recently became very sick and his organs stopped working.

Rob’s wife underwent major surgeries less than two months ago. She’s barely had any time to heal.

How much can one family bear?

Please send them your prayers. Please pray for Rob and Martha. Please look at little Nicholas on the right in the photo above. He’s lost his brother today. His mother is battling cancer. Please hold this little boy in your heart.

A benefit is planned for this family. If you would like to donate contact me privately and I’ll give you details.

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The Sessions

HT and I saw The Sessions over the weekend.

It is the true story of a man who had polio when he was a child and spends most of his time confined to an iron lung. He’s never had sex, and would like to experience it so he hires a sex surrogate to help him accomplish that goal. As you can imagine he has tons of anxiety about the whole situation.

Helen Hunt plays the professional sex surrogate who helps him.

There is a lot of sex, a lot of nudity in the movie, but none of it is gratuitous.

And I think we should all have a moment of silence in honor of Helen Hunt’s body. Holy hot stuff. Not just for her age, but any age. What a brave actor.

And John Hawkes, the actor who played Mark O’Brien, the main character? I had to look him up to see if he really was disabled. His performance was so good I couldn’t tell. He was brilliant, brilliant, brilliant.

Below is a video of the actual surrogate that Helen Hunt portrays in the film:

Ah, life. It’s just a never ending opportunity to face our judgments, isn’t it? And hopefully, if we take it, an opportunity to let them go.

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Are holiday e-cards the way to go?

Okay, I’m really not working for Melissa at Ardissa. I’m not getting paid. It’s just that she’s offering a special on her holiday e-cards today and I wanted to let you know, and also have a little discussion.

They’re here!! Send the card that lasts a lifetime, with our holiday video e-cards. Starting at $11 (unlimited sends!). PLUS, use code CYBERMONDAY and get $2 off today only!

After chorus yesterday, Melissa was telling me she got lambasted at a crafting type fair recently. Apparently some folks have really strong feelings about holiday cards. They treated her like she’s the devil for getting her digital holiday card groove on.

Do you have an opinion on this?

Might there be room for both traditional and digital?

Will we all be going digital in the future and this is just the backlash at the beginning of a trend? People resisting change?

Should we save trees?

Is it more important to hold onto tradition?

Truthfully, what do you do with all your cards when the holidays are through?

I used to buy cheapo little photo albums and put the cards in them, (cutting them down to size to fit if need be). When the kids were little this was a wonderful way for them to know who the people in our lives were, since we lived so far away from most of our friends and family. Over the last several years, though, sad to say the cards just get tossed after the holidays.

What are your thoughts?

Do you even do holiday cards at all?

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Riley’s latest video

The following is something Riley has been working on. Film making is “her passion.”

About her latest video, in her own words:

This is a story about a girl who is bullied because of her weight and commits suicide. This video is just to show people what might happen if you bully someone. FYI, this video is not based on something that really happened. Although this video is made with Littlest Pet Shop toys, it is geared more toward preteens and teenagers.

Our girl. She’s somethin’ else.

Love.

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Happy Thanksgiving!

I’m thankful for everyone who reads this blog. May you have a happy Thanksgiving. May you remember to breathe. May you eat, drink and be merry. May you be in good health. May you know that you are loved.

 

*Melissa at Ardissa Video let me and several other people be testers for her new business. She’s offering holiday e-card videos like ours above. No hand cramps, no licking envelopes. No searching for addresses. No stamps. All you have to do is send the pics you want used. She starts taking orders Monday, November 26th and is offering very reasonable prices!

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Thank you, that was three.

I love Seth’s teacher.

Every morning the kids have a meeting, in which they sit in a circle and are given the opportunity to share. She picks the first kid, and the child shares something and then takes three questions from his/her peers. The hands are flying, but after three questions the child standing and sharing says, “Thank you, that was three,” and then picks the next child who gets to share.

