Safe Travels

After an exhausting month, and following an exhausting day, I dropped the girl off at school and headed to the beach. I had about an hour before I was to teach. I walked for a little bit, then sat in my trusty four-year-old $10 beach chair from Target.

A family walked by. Two boys. Maybe 8 and 10. One boy flapping his hands fast and furiously, appearing to be excited by the water, the freedom of the ocean air. It likely wasn’t his usual routine to be at the beach at 9AM on a Tuesday. They seemed to be on vacation.

Passing me without noticing me, I noticed them. My attention went to the mom. My heart went out to her.

Without knowing her story, I know her. Having autism comes with gifts, but it isn’t easy. It comes with challenges. When those challenges cause your child to suffer, you suffer too. So this mom has been through some stuff. The whole family likely has. And let’s be real, vacations with kids are technically not vacations for moms, as a rule.

Closing my eyes, I took a breath and sent them loving-kindness. I prayed for their happiness and that they be safe from harm. That they be healthy. That their lives be easier rather than harder.

I like to pray for unsuspecting people. It’s a good way to pass time while you’re waiting. I do it in line a lot. If you’re bored, antsy? Look around and pray for someone. And if you don’t pray…you can just wish them well. Or give them the benefit of the doubt.

If you want a real workout, pray for someone you don’t like. I did this recently and it really changed a very charged negative loop I was on about someone. It reminded me I didn’t really know her struggles, or what would make her act like such a hag.

What a relief.

Anyway…I hope that family is having the best vacation. I hope that boy is flapping with joy, and that his heart is content. I hope the mom is getting some time-outs, just for her. May they be well.

Safe travels, everyone.

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.

Carmax Love.

HT and I had a wonderful experience this week buying a car at Carmax. We were left alone to browse a huge lot of cars, and then we came inside and used a computer to narrow down our search. We printed out pages of the ones we wanted to see, and they have the row #’s on the print outs so you can go take a peak. Not one person breathed down our necks during this.

Then, when we were ready to do some test driving, we were helped immediately by a guy named Eddy. He was polite. He didn’t try to steer us toward what he wanted us to buy. It is a no haggling place. The price is the price. What a relief. The salespeople do not get commission based on car price. They get one flat fee. Anyway, he was great! He even let us use his computer to do a little research and check out the blue book value, etc.  And he left the room and gave us privacy to do it.

So now I have a new (used) car that rides like a dream for my commute to the schools. Our second car limped all the way to Florida and was about to die, so it was time.

But wait! That’s not why I’m here…. the reason I started this post is I wanted to mention, there was a sweet young man sitting in the waiting room at Carmax. I could not tell if he had a cognitive delay, or he might have had CP, but his speech was very affected. He was late teens/early twenties, I’d guess. He used a walker to get around. His mother went up to the counter for something and he grinned at me and said,

“That’s my mom.”

I smiled back at him and asked, “Is she nice?”

He said, “Yeah she is! And she’s beautiful too!”

I laughed, “You are right about that. She sure is.”

His mom came back and sat down next to him. He hooked arms with her, beamed at me, and said,

“And she’s alllllll mine!”

Take Your Head Out of the Sand

When Riley was three, I was attending a weekly meeting to discuss A Course in Miracles. I’d found the book a couple of years prior, and dabbled. I felt better every time I picked it up and read a little. It was at this challenging point in my life that I began studying it in earnest, and it got me through a very rough time and truly informed my spirituality. It still does.

There were anywhere from a dozen to two dozen who showed up at those meetings, and at least three of us (all women) had a kid on the spectrum, though I had not faced it yet. Two men had challenging sons. I don’t know if they were diagnosed with anything or not.

I would share my troubles, week after week, about this kid that screamed and cried for no reason, and finally one day, one of the women whose own son had already been through it said to me,

“Your doctor has not helped her. You need to take your head out of the sand. This kid sounds exactly like mine did, and she is hurting.  You might want to see the doctor we see.”

Blunt.

Her son is a few years older than Riley and one for whom removing dairy and wheat had a transformative effect. He oozed pus out of his nose until his system cleared of it. He “woke up” from a foggy haze just getting those foods out of his system. They’d also done chelation and a bunch of other interventions that helped him even more. He was getting better, and she was transforming herself spiritually, working on deep forgiveness in every area of her life.

Our regular pediatrician had advised us to simply, “Tell Riley she’s making a big deal out of nothing.”

And, “Kids have tantrums, and it is up to you to set limits.”

