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.

Is Your Kid the Welcoming Kind?

Cleveland Circle of Friends (2009)

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

“Why doesn’t anyone like me?”

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

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

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

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

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

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

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

But it can.

It also scars their mother.

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

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

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

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

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

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.

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.

Be Kind for Autism Awareness

Parent teacher conferences at Seth’s preschool. We are new to town. I don’t have a local emergency contact person. We’ve only been here a couple of months and it’s all I can do to tend to my two children. One with autism. I don’t get to “do coffee” or hang out with the other preschool moms, chit chatting away, making friends and emergency contacts. I’m busy with doctor appointments, and therapies, and making every morsel my family eats from scratch in order to follow The Specific Carb Diet to a T. I don’t know it yet, but my health is about to take a dive. Adrenal fatigue. Thyroid.

I don’t have anyone to leave my kids with for this 20 minute conference. But the conference is essential. Mandatory. I noted previously the secretary’s office has a train table, a basket of toys and books. I’m sure it will be alright. I’ll be just down the hall. They play nice together. Nothing should set Riley off here.

The secretary says, “Yes, yes of course! They are darling! Look at them!” I let out my breath. I never ask for help. I hate asking for help. But she’s so gracious. I get a lump in my throat.

Seth’s teachers love him. They say he’s a doll. In and out. No dilly-dallying. I’m on my way.

Back in the office, the director is there. She takes me aside and in no uncertain terms tells me this is not a daycare. I can’t be leaving my kids with the secretary. She has work to do. If she lets me do this, then everyone will do this, and no work will get done.

I feel punched in the stomach. I have just moved here. I don’t know anyone. No emergency contact. I moved here for my older child who has autism. I am trying so hard. I am buckling with the strain of the last few years.

I asked for help, one time. For twenty minutes.

Tears welled in my eyes and I willed myself not to cry. I didn’t cry. I wouldn’t look at her. I took each child by the hand and walked briskly down the hall.

She approached me the next day. She felt terrible. Wanted me to assuage her guilt. I couldn’t get on her bad side. For Seth. He deserved some normalcy in his life. I was polite.

This is autism.

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.

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.

Spare Me Your Concern

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

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

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

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

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

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

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

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

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

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

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

I should have made him use the facilitated communication device. 

I should have mainstreamed him. 

I shouldn’t have mainstreamed her.

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

Maybe. Maybe not.

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

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

 

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.

Hiding Dietary Supplements for Children in Foods

It wasn’t until last year that Riley could swallow capsules and pills. For many years our mornings and evenings were spent grinding supplements and medications with a mortar and pestle, and mixing them in food and hoping our kids wouldn’t give us too much trouble taking them. In the following video, my dear friend Betsy Hicks of Elementals Living (they are linked on my sidebar) demonstrates how to disguise magnesium supplements in chocolate wafers.

Betsy has such an ease about her, giving presentations in person and on camera. She knows her stuff. She’s a whiz at fermented foods. Plus, she’s pretty. For more of her videos on nutrition for healthy living and special needs click here. You can order supplements from Elementals Living too, if you are in the market for them. They send them out quick to you.

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.

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.

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/

 

 

 

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.”

The Golden Hat

I simply couldn’t conceive of how devastating it would be not to be able to hear my childrens’ voices. Not to be able to communicate with one’s children, to hear them learn, grow, and express themselves verbally.

– Kate Winslet

 

 

 

 

When Simon & Schuster contacted me to ask if I would review The Golden Hat, I said yes, immediately. The book is Kate Winslet’s baby. The profits will go to support those with autism. I love Kate Winslet. I think she is one of the finest actors of our time. She does not have a child affected with autism, but became close to one while doing the voice over for a documentary called, A Mother’s Courage, aka The Sunshine Boy. As her friendship with Margaret, (the mother of a child with autism and the woman who made the film) progressed, an amazing thing happened. Margaret’s ten year old son Keli, who was non-verbal and profoundly affected by autism began to speak on an augmentative communication device. His first words,

I am real.

He was in there. He was aware. He was listening to everything. A physician had told the family to assume he had the cognition of a toddler. That doctor was dead wrong.

At ten years old, this mother finally “met” her child.

It also turned out that many other things they assumed about Keli were wrong. His preferences, his interests. All wrong. And guess what? He’s a poet. One of his poems is titled The Golden Hat, thus the title of the book and the foundation they have formed to help secure communities for those with autism to live in when they mature into adulthood. Any parent with a child on the spectrum has that nagging fear…what will become of my child after I am gone? The Golden Hat Foundation is working on that.

Kate Winslet schmoozed a whole bunch of celebrities into taking self-portraits with her own fedora in the shot. And that hat got around! Meryl Streep, Julia Roberts, Daniel Radcliff, Angelina Jolie, Julianne Moore, Don Cheadle, Leonardo DiCaprio (of course), Rosie, Christina Aguilera, Matt Damon, George Clooney, Gwenyth Paltrow, Michael Caine, Hugh Jackman….this list is seriously just skimming the surface. There are so many celebrities in this book. She even got Steven Spielberg to take a shot of himself in the hat!  What’s great about the photos is they are not fancied up. They are taken with Kate’s digital camera. Accompanying the photos are quotes from the celebrities. They were asked to think about being trapped inside a body, unable to speak, what would they be wanting to say?