That child shares, takes three questions and picks the third and final child who will share that day.

Not every child is picked to share. Not every child gets their question answered. They learn to gracefully deal with being disappointed, but given that the teacher picks the first child to share, she can make sure no one consistently gets left out.

I sat in on the morning share time Seth’s first day, and there is something adorable about seeing your kid, standing there in his little khaki pants, looking like he’s running a business meeting and saying, “Thank you, that was three.”

Seth is busy learning all day. They have P.E. every day, which is wonderful if you are a P.E. loving boy. (P.E. everyday would be awful for Riley, which is why they go to different schools). He’s jumped back into school with such grace. His teacher was homeschooled herself so she understood a lot about where he was coming from, and was so supportive. Even though Seth was afraid at first, he was willing to go. Willing to try. He’s doing really well. I talked with the students the first day about his tics and it has not been an issue. He’s been there a little over a month, and not one child has made a remark about them to him or to his teacher.

At the end of the day I pick him up. Each child has to run to their teacher, tell her they see their parent in the carpool lane, and shake her hand good-bye. It kills me every time, seeing him act like a little man, so formal, shaking hands.

Driving away from school he tells me about his day and when we get home, I eat him up.

 

 

 

My day isn’t complete unless I’ve tickled the snot out of him.

He loves it. I love him.

Amen.

 

Posted in appreciation, PANDAS, Parenting, Uncategorized | 11 Comments

Poses, Yolanda Dominguez, Messy Nessy Chic, and Us

I came across this post the other day at Messy Nessy Chic. It’s about “Poses,” a project of spanish artist, Yolanda Dominguez. I think by now we all know that models don’t really look the way they appear in magazines. Photo-shopping is everywhere, blah blah blah, but she is bringing into awareness that aside from being unrealistic looking, women are also often depicted as either weak or crazy, or both.

The kids and I watched the video and had a great discussion about it.

Something tells me they’ll never again be able to look at magazines which feature this ridiculousness without noting it.

And making fun of it.

Which is a heck of a lot better than buying into it, don’t you think?

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Amber

My friend Amber is amazing.

See for yourself as she speaks at the school her children attend.

She has a story with so many layers, so much texture, you just wouldn’t believe it. There are few people who could have come through her childhood with their heart in tact.

But her history didn’t break her. It grew her. So many of us who have experienced childhood trauma walk around feeling unworthy. Less than. Amber is not less because of her history, she is MORE. She is purposeful.

You wouldn’t know from the video in her post, but she is a total bad ass when called for. You want her in your corner and woe to you if you mess with someone she loves. What I love about the video, is it shows her sweet, caring heart. It shows her bravery. Her love. She is true and unashamed. By simply being herself she gives others permission to be true and unashamed as well.

So proud to call you friend Amber. You are an amazing public speaker.

Keep doing it.

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Kirsten Fawcett-Dubow, social worker, Cleveland

I want to tell you about my friend Kirsten Fawcett-Dubow.

She lives on my street and our kids are the same age and used to go to the same school. She co-founded the Girls on the Run chapter at the school and when I became a volunteer we got to know each other better.

She has a way of acknowledging the feat I have before me in raising my particular kids, without that panicked “slowly backing away” vibe, and also without the dreaded pity.  I always feel supported by her. She acknowledges and respects what I’m doing, and she’s championing me, but she’s not one bit worried I can handle it. Which is more than I can say for myself half the time!

When I was looking for a place to hold a retreat for autism moms? It took her two seconds to find one. Her mom has a lake house, which I didn’t even know about when I put out out the call to the Universe, (and I quickly learned where Kirsten got her generosity gene from). She also found me a yoga teacher to volunteer for the occassion.

Kirsten hosted the first slumber party Riley ever was invited to. Riley lists it as among the three best occasions of her life, along with getting her service dog Jingle and going to Mexico.

Kirsten’s daughters are full on adorable. They are kids who walk around with a light inside them, the kind that comes from being well loved.

