Is Your Kid the Welcoming Kind?

Cleveland Circle of Friends (2009)

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

“Why doesn’t anyone like me?”

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

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

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

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

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

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

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

But it can.

It also scars their mother.

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

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

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

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

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

Figure Eight

Despite my tongue in cheek piece in The Imperfect Parent a few years back, I’d never cursed in front of my children for the first ten years of parenting, and even now it is a rare occurence. With Riley’s low frustration tolerance when she was little, I thought it would be a very bad idea for her to have those juicy words in her tool belt.  That was my main motivation not to. I enjoy swearing. I do. It rolls off the tongue naturally for me, like an accent. The more relaxed I am around you, the more you’ll hear it. Guard down. Swearing up.

Riley does not swear and doesn’t feel she ever will. Seth is undecided. They still think “hell” and “damn” are potent words.

So anyway, the first day we had to be at Seth’s school I got lost. I was using my GPS, and had no physical map. The GPS hit a glitch, and kept taking me in circles, back and forth through a toll road, four times. A figure eight, with me forking over money each time. Lost and late. And hot, because the AC in our car was on its way to conking out completely.

Then, a car barreled down on me (aggressive drivers here are a topic for another day) and didn’t let me over to get off the exit I needed, and I screamed the F word. Twice.

This week whenever we get to that stretch of  highway, the one where I need to get over and get off that tricky exit, Seth has been saying, “Stay left Mom! Stay left!” And I’ve been beating myself up over it because I feel like I traumatized him when I swore that day. Like, he’s terrified I’ll miss the exit again.

Oh I’m good at beating myself up. The best.

But yesterday, on my way to get the kids, 1.5 weeks in, I know the route. I wasn’t stressing. I’ve got this. And then I came upon the exit, and the guilt washed over me again, and then…. I remembered.

When I swore, when I said the F word twice, Riley, in the back seat, sucked in her breath, and in the next instant she took Seth’s hand and said, “Let’s pray for Mom.”

She didn’t say, “What a loser Mom is for cursing.”

She didn’t say, “I’m terrified of Mom.”

She did what I taught her. When you see someone lost and hurting and out of their mind, you hold space for them. You pray.

I taught her that. And if I taught her that, I must not be a loser.

I taught her that, but I also learned it from her. She was such a good and beautiful and sweet little girl, and then sometimes she was overwhelmed and out of her mind. Pushing back never helped. Being punitive never helped. Loving her did.

I loved her.

She loved me.

I love her.

She loves me.

Back and forth we go.

Figure eight, figure eight.

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.

What a child with Asperger’s and her sibling would like you to know…

Yesterday I posted this on Facebook:

“There are reports coming out that the CT school shooter had Asperger’s. Please on behalf of my sweet girl and others like her, PLEASE correct and stand up to any ignorance you see on this. My child with Asperger’s would rather die herself than harm another soul.”

We told the kids about the shootings yesterday. They were obviously sad about it and had a lot of questions, most of them pertaining to their own safety, which is pretty normal for kids.

Today we talked with Riley (12) and Seth (10) about the shooter allegedly being diagnosed with Asperger’s. Riley immediately felt fear that people would think every person with Asperger’s was bad. Seth says he felt scared for Riley.

This is what Riley would like you to know:

“Note to everybody, I am not a bad person. Just because that man with Asperger’s shot those people doesn’t mean that I’m bad. Just like when the Japanese bombed Pearl Harbor everyone thought every Asian person was bad but they’re not. Consider what my mom said about this, and it’s true that I would rather die than hurt somebody.”

Seth says,

“Not all people with Asperger’s are bad, and most are really nice.  I know a lot of them that are really sweet. My sister is really nice and she would never harm anybody. I’ve never met a mean person with Asperger’s.”

We are so sorry for all the people who lost their loved ones.


Taking Perspective

Riley’s bus was late bringing her home yesterday. It’s actually a van. For some reason two vans had to be combined together. Kids that don’t usually ride together had to, and it was crowded. There was a little girl on the van. A little girl very much like Riley was as a little girl. She couldn’t deal with the change. She wanted to sit by someone particular and it didn’t work out the way she wanted it to. She was no doubt tired from a long day at school.

She melted.

For thirty solid minutes she screamed as if someone were killing her. Any attempts the other kids made to talk her through made it worse.

