Witness

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

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

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

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

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

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

Love for a child.

It’s a powerful thing.

Let the Dogs Speak!

I first met Marianne McKiernan when she contacted me to do a story for the news organization she works for in Denver. She is a service dog puppy raiser as well as a reporter and her dog-in-training, Rocket, had a mad crush on Jingle. In addition to training dogs for Canine Companions for Independence, Marianne is an animal intuitive and she has offered her services a couple of times when our pets have been out of sorts.

In her new book, Let the Dogs Speak! Puppies in Training Tell the Story of Canine Companions for Independence, Marianne tells the story of four dogs she’s raised and she does it…in the dogs’ voices…thus the title.  Their names are Hudson, Parker, Ross and Mars. I started to read the book, and then Seth hi-jacked it and I didn’t see it again for three weeks. He took it to school for his reading time there, and he read it every night before bed. He really enjoyed learning about each dog’s story and also the personality and idiosyncracies of the many dogs discussed in the book. For instance, one dog is phobic of butter. When his person takes a stick out of the fridge, he gets really scared. We all have our issues, right? One dog liked to use his bone as a skateboard. One dog’s hobbies included rolling in dead snake.

I enjoyed learning more about what goes into the process of raising a service dog. I had an idea, probably a better idea than most, but I didn’t really know the extent of it.  In addition to the extensive work puppy raisers like Marianne and her husband John put in, the dogs at Canine Companions go through a rigorous program with prison inmates as well (Jingle also did this in her program with 4 Paws for Ability). As one of the dogs in the book states, “It takes a village to raise a service dog!”

Let the Dogs Speak! would be a perfect book for anyone who is considering obtaining a service dog. It would be especially soothing and wonderful and exciting to read for anyone who is actively waiting on a service dog. It would also be great reading for anyone who is considering being a puppy raiser for a service dog program. But truly, anyone who loves dogs is sure to get a kick out of it. Every question you ever had about service dogs and their role in society is covered.

You just can’t imagine the dedication and commitment on the part of puppy raisers like Marianne. They take puppy after puppy, love them, work with them, and then let them go, time after time. It takes a special kind of person to make that kind of committment and sacrifice.

On behalf of our family and those like us, we thank you Marianne, and we’re so appreciative for your willingness to do the beautiful work you do.

We are glad you Let the Dogs Speak! and we are so blessed to call you friend.

Marianne is busy raising Jeb, puppy #9, almost 8 months old.  Rocket, #8, is at Advanced Training and he’s a hopeful for a May graduation. Even after all the hard work and love put in, not every dog makes it through the program. It is nerve wracking for Marianne right up until the day of graduation.

Jeb is continuing Marianne’s DogBlog at The Denver Channel.com.

She says she gets more out of CCI than she puts into it, and feels it is a pleasure and a privilege to raise these dogs.

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.

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.

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  

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.”

Dolphin Therapy Retreat in Cozumel, Sept. 2012


Today I am re-posting an entry I wrote last year about the wonderful Dolphin therapy experience we had in Cozumel, Mexico. Macy, the director of Living from the Heart is organizing another retreat for this coming September, and I wanted to get the word out to as many people as possible. I am not paid to promote the program, I just want to support it.

As you might remember if you read it when I orginally posted, my “afraid of the deep end” daughter (who has Asperger’s) rode a dolphin across the pool while we were there, with water splashing on her face the whole time. Water in the face was always a huge trigger for her. Since coming back, she has begun to shower independently, something she could never do before, due to fear of water in her face. This is a huge thing for us, for her to have that independence.

Living From the Heart is way more than a touristy quick dip with the dolphins. It’s a retreat. It’s a family bonding experience. It’s wonderful to be in a place where special needs are understood and not an issue, but it isn’t only for special needs. All are welcome.

So below is the post I wrote back in November. This is my family, high on dolphin:

The main reason we chose Mexico for our trip was for the dolphin therapy. My friend Betsy already had a dolphin trip planned for her family and somehow it fell into place for us to go at the same time. Our vacations were separate, but our stays overlapped, so that we shared our second day at the dolphin center with them. It was perfection to share such a special experience with such a dear friend! Betsy’s son is 18 and profoundly affected by autism. Her husband is an MD who specializes in overall wellness and also autism. They do good work.