He was clueless as to what we were really dealing with, what that little girl was living.

“She’s fine. She has advanced speech.”

At three and a half she was having panic attacks and had the self-care skills of an 18 month old, but whatever. She could talk.

“You need to take your head out of the sand.”

If it had been anyone else to tell me to “take my head out of the sand,” I would have been offended and might have turned in the opposite direction. It was shocking. It stung.

“You need to take your head out of the sand.”

But it opened a door.

I knew she was coming from a place of love. I knew she cared about me and my child. I knew her kid had gotten better. I knew he used to be “just like Riley.”

Take

your

head

out

of

the

sand.

Sometimes, it’s just the thing we need to hear.

Witness

Last night was the 8th grade graduation at Riley’s school. Riley is in 7th grade, but she really wanted to go. It was her birthday yesterday…13! And she wanted nothing more than to spend her evening seeing her 8th grade friends graduate. It was a very beautiful and emotional ceremony. Every one of the kids had faced challenges due to their learning differences. Every one of them had walked a very long and brave road to have come this far and be off to high school next year. The graduates each created a power point presentation set to music, including baby photos and photos of when they first arrived at the school(some were so tiny), and shared some of their favorite memories there. Being in a room full of special needs parents, knowing how hard they have worked to get their children to this point in their lives. Teachers were crying. Parents were crying. At one part of the ceremony, each student took a single rose and presented it to their parents. Be still my heart.

In the row in front of us, left to right, there was what appeared to be a mom, a ten year old brother, a step-mom and a dad. Mom and dad, furthest apart from each other. When their daughter approached the row with her rose, they all stood up, and the step-mom backed up ever so slightly, allowing the mom to get in there. She was respectful that this was the other woman’s daughter, and bowed out for the moment. And the mom and dad hugged their child, who had come so very, very far.

And then, not two seconds into the hug, the mom turned and reached out her arm and pulled the step-mom into the circle, and they all embraced.

And then the girl was off and back to the group of graduates at the front, and the row in front of me sat down, and the mom held her long stemmed rose. And she smiled and inhaled it.

And then, she reached across little brother, and offered it to step-mom’s nose, and she too inhaled it deeply, and they just kind of acknowledged each other again with their eyes, and then the moment was over and it was on with the ceremony.

The whole transaction was between the two women. The dad was kind of oblivious to it, his eyes focused on his daughter, up front.

Love for a child.

It’s a powerful thing.

Amazing Self Advocacy at the Dentist!

The kids had dental cleanings scheduled for after school today. Last time, Riley really wanted me to go back with her. This time, as I’ve done every time, I asked if she wanted me to join her? Or was she okay going by herself?

“I think I’m okay going back by myself,” she said.

I played it cool.

“Okay Riley. And if you want me for any reason, you just say, “Excuse me, but I’d like you to get my mom.”

She looked up from her People Magazine,

Okay? Okay. We’re good.

The hygienist came out and took her back. No prob.

I sat in the waiting room with Seth, basking.

When she was finished, she came out as if she’d always gone back to get her teeth cleaned without me. Totally nonchalant.

Can you take it?

Next it was Seth’s turn. He did want me to go back with him, so I went. On the way down the hall, the hygenist (who had never worked with Riley before) told me that on the way back to the room, Riley had advocated for herself saying, “I have autism, and I’m really sensitive so I’m going to ask you to be gentle.”

I am so glad she told me Riley said that. I felt giddy over it. She’s asked the assistants at the orthodontist’s to be gentle before, but never explained the whole thing. Never without her mom.

I thanked her and then told the hygienist about Seth’s tics, made sure she knew he can’t help it, yada, yada.

All was well and then, she tried to give him mint mouth wash. Little man don’t do mint. He hates it, says it burns his mouth. He stopped her and asked for another flavor and she said, sure. Evidently, Seth advocates for himself too.

It was awesome telling HT. He had the exact same proud, thrilled, oh-my-God-how-far-we’ve-come reaction. We love us some Riley. And Seth is the coolest as well.

It has been an extremely stressful time lately, getting the house ready to sell. I’ve been out of my mind with the pressure of getting it all done. But this, has made my day.

I can’t stop smiling.

*Sometime soon I’ll tell you about my talk at the dental school last Friday, a result of the post linked to above. The short story is they were nice and it went well.

Wil of God

 

 

 

 

 

 

 

 

 

 

 

 

 

Today is the day!

Carrie Wilson Link’s long awaited book, Wil of God, is released.