Riley got off the van and came into the house saying, “Mom. Dad. I think I know what you were going through when I was little.”

She told us the whole story.

“I felt sorry for her but I really just wanted her to shut up. I was getting a headache.”

We talked about how it must have felt for the little girl to have everything be different, and to be tired and confused. To feel crowded and upset. To have people keep trying to talk to her when she just needed space.

“I’m so sorry I put you through that,” she said.

We told her she had nothing to apologize about. She was little and she didn’t feel good. And yes, sometimes it was maddening, but we understood, and we knew she was doing her best. We knew what a good kid she was, how sweet she was, how hard she always tries. And yes, on rare occasion because we ourselves have been limited, or tired, or confused and overwhelmed, we might not have handled it as well as we could have, but we have loved her every second of her life even if we weren’t dealing well with her at the time.

It was interesting to see her apply such perspective. It made me feel good. Not for her to feel guilty, but for her to acknowledge how the screaming child affected her nervous system, and to then place herself in our shoes.

I have carried so much guilt over times when I have not handled Riley’s meltdowns well. Most of the time I have and do handle things well, but sometimes I have not. And I fear those are going to be the things she will remember. Interestingly HT carries no such guilt. Just last week I pulled into the driveway and heard him screaming at her (another homework battle)all the way from outside in the driveway. He was over it in an hour. He’d let it go.

Later I asked him, not accusingly but just curiously…how that works.

“You’re okay with the fact that you were screaming at her?”

He shrugged, “I don’t like that I screamed at her, but she was exasperating.”

End of story.

That’s the kind of thing I will kick myself over for months or even years. I don’t get it. Is it a difference between men and women? Is it just me and my crazy desire to do everything, including motherhood perfectly? Or is he a rat bastard? Or does he merely have a healthier acceptance of his being human and all?

Anyway…back to Riley. This ability to step into our shoes, even for thirty minutes, makes me hopeful. It makes me feel like she will look back at her childhood and understand her parents in all their imperfection.

And love us anyway.

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.

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.


On the Mend

I have never seen Todd sick like he was on Friday. He looked frail and small. He is stoic. He never gets sick. After eight days of being sick, he agreed to go to the ER, and when he agreed to go, my heart sank. For him to agree, it had to be bad. Todd was in the ER for seven hours Friday before being admitted to a room.

The doctor in the ER seemed nice but after running tests he came in and said Todd’s liver enzymes were elevated and casually called it “Hepatitis.” Later he would mention that hepatitis is just a technical name for inflammation of the liver and could be for any number of reasons, but it was kind of a jackass thing to say because to most people Hepatitis means something entirely different and super scary. It’s not a term to throw around lightly. Todd’s grandfather died of liver cancer and I saw fear in Todd’s eyes as soon as his liver was mentioned.

They hung one bag of IV fluid in the ER but not another one for the next six hours. He’d had near constant diarrhea for over a week and had been vomiting too. He needed fluids.

At home, I’d left Riley in charge, and I ended up being gone for four hours. When I got back I found  she had sequestered herself in her bedroom and obsessively worked on her animation films, so Seth was basically alone for four hours by himself. She came out of her room bleary eyed, since no one had forced her to take a break. She hadn’t even checked on her brother. Later I would learn she’d been coping the best she could, diving into her area of interest, but it appeared she was just oblivious.

I fed them dinner, and my friend Kirsten took the kids for a couple of hours so I could go back to the hospital.

When Todd finally got admitted to his room (seven hours in) the nurse rolled in her computer. Asked a bunch of questions and typed in his responses. She took his pulse for ten seconds. Listened to his heart for maybe ten seconds. Sent an aide in to do his vitals. The RN did not spend any time actually looking at him. Her focus was on her computer. She didn’t note his pallor. She wasn’t present. Todd never complains. How could I trust him to be cared for there? But I needed to get home.

The next day, Saturday, I could not go see Todd in the hospital because Seth had fallen ill. I feared he had come down with the same thing Todd had, and it scared me because he is so vulnerable with his PANDAS/autoimmune deficiency and he’s just 60 pounds. He can’t afford to lose fluid like Todd was losing it. By Saturday evening Seth was throwing up and had liquid diarrhea. Todd was in the hospital and no one was giving us any explanation as to what was wrong with him. I was near panic. I ran to CVS to get some supplies for Seth and was in tears in the check out line because it was going slow and my baby was sick, and the kids were home by themselves. It took less than ten minutes, but it wasn’t right. I felt so very scared and alone.