This is us on the first day, getting acquainted with the dolphins. The woman with us is Macy Jozsef, Director of  The Dolphin Experience, Living from the Heart Dolphin Therapy. She is awesome. Riley took to her and trusted her immediately. We’d walk down the streets of Cozumel with Riley holding her hand, leaning all over her. It’s an energy thing. Riley responds to love.

Riley was excited to see and interact with the dolphins, but still quite tentative in the water. She absolutely did not want to swim in the deeper section and was content to stand on the shallow landing. This dolphin’s name is Amizcle (Uh-MEEZ-Clay). He is huge. About 600 lbs. He eats 75 pounds of fish per day.  Riley said many times throughout our time with him that he reminded her of her service dog Jingle. Again, it’s about energy and both animals are sweet, playful, helpful (and she liked that they both have pink on their noses).

We had three sessions our first day. In between sessions we were allowed to go to a tiny private beach on the Dolphinaris property. It was there Riley found her own bouyancy for the first time in her life. She had a breakthrough earlier this year, and was finally able to put her face in the water but had not yet gotten the buoyancy concept in her body. We kept the life jackets on, and I carried her out onto the soft waves. She straddled my waist, like a much littler kid, and we bounced and floated, and twirled. Looking up into the blue sky, I couldn’t help thinking, “This is what I wanted for you when you were tiny.” We missed this developmental stage. Her nervous system was so very jangled at the time. She had always been so anxiety filled in the water, she was not light or bouyant at all. She was certain she would sink, and she would have, all contracted like that.

In and out of the water all day. She played in the sand. Laughed and played with Seth. Ate PB & J. More dolphins. Back in the water, holding my hand she finally, truly, got the feel of floating. She was sitting back, relaxing, bobbing along in her life jacket. Holding my hand, but basically doing it herself.

During dolphin therapy, there is a lot of time to socialize with the dolphins, interspersed with moments of receiving sonar. Hear, Amizcle is offering sonar directly to Riley’s head. Sonar is similar to an ultrasound. If you’ve ever had ultrasound used on a sore muscle, it’s kind of like that. It immediately relaxes the body. Sonar would be for a minute or two, and then more playing and fun. Todd and I tried it and both of us felt like wet noodles coming out of the water. It puts you in a total zen state. Beuno cool.

Our next session with the dolphins, we all swam out to the middle of the pool, with Riley clinging to mine and Macy’s hands. We were proud of her for stepping off the landing and coming into the deeper water. I held the back of her life jacket to stabalize her as the dolphins swam past so she could reach out and pet them with one hand.

The third session, we did the same, only this time, she deliberately let go of my hand. There was Riley, floating in 13 foot deep water, reaching out and petting humongous dolphins which slowly kept weaving their way around us.

And then…she surprised us all by agreeing to do this:

Seth did it first and his bravery surely inspired his sister. Todd and I both took a couple of dolphin rides too. They are so strong! Their bodies are pure muscle, and they go super fast, although Riley’s went a bit slower with her, thank goodness. It was a smaller female dolphin that she rode. The dolphin trainers were very intuitive and respectful about what the kids needed. They didn’t push, but at the moment they felt there might be receptivity, Riley was on that dolphin before she could even think about it. And she was so proud!

Seth recieved many sonar session too. We hoped it might help his PANDAS and at the very least, anything that relaxes the body is going to have a positive effect. They even did some sessions together, head to head or feet to feet.

This next photo is one of my very favorite photos from the trip. I just love the tiny boy juxtaposed against the enormous dolphin. Such a gentle majestic, beautiful creature Amizcle is. And any time I can see Seth without his hat, I love it.

Here is HT, getting a smooch from a sweet girl dolphin.

Here I am, loving my good, good kids.

Macy joined us for dinner a couple of times. Her story is interesting. She survived breast cancer decades ago, and felt a strong pull toward dolphins as part of her healing process. She continues to use meditation fueled with dolphin imagary to maintain her vibrant health. This was particularly poignant to me since my friend Clarissa, who made the trip possible, died of the very same disease.