“Wil of God is the story of a tightly wound special needs mother who comes undone, puts herself back together, and falls in love with her imperfect life.”

That’s a blurb from someone in the know.

Good blurb, right?

Oh, okay…it’s my blurb. I admit it.

I met Carrie at a writing workshop years ago. We bonded over our special needs parent status. Our children are very different and require completely different parenting but there was an immediate respect between us about the sacredness of our unexpected vocations.

I’ve had the honor to bear witness to the unfolding of Carrie’s story (at least the last seven years of it), and I’ve read her book in many of its phases. It is delightful. I am so very deeply and profoundly happy for her as Wil of God launches. It is a story that will lift you up, and make you better for having read it.

Carrie is a beautiful writer. A steadfast and devoted mother. A spiritual seeker. A vital thread in her community. She is a teacher to her core.

To paraphrase her son Wil, she is, “the right kind of woman.”

She’s also the right kind of friend.

Congratulations Care!

May your book find it’s way into the hands of all who will appreciate it. May there be many, many, many who open to receive Wil of God.

 

*For more on Carrie and Wil of God, visit her blog, here.

Dentists and Autism

Just before leaving to pick up Seth at school yesterday, I got a reminder in the mail from our most recent dentist. It’s time for cleanings. In the car, I found myself getting more and more agitated.

This is the dentist we switched to, after the last dentist. Before we saw this newest dentist for the first time I called ahead to pre-pave. To let them know about Riley’s anxiety. I assured them it would most likely be fine, she’s doing so well, but I felt it would be better for them to at least be aware.

In the car Riley said she was nervous. I assured her it was just a cleaning. I told her she’d had plenty of cleanings by now, and it would be okay. In the waiting room, the assistant came to call her back. I asked, “Riley, do you want me to come with you or stay in the waiting room?” I’d always come with her before, but she’s getting older. She grabbed my hand and said, “I want you to come.”

At this point, the dental assistant attempted very strongly to intercept me, and take Riley back by herself. We went around at least three times with it, and she was quite firm. You could tell she’d been sent out to do the dirty work. Like she was going to be in trouble or something if I waltzed back there with my kid. I told her I wanted to see the dentist and she put me in a little side room, (with Riley), to wait. At this point, not wanting to be the cause of any strife, Riley started ramping up, pleading, “It’s okay Mom. I’ll go by myself. It’s okay.”

I told her, “No it isn’t okay.”

If my child on the autism spectrum has a problem with anxiety, and it will reassure her to have her mother in the room for a cleaning, then what is the big deal? Why do dentists assume that they know better than parents of children with autism? How much training do they actually have with kids on the spectrum? I’m betting none. Why do they assume they know what to do if they run into a problem? Why do they assume we are the problem?

Dental visits are anxiety provoking for many people, and for Riley even more so. You can’t minimize her sensory issues. She is doing so well, and she puts on a brave face, but hold her hand walking down a street and you realize how truly sensitive she still is. She flinches and squeezes your hand at noises that wouldn’t phase most of us. In the car, she screams if I hit the brakes unexpectedly. Her panic response goes from zero to 100 in an instant.

In all likelihood her cleaning would be fine, but there was a chance it wouldn’t be. There was a chance the dentist wouldn’t take her sensory issues into account. And if not, there was a chance he’d be the trigger of a full scale scene. And there is a chance he would then shame her and blame her for her reaction to his own insensitivity. Ask me how I know. This happened with one of the assistants at the orthodontist’s just a few months ago. It’s never ending, the need for advocacy, and until I am clear she can do it on her own, I will be with her, if she wants me to be.

It took years of hard work to get her in the dentist’s chair. I wonder if this dentist realized that? I wonder if he realized how punched-in-the-gut I’ve felt nearly every time I’ve had to deal with a member of his profession?

In the end, the dentist never came into the “intimidation room” to talk with me. We were whisked back. I sat in the corner unobtrusively, while Riley got her teeth cleaned, without incident. I did not hover over her. I did not make it worse. I looked out the window, and held space for my girl, as she demonstrated yet another feat of bravery. Letting professionals she’d never met poke around in her mouth, bright lights, sounds, uncomfortable sensations. She handled it all.

When I got home I went into the privacy of my bedroom and cried. It is so tiring to be treated like this, and when it happens it brings up every other time it’s happened.

And then, like we autism parents do, I got on with things.