Kirsten is a counselor at a local school district and she recently introduced Seth to another boy who has PANDAS. A cool, older boy who could offer him advice on what to say to peers and how to advocate for himself. It was the first person Seth ever met who also had PANDAS. It made him feel better not to be so alone. She intuitively knew it would. She also knew it would be good for the other boy to be able to offer guidance to Seth.

I could go on and on. Kirsten and her husband took the kids for a few hours no questions asked when Todd was in the hospital. Last year they helped me by taking the kids overnight so I could give Todd a night away as his Christmas present. To them it’s no big deal. To us it was our second night away in about ten years, having kids we’ve not been able to leave casually. It was a very big deal.

Kirsten even wrote me a letter of reference when I went to Divinity school. What? You didn’t know I went to Divinity school? Sadly, it didn’t take, but her letter! It was so lovely and heartfelt. At the time we talked about how great it would be if we all wrote letters of references “just because” for our friends. To let them know what we think of them. I guess this is my letter of reference for her.

In order to be there more for her family, Kirsten has recently re-jiggered her employment situation and she is going to be offering counseling services to new clients. She is working at Family Center by the Falls. Local friends, please spread the word! Spread it far and wide! She’s exactly the kind of counselor you want in your corner. Her new clients are going to be so blessed to have her. Soon I’m going to have a little button on my side bar under “sponsors” where you can refer back if you are looking for her info.

For everyone else, I ask you to consider writing a letter of reference for a friend in your life, just because.

Just because it feels awesome to do so.

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Spare Me Your Concern

The other day, I started reading a book recommended to me by a friend. It’s about an autism mom’s journey with her son. And before I could get very far, right there in the preface, she spoke of the poor people who are “taken advantage of” by charlatans who would steal all their money offering them various unapproved therapies and “shots” and blah blah blah.

As a seasoned bio-med mom, I can’t tell you how many times I’ve heard this. Often by people I like and respect. They don’t even know they are being offensive. They don’t even know they are talking about me. 

These are folks who tend work within the given system, on things that have been approved and accepted as standard practice by the scientific community.

We personally believe the scientific community is decades behind, and corrupt, so we have forged our own path. Our motto has always been if it isn’t going to hurt, and it has the potential of helping we would give it a try if we could.

What annoys me about people who “feel sorry about those of us being duped” is the superior attitude. The “I know better than you” about your path. The idea that I could be taken advantage of is condescending. I’m not new to town. I have two bachelor’s degrees, one of them in nursing. My husband is a hospital pharmacist(with a chemistry degree before that). We research the hell out of every intervention we try and we often know more than our physicians.

My child was one of the best responders to MB12 shots that our doctor (who people from all over the world brought their children to see) had ever seen. Overnight she went from screaming non-stop to screaming, oh maybe 20% of the time. That little bit right there saved our lives. We think it is cruel to work on behavior only and ignore what may be going on biologically within the child to cause behavior problems. When she felt better, she did better. The shots helped. Many interventions have helped.

Yes, we have spent a fortune on our children over the last decade. They are our priority. Some interventions have not worked, but you know what? It was worth it to try. It was worth it to hope. Many things have worked, and worked quickly to help our kids. Every practitioner had their heart in it. They weren’t hiding behind a curtain greedily rubbing their hands together, waiting to steal our money. (Well, one was but she was a straight up behaviorist with all the credentials, covered by insurance).

Every autism parent I know wonders if there wasn’t something more they could have done to help their child.

I should have worked harder with him when he was two. 

I should have got her involved in social skills groups when she was ten.

I shouldn’t let him sit in front of the TV all weekend (or computer), I should make him be more social.

I should have made him use the facilitated communication device. 

I should have mainstreamed him. 

I shouldn’t have mainstreamed her.

Are parents who “feel sorry” for those of us using bio-med therapies for our kids perhaps suffering a version of this? Is looking at us like we’re some sort of sad sacks that have been duped a way to appease their own what ifs?