Is there anything more beautiful to a parent than the sight of your children sleeping peacefully? Especially with sun kissed cheeks? I think not. Dream, dream, little ones. Dream of dolphins and floating, and blue water and sky.

Tomorrow, we hit Cancun.

Together, 24/7

What is something in your life that you have an attachment to that is somewhat limiting your vitality?

This was our question to ponder at last night’s 40 Days weekly meeting.

Mine is that I am the only person in the world who can give my children what they need at this time, even if it is killing me somewhat limiting my vitality. I don’t see a clear way out of doing what we are doing presently, but I’m actively considering there might be other ways to live and learn which can work for all of us, including me.

Using Technology to Communicate with Your Developmentally Disabled Child

On Feb. 14th, Elizabeth Aquino, writer of the beautiful blog a moon worn as if it had been a shell, will be co-hosting a webinar on using technology to communicate with your developmentally disabled child.

Details can be found in the link above. I have so much respect for families of non-verbal and pre-verbal children. The love they give, despite not getting to hear “I love you” back verbally is so moving to me. They are true examples of “unconditional love” (often talked about but less frequently seen) walking around on this planet.

It’s fitting the webinar takes place on Valentine’s Day. A day earmarked for love.

What Special Needs Can Look Like at a Wedding

My friend Kim’s girls were excluded from a family wedding and it’s caused a whole heap of pain for all involved. What were the bride and groom afraid of? Most special needs parents are not going to let their children disrupt a special occasion. We will get our kids out of there pronto if things aren’t going well. We live on hyper alert. We’re not here to ruin special occasions, but we would like to be part of them.

I grew up with a boy in my extended family who has Down Syndrome. He is one year older than me. He was ring bearer in our wedding. What he brought to our special day was joy multiplied. Was there a chance Jack would do something unexpected? Yes. And I had point people assigned to him just in case.

The people there loved him. He was in his glory. He had the best day. Jack did his ring bearing duties beautifully. He let out a huge WOO-HOO! when the priest said, “You may kiss the bride.” He made the reception even more fun with all his dancing, at one point landing himself in the middle of a huge circle of cheering fans screaming, “Go Jack! Go Jack!”

We gave him a copy of the reception video, and he took it back to his group home and played it incessantly for months. 

Just thinking about it again, I have goose bumps. It makes me happy, to think of him so happy.

How sad that some choose fear over love. Weddings are stressful. People get caught up in wanting to control every detail. But what’s more important, having the perfect wedding? Or valuing the perfection in everyone you love.

 

Glee – You’re on Notice

Shuffling out of my bedroom still half asleep, I’m greeted by my bright-eyed tween with her usual morning after questions.

“Did you watch Glee?”

It’s our Tuesday night assignment. She can’t watch Glee ’til we’ve watched Glee and screened it. And she might explode if she doesn’t get to watch it, today. She’s as “hopelessly devoted” to Glee as I was to Grease when I was her age. Only more so.

I hug her tight and she stands on her tip-toes, arms around my waist. The tip-toes are to make herself taller than me. It’s new, and she can’t stop doing it. We look at each other eye to eye.

“We need to talk about Glee.”

“Was it appropriate?” She asks, hopefully.

“Well, most of it was okay, but there was a part that really upset me.”

Her face drops. I call her father and brother into the room. Todd and I talked for hours the night before about how to address this and I can’t say we’ve really figured it out.

“Riley, you know how sometimes kids with Asperger’s, when they are having a hard time, they can be misunderstood and people think they are brats?”

She nods.

“I mean, even Dad and I didn’t get it at first, right? When you were little?”

She waits for more.

“Well last night on Glee, there was this new character, who behaved really badly, and said because she had self-diagnosed Asperger’s, she was entitled to act like a brat.”

“What did she do?”

“She insulted the Glee club, and even though she wasn’t talented, she felt she should be the star of the show, and she was really mean and rude.”

Todd adds, “She might not have really had Asperger’s, we’re not sure, but was using the diagnosis, as an excuse for her bad behavior.”

Riley looks back and forth to each of us.