The reminder post card is serving to mark my page in a book I’m currently reading. It’s about the brain and the different areas of it and how they effect various learning disabilities and how we can strengthen areas of weakness. It’s what I do. I study. I help my kids.

As I turn the post card with the reminder over and look at it, I think about all this. It occurs to me Cleveland has a dental school. I wonder if somehow I could arrange to talk with the up-and-coming students. I wonder if in some small way, I can help turn this around.

Safety

Seth could not sleep last night.

When he re-entered school this year after being homeschooled for two, the biggest stress for him was not the academic work, not the social aspects of making new friends, but the fire and lock down drills. Just the drills.

We addressed his fears with the school staff. We’ve taken some measures to help him through. His teacher has a few tricks up her sleeve to help in the moment. He’s even seen a counselor who gave him calming techniques to use during drills, such was his anxiety. He was starting to handle them much better.

Then Friday happened at Sandy Hook Elementary.

So it was after 10:00 last night and he was still not asleep. I came in and laid down with him and ran my fingers through his hair.

“What if a lock-down happens and I’m in the bathroom and I’m locked out of my class?”  Visions of being on his own in the hall with a gunman on the loose would not leave his mind.

I tried explaining that his chances of being harmed by an intruder at school were very very slim. “Seth, we have a better chance of winning the lottery,” I said. “Think of all the millions of school children in our country, who were not harmed on Friday. (I know that’s not really true, we were all harmed).

The numbers are too big. He can’t fathom what I am telling him.

So I tried a different tactic. “If that did happen, if a true lock-down happened and you weren’t in your class, you could hide under the stairs. Or you could run through the exit just past the stairwell. Don’t wait for a teacher’s permission. If you have an out, you take it. You go.  You have inner guidance. You would know what to do.”

“But what if the gunman is in the stair well?”

Breathe, mama. I check in with my heart and ask for words.

“Seth. I believe we all choose when to come into this life, and when to exit. I believe those very special children, those brave teachers, on a soul level, came to change the world. I believe if it is your time to go, you will go, and no heroic measures will save you, and if it is not your time to go, no human act can change that. No one is more powerful than God.”

He hugged me.

“Because that’s what we’re talking about here, right? Fear of death.”

He nodded, “And fear of getting shot.”

I continued rubbing his hair, and we talked about the body’s adrenaline and the natural anesthesia that happens when we are in crises, and how, often times, people don’t even feel pain until hours after a traumatic event. Those children probably felt no pain. We talked about how when I hit a deer with my car, there was no time to feel fear. How time slowed down and it was all surreal. How our amazing bodies have ways to protect us from trauma. Physically and emotionally.

We talked about how we’re all going to die. Every one of us. Some people live long lives. Some people live short lives. All lives are meaningful. All of them perfect for what the soul wanted to accomplish. I believe this.

“But if I died, I’d never see you again,” he blinked his eyes hard, fighting back tears.

We talked about a guy I know, whose teenage son died. This man claimed he felt so close to his son now. Where there was friction between them, only love remained. He talked with his son all the time. He felt him, ever near.

That’s the thing about death, isn’t it? We don’t know, none of us really know. But truly, in my heart, I believe those children and those grown ups who were killed Friday, will never be far from their loved ones. Ever near. Yes.

We talked about love, and how nothing can take it away. Not even death. He is in his dad and his sister and me. We are in him. He is loved. God loves him. Love does not die.

Love is his only true safety.

This morning, our brave boy got out of the car, and hauled his backpack over his shoulder. He looked back at his sister and me in the car, and waved. Then did it again. And again. All the way down the long sidewalk and into the building, to school.

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.

Calming Tourette’s With Dental Appliances

I had Riley at the orthodontist’s today and we got to talking about Seth and his tics. The doctor told me about work being done to help patients with Tourette’s using dental appliances to stop the tics.

Amazing. Read more about it here.

I don’t know if something like this would help in the case of a PANDAS flare, but it is worth looking into.

Seth just watched the video and said, “I know how he feels.”

I know you do buddy. I know.

She Can Do Anything!

In June, I posted this, about Riley facing her fear of deep water and also conquering the dratted climbing structure that had been the bane of our existence for years.

In the post I asked, “What’s next, riding a bike?”

Well.

Yeah.

 

Don’t mind if she do.

I came home from chorus yesterday to a girl who could ride a bike. Easy.

She’d been a bike rider for oh, say, five hours when she said, “Now I can do a triathlon someday.”

And her daddy and I said, “Baby, yes you can!”