Maybe. Maybe not.

Whatever their reasons, I do wish they’d be more careful about expressing broad sweeping pity for parents like me.

We’d all do better to consider the possibility we might be wrong.

 

Posted in appreciation, autism, bio-med, Uncategorized | 4 Comments

OHIO EARLY VOTING

A two hour wait with a line around the block.

I didn’t hear one person complain.

We were surprised when we arrived to see Stevie Wonder walking down the street with a big entourage. He was just leaving. People were so happy to see him, asking to shake his hand. He’s still got the long braids in the back, though you can’t tell from this photo. He was in town for a get-out-the-vote rally at Cleveland State.

The long line continued inside the building. When we finally got up to the booths, it was really tight, hardly any room to move. I felt very claustrophobic. Some of the ballot confused me, and it was so loud I could hardly think. I wondered if there were any provisions for special needs voters, because I was starting to feel like one. I had a list of Democratic candidates and issues and even still, it was challenging for me until I got in the swing of things. I think it was because I knew the kids were tired, and I couldn’t keep my eyes on them, and felt pressure to hurry up. And I was in the last booth, right next to the box people were dropping their ballots in so it was extra noisy and bumpy for me. The booth where I was writing kept being jostled. HT had no problem though. He finished first and took the kids outside and then I got it together. We felt this election was so important we wanted to really involve the kids in being part of history, so we wanted to be there, but next time I might just do absentee from the comfort of my kitchen table!

Our kids were were troopers. The experience was worth it.

We went for Thai food after.

And carved pumpkins later. *

In between I got my hair cut, again. More on that another time soon.

A full day.

It’s special to live in a swing state.

I hope we helped.

Love.

*This photo was from the first pumpkin carving. Those pumpkins were smashed on Halloween by some hooligans whom we need to hunt down and maim pray for. Ah, well, it all worked out. More toasted pumpkin seeds for us.

Posted in appreciation, Uncategorized | 5 Comments

She’s been hacked!

The other day, sitting at the kitchen table, I looked up from Facebook on my computer and said to Todd, ”

“You’re not going to believe this but ______ is voting for _______.”

He looked up from buttering his toast with a perplexed expression. It didn’t make sense to either of us. She is not conservative. I don’t know her family’s personal finances, but I’m guessing she’s not part of the 1%.

All day it kept coming back to me.

I could have sworn she voted for Obama in the last election.

That night, she sent out an update, saying her Facebook account had been hacked. One of her friends left a comment saying hers had been hacked as well. My friend was angry and questioned why this happened to her in this very important state of Ohio, and not to her friends in other parts of the country where the stakes are not so high.

It’s disgusting. Dirty, dirty politics.

It does make me feel better to think of women being hacked, rather than actually “liking” that candidate. Another women I know, a young one, also “liked” _____ on FB the other day. It confused me at the time, but maybe she’s been hacked too. She’s just graduating college and starting off on a promising new career. She certainly would like to make as much money as her male counterparts throughout her career, wouldn’t she? She uses birth control, so it’s not like she’d want to deny it to anyone else, would she? She’s not religious, so I doubt abortion is the reason. Yes, she likely has ambitions to one day make oodles of dough, but does she realize what she’s doing?

Another sweet woman in my life, almost retirement age, a lover of peace and Jimmy Carter…… over the last several years appears to have changed her tune about politics. She’s quoting Ronald Regan and recently posted something on Facebook comparing President Obama to Hitler. It broke my heart.

Sadly, she too has been hacked, but doesn’t even realize it.