I continue, “And we really were mad about it, because it’s not fair to stereotype kids with Asperger’s like that. You have Asperger’s and you would never act that way. You are never cruel. You don’t think the world owes you favors. That’s one of the reasons I love writing about you, because it gives people an understanding of how sweet kids with Asperger’s are. You’re a great ambassador for Asperger’s.”

Neither child knows what an ambassador is, so we explain the concept, while inwardly I question whether that’s a bit much to put on a child. Will I ever feel like I’m not winging the parenting thing? Ugh!

Seth nods along, affirming his sister’s awesome ambassador worthiness.

Riley listens intently, then says, “Maybe the writers didn’t mean to depict Asperger’s in a bad way.”

That’s my kind hearted girl, always giving people the benefit of the doubt.

Todd says, “Maybe not. And maybe they’ll take the story line further and explain more about what Asperger’s really is in future episodes. We don’t know.”

Her face suddenly twists up with worry.

“Can we just assume they aren’t talking about me?” she asks, her voice rising a couple of octaves.

The second agreement from The Four Agreements pops into my mind. Don’t take anything personally. Could I just assume they aren’t talking about Riley? Could it really be that easy?

Somehow I feel I have to protect her from what the world thinks of Asperger’s. She’s not rude. She’s not lacking empathy. She’s not robotic. I hate those stereotypes. And I’m not sure Riley really understands the repercussions for kids like her if negative stereotypes about Asperger’s are propagated unchecked in our society.

But then again, I know how pushing against something makes it bigger. Why not just let Riley do her thing, and continue to touch the people she touches, and change perceptions in her own little microcosm, one heart at a time?

Finally she looks at me with tears in her eyes and squeaks out her worst fear about the whole thing,

“Are you not going to let me watch it?”

This is where I want to put the powers that be at Glee on notice. Seriously. Ryan Murphy? Brad Falchuk? Ian Brennan? Dante Diloreto? (My daughter told me your names. She has everything about the show memorized). It’s really unfair to make people who are so vulnerable the butt of your humor. What’s next, kicking puppies? You better redeem yourselves or I’m leaving your viewership and taking a whole lot of people with me. The autism community is a big one, and it’s a divided one, but I think we can all agree, don’t mess with our kids. And BTW? We have lots of friends. 

I look at Riley and tell her, “We’ll keep watching it, and we’ll keep talking, okay?”

She sighs big. Relief all over her face.

She loves you Glee.

Keep that in mind.

Executive Function


I have several phone calls to make. I have laundry to do. I am fixing Riley’s supplements. Where was I? Oh…I was going to call Lidi to see how she’s holding up since her dog died.

Watching me spin my wheels, trying to decide what to do first, Riley says, “Mom, I think you have a little autism.”

Curious about where she is going with this, I say casually, “You do? Why?”

“Well…because you had me, and I have autism, and you are having executive function issues.”

Here is where I did the blank mommy, “You don’t say?” kind of face. Give nothing away. Do not laugh. Do not smirk. Oh my God she’s so cute. Do not laugh.

We discussed executive function issues the other day, after she spilled a whole glass of water on the table, where my laptop sat, but proceeded to sit down and eat her snack, rather than clean it up, because she was hungry. Made sense to her. Todd, who has worked in hospitals for the last 20 years commented that day, “It’s like she has no triage ability.” After it happened, I explained to her how she is not a bad person for doing this, but it is something we need to work on, because despite all her awesomeness, she does have challenges in executive function. We focus on her gifts, yes, but we also need to keep bringing up the rear, you know?

She adds, “Plus, we kind of look alike.”

Smiling at her I say, “Riley, if I am like you at all then I’m glad because you are awesome.”

She flashes her sweet smile.

Truly…how did I get such an incredible kid? I adore her. I want ten more just like her. Okay…I admit, that last sentence was a bit overboard, even for me.

But every day, I just enjoy her more. 

Now, where was I?

A Breath of Fresh Air in Wisconsin

The kids and I left HT home and took a road trip to Wisconsin over the last few days. Just got back last night. Vast, open spaces. Ahhhh.

I’ve got so much swirling around in my brain to write, I can’t decide what comes first? It’s been a crazy busy couple of weeks. This is my friend Betsy, who graciously opened up her home to us and made us feel so welcome and well fed and loved. Betsy runs a website called Autism Law of Attraction, which I’ve written a little bit for.