Barbara Azzara,Teaching Excellence Not Perfection

A little background. Probably twenty years ago, my friend Anna mentioned something casually in conversation about Emmanuel’s Book: A Manual for Living Comfortably in the Cosmos. This was when I was living in the DC area. I filed it away in my brain because the concept she presented, or quote, or whatever it was, was quite beautiful.

Not long after, I came across the book in a used book store and bought it. It is a lovely book. It is one you can pick up, read one page, and feel lighter. It covers huge concepts in few words. I love it. I have kept my copy all these years. A few months back, I read it again and was delighted by it again. I checked to see if there was an author website. There was. There were links. One of the links was to Barbara Azzara’s website. She’s a friend of the author. I signed up for her monthly newsletter and have been very inspired by her words. I sent her an e-mail, thanking her for her newsletter. She responded. We’ve emailed back and forth some. I don’t know her well but she is a very loving person. That much I know already.

In last month’s newsletter she asked four questions. I answered them and learned some things about myself. I’m going to include the exercise and my responses here which is a little scary because it’s so personal. I wrote this last month and put it away for a while to let it simmer. To make sure it is something I really feel comfortable sharing. Fear would have me want to keep it locked away to protect myself further.

But I had a little talk with fear yesterday, and turns out while fear might mean well, (and that’s a big might) it’s basically full of shit.

This exercise helped me and maybe it will help someone else. I feel whenever we learn and share, it is a good thing. So here I go…it’s kind of stream of consciousness, but you’ll get the gist. I don’t know why my responses are all in caps, but I promise I’m not yelling. I’m just too lazy busy to go back and change them.

1. Name your images, and understand and name: “what is the fear and the defensive behavior that these circumstances created. ”  Another way of saying it is:  are you willing to ask yourself what is the belief that my ego is built upon?  (I must be agreed with, I must never be criticised, etc.)  Done in depth, this is a freeing exploration.

I MUST BE THE PERFECT MOTHER

2. What are your self judgments and your faults, that have created your idealized self image?  Another way of saying this is:  What about you will you “not accept” so that you will alter yourself and pretend to be other then you are.  You cannot be vulnerable or transparent if you continue to NOT accept your own “imperfections”. List these self limiting values, and see how you have distorted them into “idealization”.  (I must always be “understood.” I must always be generous of my time, money etc.)

I CANNOT ACCEPT THAT I AM OVERWHELMED. I AM LOST. I OFTEN FEEL LIKE I AM BARELY HOLDING MY HEAD ABOVE WATER TRYING TO PARENT THESE KIDS.

I FEEL LIKE I MUST ALWAYS BE PERFECT AT THIS BECAUSE I SUFFERED SO MUCH AS A CHILD AND CANNOT BEAR THE THOUGHT OF MY CHILDREN SUFFERING.

I MUST FIND ALL THE ANSWERS. I MUST FIND THE RIGHT SCHOOLS, DOCTORS, I MUST STUDY STUDY STUDY TO FIND WHAT THEY NEED FOR MEDICAL TREATMENT. I MUST DO IT ALL MYSELF BECAUSE NO ONE ELSE IS GOING TO FIGURE IT OUT FOR ME AND THEY NEED HELP. I HAVE TO FIGURE IT OUT. I FEAR LONG TERM EFFECTS. IT’S ALL ON ME. I MUST NEVER LOSE MY TEMPER. I MUST ALWAYS SAY THE RIGHT THING. I MUST PREPAVE EVERY SITUATION AND ANTICIPATE EVERY SCENARIO. I MUST MAKE ALL THE FOOD BY SCRATCH. I MUST PROTECT THEM AT EVERY TURN. I MUST DO IT NOW OR THEY WILL SUFFER MORE LATER. I MUST PREVENT THEIR SUFFERING.

3. Are you willing to be real, (What does this mean to you?) and then are you willing to risk being seen for all of who you are?  Are you willing to accept your own imperfections and not project them onto others.  Are you willing to take the time to write about this?  ( ex:  I am angry, but rather than admit this, I will tell you that you are angry.) 