That’s what Fox News, and the Rush Limbaughs and Ann Coulters of the world have done. They’ve hacked into good people and changed the wiring of their minds. I used to work at a radio station that played Rush Limbaugh and that’s what it does. It brainwashes you when you listen to it day after day after day. He gives you little quips and soon you think they are your own ideas. And if you repeat them, you kinda sorta sound smart. And that feels really good. But what you really are is a regurgitator of hate and not a very critical thinker at all. I’m not saying there aren’t smart Republicans. I’m saying if they get their info only from Fox News and Rush Limbaugh, they aren’t. If they claim to be for God, but are fed hate, hate, hate, to the point where they spew hate, hate, hate, they are lost. They’ve been hacked.

Because really, any woman who isn’t part of the super wealthy 1 %, and isn’t uber religious and voting straight down the anti-abortion line? Any women who would deny health care to someone with a pre-exisiting condition(say autism, or breast cancer perhaps)? Any woman willing to piss away the basic rights of her daughters and grandaughters to have access to reproductive health care? Birth control? Pap smears? Breast exams? The rights generations of women before her worked so hard to obtain? Well, something in her has been hacked. Maybe her conscience. Maybe her sense of justice. Maybe her knowledge of women’s history. Maybe just her Facebook account, but something, (hopefully not her very soul), has been hacked.

What’s sad is she wouldn’t even have the right to vote for the men who plan to disempower her if a lot of brave women hadn’t had their heads busted open to give her the privilege.

Perhaps that information has been removed from her memory.

Hackers do shit like that.

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“Walk as if you are kissing the Earth with your feet.” -Thich Nhat Hanh

Feeling really inward lately. I write but then don’t hit publish. All I want is quiet. Active decompression. Join me on a silent walk? Cleveland is so pretty right now.

Love.


Posted in appreciation, Uncategorized | 12 Comments

Digital Scrapbooking with Ardissa Video

My friend Melissa Berman has started a new business where she will take your home video clips and photos and make up a scrapbook for you to share online. It’s really easy and affordable. You just decide on your theme and send her the videos and photos you want to use. You can personalize it with whatever you want to say. Baby announcements, baby showers, weddings, birthdays, confirmations, Bar/Bat mitzvahs, sweet sixteens, graduations, anniversaries, holidays, retirements etc.

I can think of some other categories she might try as well. Melissa, if I may?

Break-ups. A scrapbook would be better than an email or a post-it note. Okay, maybe break-ups are a bad idea.

But what about wedding proposals? Engagement announcements! We’re pregnant announcements! Or better yet, we’re getting a vasectomy announcements! Okay, again, maybe not.

What about athletic events? Perhaps an on-line scrapbook of one’s Tough Mudder race to share with all your friends, for people who are Tough Mudders like my other friend Melissa? Or teachers? What about something teachers could share with parents at the end of the year, or mid-year.

Each video is only $99.

Perhaps we’ll do this instead of a holiday card this year? Think of what I’d save in stamps, and hand cramping! Plus, it’s good for the environment!

Anyway….congrats on your new adventure Melissa. May you be hugely rewarded for following your heart. May you work with amazing people. What an uplifting business to be in, celebrating life’s precious moments.

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Katy Perry Sings Duet with Child with Autism

My sister Kelli sent me this video tonight:

Kids with autism work so hard.

Watching the video took me right back to when Riley was three, and the tears just started to flow. (And that was before the little girl even started singing). It makes me take stock and appreciate how far Riley has come. Like the child in the video, everything was so very frustrating for her. Now, our girl is mostly joyful. She’s having a good life.

Riley loves Katy Perry. Watching that little girl sing with her and hug her long and hard at the end of the song was so precious. That little girl had to climb Mt. Everest to be on that stage.

I love her.

And I love my girl.

And I love all kids who live with autism. And I love all people who open their hearts to them.

I’m a big blubbering pile of love.

You can blame my sister for this.

Posted in appreciation, Asperger's, autism, Uncategorized | 7 Comments

Honk Honk

Driving Seth to school today we were stopped at a red light. It turned green and before I could even step on the pedal, the person behind me honked. Seriously, I wasn’t dilly-dallying. I looked back at Seth and he said,

“The light just turned green!”