Later that night, I went into the basement to put some of Seth’s soiled clothes in the laundry and heard Riley crying. Where was she? Surely not down there, in the dank spider filled cellar that is only for laundry and kitty litter boxes and storage?

She was sitting in the dark, hands in her face, sobbing. I didn’t have time for this, Seth was two stories up, puking.

“I’m so scared! What if you get sick next and I have to take care of everyone? I don’t know what to do! I don’t know what to do! Dad’s in the hospital and Seth is so sick! I don’t know what to do!”

I could hear Seth retching, sound traveling down the laundry shoot.

I dragged her by the hand with me up the flights of stairs, reassuring her I wasn’t going to get sick(I hoped). Daddy was fine, he was being well taken care of(even though I questioned that). She was too far gone to wash her face and I had to do that and brush her teeth for her. I popped a melatonin in her mouth, stuck her in her bed, shut her door and faced the night with Seth. I got teary on the phone with Todd, and then kicked myself for it. He felt helpless enough as it was. Last thing he needed was to worry about us at home.

Seth slept in my bed and pooped himself twice in his sleep before he could make it to the bathroom. We were up all night. I had the bag packed and hourly weighed the decision to take him to the ER too. My only solace was if this was a stomach bug, it wasn’t something like liver cancer for Todd. Liver cancer isn’t contagious.

Riley woke fresh as a daisy at 7AM Sunday and allowed the dogs to tramp into the bedroom waking us up, when we’d had about two hours of sleep. She didn’t mean to wake us, but didn’t mean not to. She didn’t think to make them come downstairs with her. It’s never malicious with her.

Todd came home late Sunday afternoon. The antibiotics worked. His liver enzymes are down. He does not have hepatitis. It appears to have been some sort of bacterial intestinal bug. Seth seems to be clearing whatever it was, aided by my own vigilant application of non-FDA approved bug fighting remedies at home.

Monday by coincidence the kids had physicals with a new pediatrician. Riley needed the forms for school. I dreaded the appt. because I dreaded the vaccine interrogation. This doctor started in about them, warning me that if a measles outbreak happened the school could kick Riley out for a whole year, but otherwise backed off respectfully. He also shared an anecdote about one of his patients with PANDAS who was getting IVIG at another practice. A lot of immunologists use vaccines to determine whether the IVIG is working. They give IVIG, then give the pneumovax vaccine and measure the body’s response to it. And this doc said one PANDAS patient he knows personally had a severe reaction to the vaccine they gave to measure the IVIG effectiveness and has regressed and never recovered. He actually admitted that to me. Which speaks to an open mind at least.

We would never agree to that kind of vaccine/response experiment with Seth, we know too much, but it is standard practice for most immunologists. They just truly believe that vaccines are 100% benign. They can’t even use common sense to fathom how injecting something into an already weak immune system might wreak havoc on it.

The thought of this patient with PANDAS, getting that vaccine and having a reaction to it, which he never recovered from, made me ill. That poor child. Those poor parents. Heap it onto the last two weeks I’ve had and I was done for. I feel PTSD hyper-viligance about the health of my family. I’m feeling angry at mainstream medicine. I’m questioning how a society can be so asleep and keep allowing its children to be hurt. I’m kind of reaching around for it but appear to have misplaced my faith.

Sunday, after picking Todd up at the hospital, I took a nap with Seth for over two hours. It’s the first snuggled-up nap we’ve had together since he was a toddler. He doesn’t usually slow down enough for that kind of thing. I ran my fingers through his thick blond hair. I studied his hands, still so small, his fingernails. His cheeks. I laid my head on his back and listened to him breathe. I thanked God for him, and hoped, hoped, hoped he was over this illness.

Monday except for the doctor appt. we all just laid around, except for Riley who worked on her films in her room.

Today it appears whatever hit my boys is on its way out. Seth is still weak and nauseous and nothing tastes good, but no vomiting or diarrhea today. Same for Todd. They appear to be on the mend.

I am exhausted.

