Matthew

This photo was taken in July at Todd’s parent’s 50th anniversary party. The man is Todd’s cousin Rob. His youngest son has cerebral palsy and other health issues. Rather than have him stuck in his new wheelchair, Rob carried him that whole evening. We all marveled at how he never put that little guy down. His devotion was humbling. His wife is battling breast cancer, but she was there, and in good spirits. Little Matthew was happy that day. He was flirting with Todd’s cousin Kathy, and she was baiting him to say she was “pretty.” He said it every time.

Sadly, little Matthew died this morning. He recently became very sick and his organs stopped working.

Rob’s wife underwent major surgeries less than two months ago. She’s barely had any time to heal.

How much can one family bear?

Please send them your prayers. Please pray for Rob and Martha. Please look at little Nicholas on the right in the photo above. He’s lost his brother today. His mother is battling cancer. Please hold this little boy in your heart.

A benefit is planned for this family. If you would like to donate contact me privately and I’ll give you details.

The Sessions

HT and I saw The Sessions over the weekend.

It is the true story of a man who had polio when he was a child and spends most of his time confined to an iron lung. He’s never had sex, and would like to experience it so he hires a sex surrogate to help him accomplish that goal. As you can imagine he has tons of anxiety about the whole situation.

Helen Hunt plays the professional sex surrogate who helps him.

There is a lot of sex, a lot of nudity in the movie, but none of it is gratuitous.

And I think we should all have a moment of silence in honor of Helen Hunt’s body. Holy hot stuff. Not just for her age, but any age. What a brave actor.

And John Hawkes, the actor who played Mark O’Brien, the main character? I had to look him up to see if he really was disabled. His performance was so good I couldn’t tell. He was brilliant, brilliant, brilliant.

Below is a video of the actual surrogate that Helen Hunt portrays in the film:

Ah, life. It’s just a never ending opportunity to face our judgments, isn’t it? And hopefully, if we take it, an opportunity to let them go.

Are holiday e-cards the way to go?

Okay, I’m really not working for Melissa at Ardissa. I’m not getting paid. It’s just that she’s offering a special on her holiday e-cards today and I wanted to let you know, and also have a little discussion.

They’re here!! Send the card that lasts a lifetime, with our holiday video e-cards. Starting at $11 (unlimited sends!). PLUS, use code CYBERMONDAY and get $2 off today only!

After chorus yesterday, Melissa was telling me she got lambasted at a crafting type fair recently. Apparently some folks have really strong feelings about holiday cards. They treated her like she’s the devil for getting her digital holiday card groove on.

Do you have an opinion on this?

Might there be room for both traditional and digital?

Will we all be going digital in the future and this is just the backlash at the beginning of a trend? People resisting change?

Should we save trees?

Is it more important to hold onto tradition?

Truthfully, what do you do with all your cards when the holidays are through?

I used to buy cheapo little photo albums and put the cards in them, (cutting them down to size to fit if need be). When the kids were little this was a wonderful way for them to know who the people in our lives were, since we lived so far away from most of our friends and family. Over the last several years, though, sad to say the cards just get tossed after the holidays.

What are your thoughts?

Do you even do holiday cards at all?

Riley’s latest video

The following is something Riley has been working on. Film making is “her passion.”

About her latest video, in her own words:

This is a story about a girl who is bullied because of her weight and commits suicide. This video is just to show people what might happen if you bully someone. FYI, this video is not based on something that really happened. Although this video is made with Littlest Pet Shop toys, it is geared more toward preteens and teenagers.

Our girl. She’s somethin’ else.

Love.

Happy Thanksgiving!

I’m thankful for everyone who reads this blog. May you have a happy Thanksgiving. May you remember to breathe. May you eat, drink and be merry. May you be in good health. May you know that you are loved.

 

*Melissa at Ardissa Video let me and several other people be testers for her new business. She’s offering holiday e-card videos like ours above. No hand cramps, no licking envelopes. No searching for addresses. No stamps. All you have to do is send the pics you want used. She starts taking orders Monday, November 26th and is offering very reasonable prices!

Thank you, that was three.

I love Seth’s teacher.

Every morning the kids have a meeting, in which they sit in a circle and are given the opportunity to share. She picks the first kid, and the child shares something and then takes three questions from his/her peers. The hands are flying, but after three questions the child standing and sharing says, “Thank you, that was three,” and then picks the next child who gets to share.

That child shares, takes three questions and picks the third and final child who will share that day.