I CANNOT TOLERATE EVEN A WHIFF OF JUDGEMENT ABOUT MY PARENTING. OVER THE YEARS, SOME HAVE BLATENTLY JUDGED. OTHERS HAVE OFFERED JUDGEMENT THINLY VEILED AS “CONCERN” OR “SUGGESTIONS.” OTHERS, STONE COLD SILENCE WHEN I’VE BEEN BRAVE ENOUGH TO BE HONEST ABOUT HOW BAD IT’S BEEN SOMETIMES. AND IT FELT LIKE A BRICK ON MY BACK THAT WOULD SINK ME. IT FELT MEAN. IT FELT WRONG TOO BECAUSE THEY DID NOT LIVE MY LIFE, OR KNOW MY CHILDREN OR KNOW WHAT THEY NEED OR APPRECIATE HOW HARD I AM ALWAYS TRYING.

4. Are you willing to do this as a spiritual practice and devote yourself to “excellence” not perfection?  Without this commitment to go beyond your frustration, without this commitment to go beyond your fear of rejection, your fear of exposure or criticism,  and without this ability to be objective, first with yourself, and then with other, you cannot be present in your heart, and therefore you will not be able to connect and to walk with another in true open heartedness. This is the way of Leadership, and this is the path of intimacy.

I HOPE TO BE ABLE TO HEAR SOMEONE’S CRITICISM. I HOPE TO BE CONFIDENT ENOUGH IN MY PARENTING THAT I CAN LOOK AT ANY CRITICISM CURIOUSLY. WHAT THEY ARE CRITICIZING ABOUT ME IS A FEAR THEY HAVE THEMSELVES ABOUT WHAT THEY DID OR DIDN’T DO OR WHAT THEY MIGHT DO. WHAT THEY THINK THEY KNOW ABOUT ME, IS ONLY PROJECTION. I AM STRONG ENOUGH TO ENDURE ANOTHER’S CRITICISM. IT DOESN’T MAKE IT TRUE. THOUGH IT MIGHT BE. I’M STRONG ENOUGH TO LOOK AT WHAT THEY ARE SAYING, WEIGH IT CAREFULLY AND DECIDE EITHER TO ACCEPT IT AND WORK ON IT OR TO REJECT IT AS INVALID PERCEPTION AND LET IT GO. I DON’T NEED TO LET IT THROW ME AND GET ALL UPSET ABOUT IT. I DON’T NEED TO PROVE ANYTHING.

I DON’T NEED TO BE PERFECT. I AM NOT PERFECT. I DON’T NEED TO BE SEEN AS PERFECT.

I CAN MAKE MISTAKES. I AM FALLIBLE. I AM HUMAN.

I AM VERY UNCOMFORTABLE WITH PEOPLE NOT LIKING ME. I DON’T HAVE TO BE LIKED. I DON’T HAVE TO BE APPROVED OF. RILEY HAD A BAD EXPERIENCE AT THE ORTHODONTIST RECENTLY, AND I STOOD UP FOR HER, BUT THEN WORRIED THE DOCTOR AND STAFF WOULD BE MAD AT ME. IT ISN’T MY JOB NOT TO RUFFLE ANYONE’S FEATHERS. IT IS MY JOB TO ADVOCATE FOR MY CHILD.

IT ISN’T MY WORK TO MAKE THE WORLD APPROVE OF ME. IT IS MY WORK TO BE ME.

I AM A GOOD MOTHER.

I AM NOT A PERFECT MOTHER. MY CHILDREN WILL SURVIVE MY IMPERFECTIONS.

I AM AN EXCELLENT MOTHER.

I AM NOT A PERFECT MOTHER.

I AM ENOUGH.

 

*If you would like to recieve Barbara’s newsletter aka Love Letters, click here and scroll to the bottom of the page to sign up.

**The Alden Nowlan quote on my sidebar came to me courtesy of Barbara too!

We Might Need to Retire the Wig

For the second day in a row, Riley has come home from school, finished her snack and got cracking on her homework. It’s as if she enjoys it. She’s so stoked to do it. She loves crossing all the things off the list. She loves telling me where I have to sign things. She’s just thriving on the structure and organization. The pacing at this school seems just right. She is happy.

I have not had time to mention a little story about her orientation the weekend before school started. She was so nervous walking in she couldn’t let go of my hand. We sat in the gym/auditorium and there was a speech by the principal and then the new students went off with kids who already attend the school(ambassadors) for a tour. Riley got up and went with her ambassador no problem. Then Riley came back, and took us to her class.

As we stood chatting with her new teachers, a girl and her parents came into the room. The girl looked like a flower at night, all closed in on herself. Eyes down. Shoudlers slumped forward.  Riley saw her and bounced over,

“Hi! My name is Riley. I’m new here too.”

She waited a beat. The girl didn’t look up. She didn’t utter a word.

Riley said, “I can see you’re really nervous. I’m nervous too.”