Thank you to friends Betsy, Anna, Kirsten, Ruth, my mom, my sister, Todd’s parents, his brother, who checked in with us to see how we were doing. Thanks to all the people who emailed and or/left comments here and on FB and to all the people who didn’t leave comments but who wished us well or sent out a prayer for us. One woman I barely know has taken me under her angel wing. I’ll introduce you to her in another post. Carrie Link talked me straight off the ledge lighting candles left and right all the way in Portland, Oregon. Just the fact that she was “worried sick” kind of took some of the burden from me, let me breathe a bit.

Right now my little family is okay.

Sorry this post is so disjointed. It’s going to have to do.

Thank you for your thoughts and prayers.


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.

Part of Me

I’m just going to come right out and admit it here amongst friends.

I saw the Katy Perry movie on Friday, and I liked it.

I never expected to. My little darling tween, asked if she could see the movie and for the first time ever if she could bring her friend L. And when your child asks for the first time ever to bring a friend anywhere, you do it. You do it gladly. Even if it’s the Katy Perry movie. Even if it’s in 3-D. Of course you force your husband to go along too, because you shouldn’t have to be the only one to endure it. So Friday it was Riley, L., Seth, Todd and I with our 3-D glasses and a purse full of snuck in healthy snacks (cheese sticks, grapes, cashews, coconut water) gearing up to watch the show.

There were previews. Many previews, and to that I said, bring them on! I will preview all night, because the air conditioning was so delicious. I could have slept there. I could still be there, and I’d be happy. After one of the previews, Riley leaned in and whispered to Seth, “That looks good, but a little inappropriate for us.” It did look good. And it was a little inappropriate for them. Good call Riley.

Finally the show began. I always thought of Katy Perry as kind of a silly, bubble gum princess. Imagine my surprise to find our she’s a real person? And even more surprising, a real artist with integrity. Now I realize the Katy Perry movie is designed to make her look good, but I really did end up liking her. Of course what’s not to like about Firework, but there is much more there. She’s really a sweet person. And honestly, the world could use more silly. More bubble gum. More happy. And that’s what she gives her fans. She makes them happy.

Riley and her friend didn’t stop chitter-chattering about it the whole way home.

“That was awesome!”

“I feel like I was actually at the concert!”

“It was sooooo good!”

As we rode along toward home Riley turned to her brother and with deep sincerity said, “Seth, I really hope you are a famous performer one day. I hope you live out your dream.”

Todd and I met each other’s eye and quickly looked away, smiling. If as children either of us had expressed a dream to be a famous performer, (which let’s face it, it’s a dream every kid has) to our siblings we’d have been quickly put in our place and laughed out of the room. The sweetness of their relationship still amazes me.

Part of Me was way better than I expected and definitely worth seeing. There were parts both happy and sad that were so poignant, I felt my throat tighten up. Call me surprised.

Riley initiated a shared experience with a friend for the first time ever, and walked away from the experience feeling inspired. She is still talking about the movie.

That right there is worth the price of admission.

My name is Michelle O’Neil, and I like Katy Perry.

High Fructose Corn Syrup,Red #40, Yellow #5, Yellow #6 And Blue #1.

Camp is rolling along fine, and then it isn’t.

We’ve been back on the Specific Carb Diet for a couple of months(working our butts off). The kids are eating like champs. Lunches are brought from home so no big deal. Camp gives out snacks but I send substitutes. No big deal. They tell me when it’s going to be a special occasion and I send something special for the kids. Except when they don’t. Except when they out of the blue decide to give out popsicles. And I didn’t send anything popsicle-like for my two.

Seth couldn’t care less. He ate the apple he brought. Riley does not care about the food, she’s not craving the popsicle, but she cares about looking different. The first time this happened, she took the popsicle, and held it, pretending to eat it, then gave it to a friend. I was not aware it had even occurred.

But yesterday, it was too much. She did not take a popsicle, and then she had to field questions, “Why aren’t you eating a popsicle?” The questions were too much pressure. She ran and hid.

Then a group gathered around asking if she was okay, and that was the worst. More pressure. She cried. And then got a runny/bloody nose. And got a bit freaked out because everyone was looking at her and because she was crying in front of the little kids, “And I want to set a good example!” she wailed when she was explaining the whole thing to me yesterday afternoon.