I said, “I know!”

He said, “He didn’t even give you a chance.”

I said, “I know!”

Then I said,

“You know what Seth? I’m going to choose to believe that was an accident.”

He nodded, understanding where this was headed.

“Maybe it was an accident, right? And if it wasn’t, it isn’t worth getting sucked into his negative energy field and letting it affect my day.”

Then we started having some fun with it.

“Poor guy. He has no control over his own body!”

Ha-ha-ha!

“Poor guy. It must be scary driving a car when you might suddenly, at any given moment, be compelled to honk!”

Ha-ha-ha!

“Poor guy! Having no patience is noooooo fun!”

We were cracking ourselves up.

We pulled in and took our place in the long drop-off line of cars at Seth’s school.  Seth leaned over from the back seat to give me a good-bye hug and I twisted around awkwardly to hug him back. In doing so, my left elbow wailed on my horn.

I hope the people in the ten cars that were in front of us don’t think I’m an asshole.

My boy walked into school buckling over with laughter.

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Hello Old Friend

When we got there on Seth’s first day, the teacher took him over to a wall on which a big note was written. It said:

Shalom Seth! 

Welcome to our classroom! We hope you have a fantastic first day! Ask us anything you need to know. We are here to help and excited to have you join our classroom. In this classroom we are always brave, sometimes silly and always do our best work.

Love,

Ms. ___’s class

(all the kids signed it)

P.S. Be ready to learn new languages! 

Then she showed him his desk, and he sat down. A boy at a nearby desk leaned over and told Seth something, giving him direction, “This is how we…..whatever.” I can’t remember, but he was helping Seth out.

Then we sat in a circle, and I talked about PANDAS and the kids played a fun and silly game, and during all this I saw something. The same boy wound up sitting next to Seth in the circle. And the boy was funny. And he said something hilarious, and he and Seth made eye contact, and they laughed, and I got to see it.

What I believe I saw was a moment when two old friends, meet each other for the first time. It felt sacred. And I felt blessed to bear witness.

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Easing the Transition

billie jean

Seth was pretty nervous his first day of school. He was brave though, and went right in. His teacher is lovely and invited me to stay for the morning meeting and I was able to talk with the kids about PANDAS and they were all really sweet and cute. They played a fun game, and Seth joined right in, and I felt like he was in a good place when I left.

A highlight of the first day was a substitute for PE class. This meant instead of formal class, they did X-Box hip-hop dance. He tied with one other student for highest score, which gave him a bit of street cred. Finally his MJ obsession was put to good use.

Today on the way into the school, several boys came running up from behind, greeting him, shouting, “Seth! Seth!” I think it made him feel welcome and happy.

One of them told me all about Seth’s dancing the day before.

Today he had art class, and no way, but guess what? A huge portrait of Michael Jackson was hanging on the wall in the art room. It gave him great comfort.

Two days in, he’s doing well.

The Fedora waits on the back seat of the car until I pick him up each afternoon.

 

*Image Source: GroupieBlog, Huntermuttall.com, MJDavid007.com

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Beautiful, Beautiful Boy

So much has been going on I have not even had time to obsess over my new hair cut.

A few years ago, before we even got Jingle, I checked out a local charter school here, hoping it might be a fit for Riley. I’d found out about it after reading a book called The Nurtured Heart, which I read about on Kyra’s blog. I was looking for a counselor trained in the Nurtured Heart approach to work with Riley. What I found was a school that used the approach with their students. It turned out the school didn’t have the right supports for what Riley needed.