Again, no outward response from the girl. She seemed so afraid.

Riley smiled at her and said, “I can see you’re overwhelmed, so I’m going to back off, but I look forward to being in class with you.”

The girls parents looked at us.  The mother, appearing amazed asked, “Where do you live?”

You can’t even imagine how full my heart was, watching my girl navigate this exchange.

When we pulled her out of school two and a half years ago it was not well thought out. It was instinct. School had not been going well and she was beginning to internalize that she was the problem. On a gut level I knew she could always make up whatever academics she missed at home, but hearts are not easily repaired. We were protecting her heart.

In my parenting journey, I’ve never had  the luxury of feeling like I know what I’m doing. Of knowing I’m a good mom. The task at hand has been daunting. There are no experts showing me the way. My kids are so different and you can’t measure anything against how anyone else is doing anything. But I feel like we did the right thing. I feel like we pulled her out at the right time, and we put her back in at the right time. She’s just started 7th grade and is attending a private school for kids with learning differences.

If you click on the glorious photo of Hot Toddy above, it takes you to a blog post three years ago when homework was a blood bath. Riley spent so much energy just surviving each day, she was exhausted at home. Homework that should have been simple took hours to complete. Her darling daddy sometimes resorted to the wig to make her laugh and snap her out of a meltdown.

I’ll never tire of the photo, but I’m happy to retire the wig.

 

100% Huggable

I am feeling moved to write about the Berard Auditory Integration Therapy Riley received when she was little. When I have those little winks to share something, I tend to think there is a reason.

This little baby was debilitated by certain noises. Her life sucked because of it. We all walked on eggshells, waiting for the next auditory assault (a sneeze, a baby crying, etc.) and the horrifying screams that would come as she writhed in pain.

We did Berard training at McLean Speech and Language in the DC area. They know what they are doing. Unfortunately, not every practitioner does. She had two 10-day rounds. It cost us a fortune. Big gains each time, not only in reduced sound sensitivity, but also in balance.

In the photo above, Riley is wearing her then favorite shirt. It had a Care Bear on it and said 100% Huggable. At the time Riley would allow hugs but had never hugged anyone on her own initiative. The third day into the therapy, Riley went in the door of McLean Speech and Language and walked up to Susan Glaub, the therapist that was doing the treatment, and hugged her around the legs. She also began to wake up from sleep without screaming, which was a first.

The woman that brought Berard Auditory Integration Training to the US is Annabel Stehli. Her daughter had autism, and then she didn’t. She credits the auditory training for the change. Back when Riley was tiny and suffering, I found her books so inspiring. One is titled Dancing in the Rain. Another is The Sound of a Miracle.  I didn’t know she had a third book out in 2010, The Sound of Falling Snow. It is about children who have recovered from autism. I plan on getting it.

Maybe your child is suffering from sound sensitivity. Maybe you know someone who needs help? I can’t say it will work for you, but it might. I know at least two adults that did the therapy and felt it helped them. It was worth it for us. It was a big deal and vastly improved the quality of Riley’s life. Sound doesn’t bother her any more.

And there you have it.

BTW….she’s 12 now and still 100% huggable. Always has been, always will be.

The Call

Today is the first day of summer camp for the kids. I had an appointment for an educational evaluation for Riley, so Todd dropped them off. He said our girl bopped right in, introduced herself to new counselors, greeted ones she knew  like they were old friends, initiated conversation, and was 100% bubbly tween adorable.

Walking in the house from my appointment he tells me all this, and we sit at the kitchen table, chit-chatting happily about the morning.

Todd goes up to take a shower (he works evening today) and the phone rings. Caller ID says it’s the camp.

The wind is sucked out of my sails. Son of a bitch.

Todd sees it on the caller ID on the phone upstairs. He runs downstairs to listen in as I answer the phone.

“We got too cocky,” is what he said he was thinking.

It’s the camp’s administrative office. They overcharged us by $94.00 and would it be okay if they wrote us a check, because they delete the credit card info after transactions occur and no longer have it on file to credit our account.

The lady on the line has no idea the heart attack she has just induced.

Yes, please, send us $94.00.

That would be great.

I hang up.

We meet each others eyes and release our breath.

What is Happening?

A little boy, one we don’t know, swam over to Riley as she was sitting on the edge of the pool, tentatively easing her way into the water. He was about ten. As he approached her he asked, with a glint of mean in his eye, “Do you want to have a water fight?”