Lying with Riley on her bed when she got home, we talk it through as she decompressed. My heart ached for her as I heard the tale. I fear they won’t let her be a counselor one day, (her dream) if she has problems at camp. We come up with a plan for homemade popsicles. Her aide had suggested it that morning, and I’d already called HT at work and asked him to stop at Bed Bath & Beyond on his way home to buy the molds(I’d already driven to Target for them but they didn’t have them), but we weren’t enough steps ahead. We missed it by a breath.

And even with homemade popsicles, we are not out of the woods, because these popsicles will look different than the popsicles they may or may not give out on any random day at camp. And there will be questions about the homemade popsicles. And questions are too much. Questions put you on the spot when you already don’t want to be different.

She liked the idea of the homemade popsicles, but still wasn’t sure she could manage the questions.

I asked her, “What if there were a little camper with diabetes and they couldn’t have the popsicles. Wouldn’t you feel good that you set an example of eating something different and healthy?”

“Yes, but there are no little campers with diabetes.”


We talked about how hard we’ve worked for her to be healthy and how hard we’ve worked to get all kinds of toxins out of her body and why would we want to dump a bunch of red-dye and chemicals back in?

She wailed, “I wish people would stop giving kids junk and then I wouldn’t have to be different! Why can’t we just have watermelon!!!” 

Some days they give out fruit and then she can partake.

I explained that I wished that too, but it wasn’t our job to be food police for the world.

I said, “Riley when you were little we did this diet for you, and our whole family did it to support you. And now, if it were only you, I’d probably just let you have the occasional popsicle, but now we are doing this for Seth. What if when someone asked you about your different popsicle, you said, “My brother is on a special diet and I am supporting him. Would that be okay?”

Magic words. Big smile. This she could get behind.

I called Seth in to make sure he was cool with this, and he was fine. Couldn’t care less.

We practiced, roll playing the scenario several times last night and in the car this morning.

Off they went to camp, with their homemade popsicles. I went to yoga.

I walked in the door at 11:09, just missing the call that came through at 11:07.

It was Riley on the answering machine.

“Mom. I’m having a hard time at camp,” she said in a sweet, sad little voice.

I called back and they said she was already back in the game. She’s fine.

I don’t know what the hard time was.

I don’t ‘effing know.

“…..hard, but not impossible.”

Getting ready for camp just now, Riley went into the bathroom to wash her face. The tube of face wash was really low. I’d just had a hard time getting any out when I washed my own face.

I stepped into the bathroom as she was trying to force some out.

“Riley, that tube is pretty empty, it’s kind of hard to get out,” I said, attempting to intervene and avert a huge frustrating scene for her. This is the kind of thing that can derail her. This is the kind of thing that makes parenting exhausting for me at times. Always having to be one step ahead.

She didn’t hand me the tube. She continued squeezing and said, “It’s hard, but not impossible.”

This is new.

I came downstairs and told Todd, and he looked at me incredulously.

“Who is this kid?” he asked.

The fact that she said, “It’s hard, but not impossible,” proves nothing is impossible.

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






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

*Vaccine Epidemic


* Hannah Poling Case/CBS News





Swim With a Stud-Muffin

Living from the Heart is offering an amazing dolphin retreat in Sept.










This is Seth with Amizcle, (Uh-MEEZ-clay) the enormous 600 lb playful loving dolphin stud-muffin (he’s got like 18 kids). He is the guy we spent most of our time with when we made the trip to Mexico in November.

If you have a child with special needs, they will be 100% accommodated and no one bats an eye at any behaviors. If you have only typicals, they will have a blast. All are welcome.

If you’ve always wanted to go to Mexico, or swim with the dolphins this is a great opportunity for a family vacation with lodging and most meals covered in the cost.

$1,888.50 for a family of four.

If a retreat is not in the cards for you this year, perhaps enjoy living vicariously by reading Macy’s blog and watching the videos of the dolphins on her site. It is so relaxing to do so. File Cozumel in your dreams and perhaps one day, maybe sooner than you think, you’ll be experiencing Amizcle’s magic for yourself. You never know.