Some of the celebs clearly didn’t understand the assignment, their quotes don’t make sense. A couple didn’t offer a quote (Angelina), but most of them did. Many of the celebs used the hat to hide behind. I thought that was interesting.

When the book came in the mail it felt like a present, which I guess it was. I didn’t have to pay for it. It’s a gorgeous coffee table type book.  I sat out on the deck with a nice glass of lemon water. There was a balmy breeze as it’s been an unseasonably warm March. I let my own kids play on their iPods and spent the afternoon pouring over the stories and the photos and Keli’s poems and I couldn’t help but think of my mama friends whose kids are non-verbal. Betsy, Kathi, Jeneil, Kim, and so many others. All with different takes on autism. All with different ways of coping. All with so much love for their kids.

I closed my eyes and just sat there, holding all parents who are on this road in my heart.

Real familes. Real mothers. Real children, just like Keli.

They are real. 

I am Intelligent from Amothers courage on Vimeo.


*Proceeds from the book support The Golden Hat Foundation. I was not paid to write this review but as noted in my post, I did receive a free copy of the book.

Living in Technicolor: An autistic’s thoughts on raising a child with autism By Lydia Wayman

Living in Technicolor: An autistic's thoughts on raising a child with autism

Many of you know Lydia, of the blog Autistic Speaks. Lydia is a young woman with autism and she has a new book out, full of wonderful information for parents of kids on the spectrum. It isn’t a how-to, but more of a “this is what goes on inside me, and maybe it will help you relate better to your own child if you understand.” But it isn’t just for parents. Anyone wanting to better understand people with autism would enjoy this very engaging book.

Lydia is in the process of fund raising for a service dog of her very own (his name is Blue and he’s a looker). The proceeds from Living in Technicolor will go toward bringing Blue home to her.

To purchase Lydia’s book in paperback or e-book form, click here.

Sometimes I think life is just one big misunderstanding

Yesteday, we attended a child’s birthday party at a local public pool. There was a boy at the pool, (not part of the party), a teen, who flapped his hands, walked on his toes, and squealed a lot. In the water, he was happy.

Also in the pool, were two men, maybe in their late sixties. They were walking in the water, having a conversation. Getting their exercise while they got their chat on.

At one point, the boy, in his joy, dove into the water, right between them, making a big splash.

One of the men got in the boy’s face and shouted, as he wiped his glasses, “WHAT IS THE MATTER WITH YOU? WHY WOULD YOU JUMP RIGHT IN BETWEEN US LIKE THAT?”

The boy looked at him, clearly confused, cowering slightly, then went on his way, swimming away from them like a fish.

I wanted to yell at the man, “What’s wrong with you? Can’t you see he has autism?” But the moment was over, and I wasn’t 100% sure, and anyway….

—-

Today I was at Whole Foods. I had a small cart full. At the checkout an employee came over and said, “I know you’re over the limit, but I’ll take you in the express line. We’re a little short staffed today so I want to help out the other cashier.”

As she scanned my pile of items, a mother/teen daughter duo approached from behind. They were obviously in a hurry. Both proceeded to glare at me and sigh, my haul clearly over the limit.

I decided rather than reacting or apologizing or explaining, to merely allow myself to be misunderstood. Sometimes it just isn’t worth the energy.

There is a lesson in A Course in Miracles which says, “I do not know what I’m looking at, so I must not judge what I see.”

These are two examples from the last 24 hours in my life which brought that message home for me. I hope to remember them, the next time I am quick to judge.

She Even Bought Me Breakfast!

What does author, mother of three girls with autism, and autism advocate Kim Stagliano have in common with the guys in the Cleveland cover band Almost Famous? Besides fake Slash’s curly hair?

New by

Both were on Fox News this morning. It was bizarre. There was the band, singing Save a Horse, Ride a Cowboy (BTW….Seth always thought the lyrics of that one were “Shave a horse, ride a cowboy”) and in the middle of the sexified raunchy song, they stopped immediately and cut to Kim. And then they showed a picture of poop.

Kim looked smashing in her plaid wool suit. Ultra poised and dignified, in stark contrast to the band,(not that there is anything wrong with dressing up like Slash, Elvis, Poison or AC/DC if it brings you joy).

We tweeted during the show and within an hour Kim and I were having breakfast at Tommy’s, a wonderful Cleveland establishment. Always a pleasure to see her and have time to talk. We packed family, books, autism triumphs, tragedies and puzzles, and lots of laughs into our conversation and enjoyed a kid free meal together. Then she was off to be keynote speaker at an autism conference held here today.

Tomorrow she has a book signing at The Learned Owl in Hudson at 1PM. If you are in the area, do attend. She never disappoints.

She’s superwoman.

Go, Kim Go!

Renaissance: : “a movement or period of vigorous artistic and intellectual activity.” -Webster’s

My computer is acting wonky, and I’m not even sure if this will post, so I’m keeping this short and sweet. The last day of camp the kids put on a Renaissance performance. Riley was a lead. Seth had lines too. It was cute. She’s been invited back for two more weeks of theater arts camp. This one not an inclusion camp. She’ll be the only kid with special needs and the first one ever for that block of camp. She has no idea how cool she is.

I panicked about Renaissance costumes and then remembered Janet and Brian’s wedding.

I did some cutting and pinning, and voila! Did I mention Riley was the lead girl? The Queen? She was.

Anyway…gotta go fix computer issues. Hope everyone is having a great weekend!

Lovingly yours,

MO’N