This is Beth, holding Gretel. Beth is a medical intuitive who works in Betsy’s husband’s office. He is a doctor specializing in treating children with autism. Elementals Living. Their link is to the right on my sidebar for future reference. Betsy also works in John’s office, wearing many hats there.

This is Betsy’s son Joey. Joey is 18 and has autism.

He is a happy guy and he is very well loved. One of the cutest things I witnessed while at Betsy’s was Joey going up to Dr. John, presenting his arm to him and saying, “Kissy kissy,” and John…who is very quiet and a bit reserved and who has a dry sense of humor and who can appear a bit intimidating, taking Joey’s arm and going down the length of it, kissing it, repeating “Kissy, kissy.” Adorable.

We had such a good time. The kids are awesome little travelers. They spent a lot of time in Betsy & John’s pool. The highlight for them, when a frog jumped in and spent the afternoon swimming with them. They named him Mr. Ribbit and here he is on Riley’s foot.

They also did a bit of bouncing.

And swinging. 

They even had an Angel for Riley to love, since we left Jingle home.

On the long drive home (8-9 hours)they watched ET for the first time. I loved the movie as a kid and it brought me such good feelings to listen to it as they watched. They also did lots of singing, and lots of playing with new Webkinz I bought them at Cracker Barrell.

The only meltdown during our road trip was mine, and it had to do with:

getting lost + Chicago traffic + drinking too much coffee and needing to pee.

A deadly combo. Luckily, my children knew what to do, and immediately began visualizing. In short time, they manifested a Jewel Osco, with a clean bathroom, and all was well with their mother, and the world.

We had a great time.

It’s so good to visit friends. To be able to picture their surroundings when you talk with them. To get a feel for where they are. I’m filled with so much appreciation today for being in a place where we could do this, and for the wonderful hospitality offered by Betsy and John.

Theater Arts Camp – A Success!

Today was the last day of theater arts camp. Riley was the only kid with special needs and she was with an aide she didn’t know previously and kept the fact she had an aide undercover. Her aide was young, and everyone thought she was just another conselor. Riley’s super duper memory and ability to easily learn lines is no doubt what scored her the leading role. The play was an original story with a hodge-podge of familiar songs and show tunes. Riley played “the teacher.”

Eariler in the week it was touch and go. She had an issue with her microphone, and almost couldn’t get past it, but she was able to articulate her feelings and we came up with a solution, and she got through it.

She had a beautiful solo in the beginning, and here she is in one of the numbers which she performed with the camp counselors. This one blew me away, because just the noise at the beginning of the scene would have derailed her not so long ago.

Yes. I cried.

And Seth. My baby. Look at him attack the mic and do Michael proud. I love this boy. I love everything about him. I love him and I like him, and I think he’s cool.

And how cute were the tiny kids? Impossibly cute. Our friend Jancy came to cheer the kids on. It was so nice of her to want to be there. The kids had only seven days to actually rehearse.

The Cleveland Music School Settlement is a place which truly supports those with special needs. It is an organization with a heart. A lot of people jumped through a lot of hoops to make this camp happen for Riley. They were all rooting for her to even get into this session, and then…she blows us out of the water by auditioning for the lead.

Riley has no concept of how amazing she is. She doesn’t know she’s breaking down barriers. She doesn’t know she’s a freaking miracle. She’s just plugging along, being Riley. Doing her thing. Full of sweetness and love.

I am so blessed to be her mom, to have front row seats to watch her fly.

The Teacher

At the end of four weeks of music camp, staff approached us and asked if we might consider sending the kids to two more weeks of theater arts camp. Music camp is an inclusion camp for typicals, and kids with special needs. There are aides assigned to the kids who need them. Riley’s former aide from public school has accompanied her there for three summers now.

Theater arts camp is not an inclusion camp. They don’t generally take campers with special needs. We decided if all the pieces fell into place, they found an aide (Riley’s aide had plane tickets and was heading west for a family visit), we found the money, if Riley and Seth actually wanted to do it….if it was all meant to be, it would happen.

It happened.