Seth was on a waiting list, but there were many potential students in front of him and it never seemed like a reality. Over the summer they wrote to ask if I wanted the deposit back or if we wanted to keep him on the waiting list, and I figured, what the heck? Keep him on. And then I forgot about it. At this point there were four students in line in front of him. We’d looked at a private school for him last year, and it was lovely, but it required us to sign a contract for the full school year. If it wound up not working for Seth, we would still be obligated to pay. We didn’t feel we could risk that with Seth’s health issues. And there was something more intangible that held me back from sending him. I had this idea in my head that Seth and I would have a year together, to make up for all the time in his life when the focus was not on him. If I want to, I can get on a real tear about how neglected he’s been.

I even started to write a whole victimy piece like this for my last writing group meeting and consciously stopped myself. Instead I wrote about the glorious soul Seth is. He’s not a victim. He’s been loved every second of his life. He is purposeful and came here for a reason. It felt good to remember this.

So Seth and I have been having fun. We take the dogs walking as soon as Riley leaves for school. We come home and have breakfast and do reading and some light academics. We listen to books on tape while he plays with Lego. If Todd is home he does math with him. And then later, I take him bike riding. He’s all about the bike. September 2012 will forever be etched in my memory as a little blond boy, whizzing by on his bike under a breathtakingly blue September sky. For the last eleven years I could never look at a sky like that without thinking of 9/11, but now when I see that blue, I think of Seth. He works with a dog trainer on Fridays. He helps in the kitchen. It’s all lovely and sweet, and there isn’t a thing wrong with what we are doing.

But the charter school called. They have a spot. They wanted to see Seth. They assessed him. He’s a little behind for his grade level because of our relaxed pieced together curriculum, but he’s fine. They know all about his PANDAS and they still invite him to be there.

Six weeks into our mother/son love fest, the world wants him back. A couple of weeks after I reframe him in my mind, from victim to powerful, the opportunity arises.

We would never send him to any old school. He is so sensitive. But this is the “Nurtured Heart” school! We felt in pulling our kids from school that academics could always be learned but unlearning broken self-esteem was much more difficult. This was why we pulled Riley, Seth came along for the ride, but then, his tics are what kept us from putting him back. He has no shame about them now, but all it would take are one or two kids to pick on him. I don’t think that will happen in this school. We will go in and talk to all the children about PANDAS. Seth and I together will explain it. When kids are given the respect of being told what is going on, they always respond with compassion.

This school is inter-generational. They have combined grade levels where students learn from being with those older and younger than them. They have senior citizen volunteers who build nurturing on-going relationships with the children. They also have college student volunteers who work with the kids. They have PE every day. The teachers are happy to be there and flexible and eager to learn, readily admitting they don’t have all the answers.

A week ago this wasn’t even a possibility. He’ll likely start on Tuesday. Seth is both “scared and excited.”

I’m left feeling remorse for the loss of “our year” but I think this is an opportunity we can’t pass up. Being immersed in a school like this could change the trajectory of Seth’s life. My friend Amy reminds me I can still do all the things I wanted to do with him. I can take him bike riding. I can schedule regular one on one on the calendar, write it in ink. This is particularly soothing coming from her, because she is a fellow home schooling friend and I respect her very much. The dog trainer says she’ll work around his new schedule.

My heart hurts as I buy khakis and polos. He is such a free spirit. He is so not khakis and polos. He’ll be uncomfortable in these clothes. I snip off all the buttons which he hates, and wash them many times to soften them up. Tomorrow I’ll run around looking for somewhere to put snaps or velcro where the buttons should have been.

I worry he’ll be exposed to so many germs. That is my big fear, worst case scenario. His health takes a dive. But can we lock him away from the world forever? Might the lift he gets in his spirits from being around so many positive people, and from feeling a sense of accomplishment and belonging also boost his immune system?

Rev. Michael Beckwith says to ask at times like this, “What’s the best thing that could happen?”

It might be really, really great.

And if it doesn’t work out, I am not afraid to have him home. It will not be overwhelming like it was when we first took Riley out of school.

So say a little prayer for my brave boy this week. It’s a big one for him.

To all of you who know him and love him, in person or just here on the blog, I thank you for holding him in your hearts.

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