She replied sweetly, “No thank you,” and as she said it I noted him drawing his hand back ready to just knock her flat with a big wave. At long last she finally took her feet off the bottom of the pool this week. Something like this could really set her back. I stood up behind her and gave him “the look” which made him instantly back off and slink away. Seriously, you do not want to be on the receiving end of my “look.” It’ll blow your hair back. Riley missed the whole exchange.

A chubby little girl we’d never met before, we’ll call her Emmie, she wanted to hang out with us. There is always one. A lonely neglected clinger-on. She hinted about how hungry she was and how badly she wanted something from the concession stand. My kids are secondary to kids like this. What they want is attention from me. They are starving for it.

Seth jumped in and immediately joined a dozen kids playing Marco polo. Easy, peasy.

Riley was mad when treading water didn’t come easily. Just because she does something once, doesn’t mean she can do it the next time. But she did eventually get those feet off the bottom of the pool again. And she put her head under water a few times, without plugging her nose. This is a huge victory. I spent a lot of time gliding her through the water, helping her get the feeling of swimming. Another boy about ten years old swam up to us and asked incredulously,

“Can’t she swim?”

I told him, “She’s learning. She’s getting there,” and then moved away from him as quickly as I could, hoping Riley wouldn’t ask to get out of the pool due to embarrassment. Thankfully, she didn’t.

I watched as the mean boy who had first approached Riley slinked up to a kid who was resting, hanging on the edge of the pool. For no reason, he full on body slammed him from behind. When the kid turned around to confront him the mean boy immediately said, “Ooops! Are you okay?” His feigning of concern disarmed the other boy and he let it go. Total manipulation. No parents in sight for either of them.

Another boy about twelve was in charge of three toddlers. And I have to say he was doing an awesome job. He took each one into the pool while the other two sat in a chair. He glided them through the water like I did my girl. They really trusted him. He fed them lunch, and then at one point commanded them to stay in the chair, while he jumped in the water and spent a brief moment of play with his friends. Where was his mother? Whose babies were these? Why was this boy thrust into this role?

There were at least three other kids with autism there, at that hour, that day. Any pool America. And those are just the ones that were easily detectable. Toe walking, hand flapping, etc.

A little girl, about five walked in front of my chair as I was packing up to leave. My kids stood shivering in towels, ready to go. This little girl had the braids Riley has coveted since we moved to our very diverse neighborhood. She had the whole head bob going on, lots of sass, and as she passed in front of me she said to her friend, in a voice that was obviously picked up from a much older relative,

“Girl, what is happening in this world?” She shook her head solemnly which was adorable for a five year old and said again,

“What is happening?”

Thinking about the events of the day, my eyes came to rest on a little boy standing in the pool shaking his head back and forth, back and forth, stim, stim, stimming.

I have to admit, I was wondering the same thing.

Look at her go!

It’s been a big week for Riley.

Over the weekend she had four girls sleep over. It went off without a hitch. Total success. Yesterday, our second day at the public pool this season, she took both feet off the bottom of the pool, and was able to tread water. No floats. No life jacket. No support. No panic. I’m not saying she can swim, be she was able to tread water for the first time in her life. She’s on her way!

And today at the park, she climbed to the very top of the play structure that has been one of the biggest nightmares for her. It was the first time she ever made it anywhere near the top.

She talked to herself the whole time. “I can do this. I can do this.”

What’s next? Riding a bike?

She’s worked so hard to be where she is today. We take nothing for granted. It’s been heartbreaking at times watching my baby struggle, but nothing beats the feeling I get watching her fly.

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.

We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.

I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.

I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.

While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.

She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).

When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”

And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.

Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.

I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.

‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.

Resources for you if you are interested in being more informed:  

*MMR Ruling/Daily Mail

*Evidence of Harm, David Kirby

*Healing the New Childhood Epidemics, Kenneth Bock

*http://www.safeminds.org/government-affairs/foia/simpsonwood.html

*http://www.rescuepost.com/files/prenatal-thimerosal-and-neurotransmitter-imbalances-in-rats.pdf

 

*http://sanevax.org/adverse-events-following-12-and-18-month-vaccinations-a-population-based-self-controlled-case-series-analysis/

* http://www.ncbi.nlm.nih.gov/pubmed/16988466

*What Your Doctor May Not Tell You About Children’s Vaccinations

*Vaccine Epidemic

*http://sanevax.org/

* Hannah Poling Case/CBS News

*http://www.ageofautism.com/science/