Today was their third day of theater arts camp. Riley is paired with an aide she does not know. An 18 year old who will be off to college soon. All the better since she blends right in as a counselor and Riley no longer wants to be identified as the kid with the aide.  As far as the other campers know, this girl is just staff.

So yesterday, when I picked the kids up, one of the main directors of this session signaled to me. She wanted to talk. In private.

My stomach sank. Maybe Riley had a hard time. Maybe being with an aide she didn’t know had thrown her off. Maybe she’s worn out from the four weeks of camp before this. Walking in the door, I braced myself. Four staff members were there waiting to speak with me.

Gulp.

Turns out they wanted to cast Riley in the lead role for the final production. They wanted my opinion to see if I thought she could handle it. It’s a big role with solos and tons of dialogue.

There had not been a problem. Our girl is kicking butt!

So after talking with Riley some last night to feel her out, and determining she’d be okay with it, and after talking with the staff to make sure they have an understudy prepared, just in case….Ms. Riley O’Neil was announced as the lead role at camp today.

Her part in this original production?

“The teacher.”

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

Music Sharing Day

Saturday was the kids’ music sharing day at The Cleveland Music School Settlement, where those receiving music therapy showcased their talents. It had been a very stressful week and the weekend was jammed full of things we needed to do. Todd was working, and I was feeling very overwhelmed. Music sharing day was one more thing to tick off my list.

Todd slipped in just as it was getting started, and Riley was one of the first to go. She showed a music video she’d worked on with her therapist Sarah. Riley played the music in the video. She planned the whole thing. Every scene. Every prop. The story line. She and her therapist introduced it together and the crowd loved it. She was so proud.

Seth, is the “typical” volunteer in Riley’s therapeutic dance class, and they included something of Seth’s in Music Sharing Day, so he would not feel left out. Seth’s video appeared right after Riley’s. In it, he danced full out…demonstrating his impressive MJ moves. The audience raved. It was so sweet. Both kids basked in all the positive attention.

Most of the other students played instruments with or without their music therapists. One student, when her name was called, came running up to the stage area, like a contestant on The Price is Right. She grabbed the microphone and jumped up and down repeatedly like Tom Cruise on Oprah’s couch, saying, “I’m so excited! I’m soooooo excited!” She was so excited, and her joy was infectious. I don’t know what her “disability” was. It wasn’t Down Syndrome, but perhaps something similar. I could not tell you if she was 15 or 50. All I saw was joy, just beautiful joy exuding from her.

“I’m sooooo excited!”

Every care I had coming in dropped off, and I was excited for her too. Her light was contagious. She already had me. Then for her second number, she sang, The Rose.

I sat there, tears welling in my eyes, thinking of all the hard work every one of the precious people with special needs in that room had put in. Not just in music therapy, but in life. How many therapies? How many treatments? How many misunderstandings? How many obstacles had each of them overcome? How much had they taught their families and communities about unconditional love, about joy?

A little later, it was Ronald’s turn. Ronald is a beautiful young adult. His dance class is right after Riley and Seth’s and I always enjoy talking with his mom.  Ronald loves Jingle. Just last week they brought her a huge bone, which she devoured. Ronald is sweet, polite, and kind. And he likes rap music. He took the microphone, turned to the audience, and said, “I like to sing! I like to sing!”

Ronald went on to to performed Jay-Z’s New York, substituting “Cleveland, Cleveland, Cleveland!” for “New York.” The rest of the lyrics were also his own. He rapped about all the things he loves. His mom. His teachers. His sister. High school.

I seriously could not take it. I couldn’t look at Todd for fear of losing it completely. A huge lump sat there in my throat. I looked at the ceiling blinking away tears. It was the kind of thing where if  let it go…I didn’t think I’d get it back.

My kids sat there rapt. Seth bopped in his seat. He wasn’t being polite. He was loving it, for real. They cheered enthusiastically for Ronald. We all did.

What a gift it was to have the opportunity to be right there in the moment with nothing but love in my heart. Love for every student, every therapist, every parent, every family. I felt such gratitude for those who do this work. Those who recognize music is for everyone.

Ronald’s mom gave me permission to share his performance with you. I hope it blesses you as much as it did us:

Love.