I’ll never get over Riley riding a dolphin across that pool. She started showering on her own after we got home from the trip. No longer afraid to get her face wet. No longer afraid to let go of me in the water. I know I probably already blogged this but I am still in awe and will never take it for granted. She’s upstairs in the shower right now as I type this. Last year I had to stand there the whole time. Rinse her hair for her. Listen to her cry over it. Flinching the whole time. Now she does it herself. To me, this is a miracle. This is a load off. This is a step toward living independently one day. I really adore Macy who runs the program and can’t say enough good about it. So pardon me if I repeat myself like an old grandmother who doesn’t remember what she told you yesterday(I truly often don’t remember what I wrote yesterday). Indulge me, while I sit here typing, drinking my tea, not rinsing my child’s hair.










I really hope to tell as many people as possible about Living from the Heart.

Did I mention since we got back, when I tuck Seth in at night I pretend to give him sonar? I put my lips to his forehead and make dolphin sonar noises. He pretends to only tolerate it, but secretly he loves it. I know he does.

The Divine Ms. R.

I’ve mentioned Riley’s lack of false modesty here before. If you give her a compliment, her usual response is to agree with you.

You: “You are so cute!”

Her: “I know.” (We’ve worked on a simple thank you being a nice response).


You: “Your hair looks so cool!”

Her: “I have to admit, it does.”

If you didn’t know her, it might sound like conceit but it really isn’t.

She does not think she is better than anyone else. She thinks everyone is as fabulous as she is. Someone could be butt ugly, and she would not notice it and would find something to praise in them. Someone could act like a total jackass, and she would defend them with, “It’s not their fault.” She knows people act out when they are hurting.

What if every compliment given were accepted? What if we didn’t deflect them? What if we all gave people the benefit of the doubt?

What if we all loved ourselves so much, we could hold only love and appreciation and compassion for others, and nothing else?

My baby turned 12 yesterday. And she is beautiful. Just ask her.

Music Therapy

Last night was the music party which completed Riley’s year of music therapy. It was bitter sweet for me, because she will not be continuing with music therapy in the fall.

Riley has a wonderful musical ear, which we tried to encourage from a very young age, but formal instruction proved too stressful for her. We felt she was on the verge of throwing the towel in and wanted her to continue to love music, so we made the choice for MT. Over the last three years she has grown so much. She is no longer the little girl having a panic attack if she played a wrong note (fingers not as precise as her ear). She gained so much confidence and grew close to her therapist.

At the recital last night, I sat and watched as many people of various ages and abilities performed. You need tissues for that music party. One woman comes up to the microphone so excited she throws her hat into the air, (three times) before singing. Joy just uncontainable in her. Another student, a man with Down Syndrome, learned to play the graduation theme on the piano. He worked so very hard, taking several slow seconds between many of his notes, but he persevered and he did it. He dedicated the song to his niece who was graduating this year.

There was a group of young women who call themselves Best Friends Forever who performed a few songs together. Music therapy providing a peer group for them.

As I watched these children and young adults and older adults perform, I was struck by the love that has gone into each and every one of them. Many of them will never live independently. Someone is taking care of them. They are cared for. Someone gets them to music therapy. Gets their “nice clothes” ready for them. They are loved.

One man who was blind, and cognitively young, insisted we all sing along to the songs he played on the omnichord. He played Oh When the Saints Go Marching In and and He’s Got the Whole World in His Hands. And everyone sang along. And I felt He did have the whole world in his hands. I felt like we’re all going to be okay.

Seth rocked out in his chair to the Bruno Mars songs that a couple of students performed, taking these performers as seriously as he would any other, even if they mumbled through words and stood stiffly at the microphone.

Riley performed a duet with her therapist. They played Kelly Clarkson’s Breakaway. My girl played the piano and sang these words,

I’ll spread my wings and I’ll learn how to fly
I’ll do what it takes til’ I touch the sky
And I’ll make a wish
Take a chance
Make a change
And breakaway
Out of the darkness and into the sun
But I won’t forget all the ones that I love
I’ll take a risk
Take a chance
Make a change
And breakaway  

She hopped up to the microphone to introduce herself and took the cutest little bow at the end. Full of happy confidence. Her voice a sweet soprano. Her fingers doing the job on the piano.

On the way out, the man who was blind was being led by an aide dressed in scrubs. He asked her, “Are you proud of me?”

She said in voice filled with so much love, “You have no idea.” He smiled big as he shuffled off toward their car, with her at his elbow.

