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.

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.

Saving Sammy PANDAS OCD

Remember when bloodletting was accepted as standard medical practice? Or when doctors didn’t believe in germs and refused to wash their hands between patients?

Or when OCD was just a mental illness, and not much could be done other than attempt to manage the symptoms?

This is Beth Maloney and I believe she’s going to go down in the history books as a hero. She refused to take “no” for an answer, and figured out her son’s severe, debilitating, body-snatching OCD was caused by a strep bacteria, and could be cured with anti-biotics.

Her boy was twelve years old, bright, a math whiz at his school. Within a few months he could no longer leave the home, bathe, tolerate touch, sleep, and could barely eat.

Like many of us with special needs kids, she was given a lot of disrespect and abuse from those in the medical community. Like so many of us, she’s had to do a lot of research herself and has worked very hard to find the brave maverick doctors who offered her hope and eventually healed her son.

How many people are locked up, institutionalized who might be able to be helped this way?

Maloney wrote a book about her experience, titled Saving Sammy which will no doubt help countless children suffering from OCD and other mental disorders. I love the recent picture of her above. It speaks of victories, and full lives, freedom and hope.

This is Beth and Sammy on The Today Show:

Visit msnbc.com for Breaking News, World News, and News about the Economy

Beth Maloney will be interviewed on February 11th at 8:30 on Sirius XM’s Doctor Radio from NYU “About Our Kids.” It’s a call in show 877-NYU-DOCS with a national audience.  If you have questions for her, do phone in. XM 119, Sirius 114

8:30 am ET live
8:30 pm ET replay
5:30 am PT live
5:30 pm PT replay

Click on the book cover for the Amazon link.

PANDAS on Today

seth's panda

Doctor Nancy Snyderman and Beth Maloney, author of Saving Sammy talked with the dreamy Matt Lauer, about PANDAS this morning. PANDAS is the condition affecting our sweet boy Seth.

Snyderman boldy states, “Doctors don’t have all the answers!”

Honest and for true? They don’t?

Thanks for clearing that up Dr. Nancy.

Imagine! A child’s behavior might actually be a clue to an underlying biomedical issue. 

Now that’s something worth considering.