I am so thankful for The Cleveland Music School Settlement where people of all abilities are allowed to grow and experience music. It is such a unique place. The Settlement turns 100 this year. Imagine how many students have passed through its doors!  I am so thankful that Riley was provided a safe place to foster a love of music over the last three years. It’s been a beautiful experience for her.

I’ll spread my wings and I’ll learn how to fly
I’ll do what it takes til’ I touch the sky
And I’ll make a wish
Take a chance
Make a change
And breakaway
Out of the darkness and into the sun
But I won’t forget all the ones that I love
I’ll take a risk
Take a chance
Make a change
And breakaway  

A Camper’s Dream

This will be Riley’s fourth year of music camp. From her first summer there she’s had her eyes on the prize. She wants to be a camp counselor.  One of her music therapists heard of this dream a couple of years ago and encouraged her. Why not? It was a long way off. Her view was why put limits on her? Another music therapist she had very early on heard about it and was like, “hell no.” I mean, she didn’t come out and say that, but she was skeptical. She’d had Riley when she was still a screaming mimi. She didn’t want to encourage this. I backed off and let it go for a while, but Riley never did. She wants to be a counselor.

The music therapist who was championing her found a new job.

The organization that runs the camp got a new director last year.

I popped in to talk with the director today. I needed to know how realistic our chances are. Riley talks about being a counselor, a lot.

The director told me she was so moved watching Riley as the lead last year in the musical production.  They had just two weeks to put together the play and they needed someone with a good memory to learn the lines. Riley did it, and she was great. She said she’s had her eye on Riley, and she’s one of the most empathetic campers they have.  This is an inclusion camp, mostly typicals, and several kids with special needs. She told me not to do anything to discourage her dream. She told me Riley has touched her heart. She told me she prays for my little girl. She told me, “She’s going to be alright.”

She flat out made me cry.

We’re going to work together and figure something out. It’s still a couple of years away before she can even be a counselor-in-training. Maybe she can be a helper or an assistant before she is a counselor-in-training. Ease her in a bit. Maybe we have an aide unobtrusively shadow her when she’s a counselor, just in case she needs help.

I know Riley can do it.

I love that she wants to do it.

I love that there are people who care about her and want to support her in her dream.

I love my girl.

*Riley in the role of “the teacher” in last year’s summer camp production. Camp starts in less than three weeks.

Finding my way on the deck

Right this moment, I am fine. I keep telling myself that.

Today was a rough day. I have been slaving in my too small kitchen for a month, making every morsel for my family from scratch. It’s been hot. We have no A/C.

Riley has a hard time getting dressed. She gets distracted by the cat, and by toys in her room. She freezes deciding which outfit to wear. There’s face washing and hair brushing and finding the right barrette. She doesn’t want help. She doesn’t want to be treated “like a baby.” But she takes anywhere from 45 minute to two hours to get dressed. And I’ve got places to go. Errands to run. Things to take care of.

I made her a hot lunch today, only to watch it congeal as she took forever, once again, not dressed by noon. I could feel myself getting so pissed as I marched upstairs toward her room. And on the heels of my anger came a voice that said, “Pre-pave. Pre-pave. Pre-pave.” It is an Abraham-Hicks exercise, where you set up your intention before entering any given situation.

I can’t say that I took the time to truly pre-pave. I kept walking toward her room, but the follow-up thought, “think about what you want” came to me as I touched the knob to open her door. It helped.

Gently noting in my mind that I had some control over how this all played out allowed me to be non-reactive even when Riley completely lost her cool with me.

So. A victory.

It’s rare anymore, but it really does shake me up when she has a meltdown. It makes me fear she hasn’t come very far, and maybe it’s just that we ask so little of her. I know it isn’t true, but the fear comes up.

I am tired. I feel like I’ve had my feet tied together trying to run a marathon. I constantly compare myself and come up short against others who do not have the challenges I have. Whose kids do not take two hours and a meltdown to get dressed. Why could I not promote my book more? Why have I not gotten very far on a second one? Why have I barely written at all lately? How did I let my nursing license lapse? Why have I not studied more and re-taken my nursing boards? Why have I not had a true paycheck in ten years? Why do I have 15 pounds to lose? Why is my house always a wreck? Why am I not content?

Should I just be able to find contentment in what I have and what I am doing? Swallow hard and count my blessings? If so, how?  ‘Cause I think I’ve done a lot of “inner work” and I still feel sad and miserable.

Not all the time, no. Tomorrow I will feel much better I am sure. A new day will dawn. I will laugh. I will be grateful for this life.

It’s just, sometimes….it sucks.

I’m out on our back deck now. The trees are lit up from the west, some leaves are bright green, some are shadows. The birds are singing. Our neighbor’s koi pond makes it’s music. It has finally cooled off.

My sweet husband is washing out the garbage can in the back yard. Cleaning up dog poop. Taking care of crap I never have to. Soon he’ll go in and supervise bedtime routine for the kids. He knows when I need to back off and he steps right in. Words aren’t even necessary, but they are welcome. Tears are welcome too. He sent me out to the deck with my computer and a choice of water or wine. I picked water.

The kids are signed up for day camp this summer. And Riley. After two and a half years of homeschool, my Riley will be going to school in the fall. A school for kids with learning differences. She’s so excited.

And praise God from whom all blessings flow, it is a school that requires her to wear a uniform.

Thinking about the uniform, with her typical void of false modestly she beamed and said confidently, “I’m going to look super cute!”

She will. I’m sure of it.


The Grump Family

I have been dealing with a very bad cold since Tuesday. The kind that doesn’t allow you to sleep because so much is going in with your throat, ears, nose, sinuses, that kind of thing. Seth had it first, then Riley, then me.

It’s been hard, trying to implement this new way of eating, working like crazy in the kitchen, all while not feeling well, and also dealing with the emotions of my children who are having to get used to new food and let go of some old food favorites.

Plus, let’s not forget I too am detoxing from my sugar addiction, and I am an emotional eater and I can’t turn to the foods I love during this stressful time.

Yesterday, I was a total grouch. My kids were driving me crazy. Seth didn’t like anything I busted my butt to prepare for him. I burned my hand in the kitchen. We were going to a party, and I made sure to bring stuff my family could eat, but the whole thing filled Riley with so much anxiety. Anxiety about feeling “deprived” of what everyone else was having. Anxiety about being different. I was getting sick of hearing about it. On the way there we talked about all the kids she knows and I rattled off all of their food issues (there are plenty) and talked about how it isn’t a big deal and everyone had something they’re dealing with, and it was in one ear and out the other, her anxiety ramping up up up. I wasn’t the most patient. I  wasn’t talking it through, or validating her feelings, I was basically rolling my eyes, telling her “no one cares” if you are different, and “if you keep this up, we’re turning around and going home.”

She navigated the party quite well, with a lot of navigating on my part at the beginning, better after she got food, and with some whining at the end as we were leaving… over a box of canolis that showed up. She’s never had a cannoli, and she certainly felt like she was missing out. I convinced her that cannolis are filled with an almost cottage cheese filling and not even all that yummy. Todd mentioned how disgusting the pastry part is, practically made of lard. And for us, it is true, we’ve never really been cannoli people (Cheesecake? Now you’re talking). She felt a little better. Hey…you do what you gotta do.

We took a moonlit walk last night, after I heard the moon would be the  brightest we’d ever see in our lifetime. It was awesome, sitting there on a park bench, looking up at that beautiful moon with my husband and my sweet little kiddos.

After that, Riley was tired and very whiny getting ready for bed. Suddenly so tired she couldn’t wash her face. She started freaking about the garbage in the bathroom being full. She was teetering. Todd, who had worked at 6AM and then energizer bunnied all day, going to the store after work and then going to the party, well….he yelled at her.

It wasn’t a good loving supportive day for Riley. She is doing so well most of the time, we sometimes forget she still has autism. We forget it’s not as simple as saying, “Don’t worry about it.” If she could “not worry about it,” she certainly would. We never could have just blown off her feelings even a couple of years ago. We’d have had a major meltdown on our hands. Sometimes we forget how hard she is still working.

This morning, I snuck into her room and snuggled into her bed, wrapping my body around hers. She wiggled into me. I held her a while and then said, “Riley, I’m sorry I was so grumpy yesterday.”

Immediately she turned to me with her big beautiful eyes and said,

“I totally forgive you.”