Not every child is picked to share. Not every child gets their question answered. They learn to gracefully deal with being disappointed, but given that the teacher picks the first child to share, she can make sure no one consistently gets left out.

I sat in on the morning share time Seth’s first day, and there is something adorable about seeing your kid, standing there in his little khaki pants, looking like he’s running a business meeting and saying, “Thank you, that was three.”

Seth is busy learning all day. They have P.E. every day, which is wonderful if you are a P.E. loving boy. (P.E. everyday would be awful for Riley, which is why they go to different schools). He’s jumped back into school with such grace. His teacher was homeschooled herself so she understood a lot about where he was coming from, and was so supportive. Even though Seth was afraid at first, he was willing to go. Willing to try. He’s doing really well. I talked with the students the first day about his tics and it has not been an issue. He’s been there a little over a month, and not one child has made a remark about them to him or to his teacher.

At the end of the day I pick him up. Each child has to run to their teacher, tell her they see their parent in the carpool lane, and shake her hand good-bye. It kills me every time, seeing him act like a little man, so formal, shaking hands.

Driving away from school he tells me about his day and when we get home, I eat him up.

 

 

 

My day isn’t complete unless I’ve tickled the snot out of him.

He loves it. I love him.

Amen.

 

Poses, Yolanda Dominguez, Messy Nessy Chic, and Us

I came across this post the other day at Messy Nessy Chic. It’s about “Poses,” a project of spanish artist, Yolanda Dominguez. I think by now we all know that models don’t really look the way they appear in magazines. Photo-shopping is everywhere, blah blah blah, but she is bringing into awareness that aside from being unrealistic looking, women are also often depicted as either weak or crazy, or both.

The kids and I watched the video and had a great discussion about it.

Something tells me they’ll never again be able to look at magazines which feature this ridiculousness without noting it.

And making fun of it.

Which is a heck of a lot better than buying into it, don’t you think?

Amber

My friend Amber is amazing.

See for yourself as she speaks at the school her children attend.

She has a story with so many layers, so much texture, you just wouldn’t believe it. There are few people who could have come through her childhood with their heart in tact.

But her history didn’t break her. It grew her. So many of us who have experienced childhood trauma walk around feeling unworthy. Less than. Amber is not less because of her history, she is MORE. She is purposeful.

You wouldn’t know from the video in her post, but she is a total bad ass when called for. You want her in your corner and woe to you if you mess with someone she loves. What I love about the video, is it shows her sweet, caring heart. It shows her bravery. Her love. She is true and unashamed. By simply being herself she gives others permission to be true and unashamed as well.

So proud to call you friend Amber. You are an amazing public speaker.

Keep doing it.

Kirsten Fawcett-Dubow, social worker, Cleveland

I want to tell you about my friend Kirsten Fawcett-Dubow.

She lives on my street and our kids are the same age and used to go to the same school. She co-founded the Girls on the Run chapter at the school and when I became a volunteer we got to know each other better.

She has a way of acknowledging the feat I have before me in raising my particular kids, without that panicked “slowly backing away” vibe, and also without the dreaded pity.  I always feel supported by her. She acknowledges and respects what I’m doing, and she’s championing me, but she’s not one bit worried I can handle it. Which is more than I can say for myself half the time!

When I was looking for a place to hold a retreat for autism moms? It took her two seconds to find one. Her mom has a lake house, which I didn’t even know about when I put out out the call to the Universe, (and I quickly learned where Kirsten got her generosity gene from). She also found me a yoga teacher to volunteer for the occassion.

Kirsten hosted the first slumber party Riley ever was invited to. Riley lists it as among the three best occasions of her life, along with getting her service dog Jingle and going to Mexico.

Kirsten’s daughters are full on adorable. They are kids who walk around with a light inside them, the kind that comes from being well loved.

Kirsten is a counselor at a local school district and she recently introduced Seth to another boy who has PANDAS. A cool, older boy who could offer him advice on what to say to peers and how to advocate for himself. It was the first person Seth ever met who also had PANDAS. It made him feel better not to be so alone. She intuitively knew it would. She also knew it would be good for the other boy to be able to offer guidance to Seth.

I could go on and on. Kirsten and her husband took the kids for a few hours no questions asked when Todd was in the hospital. Last year they helped me by taking the kids overnight so I could give Todd a night away as his Christmas present. To them it’s no big deal. To us it was our second night away in about ten years, having kids we’ve not been able to leave casually. It was a very big deal.

Kirsten even wrote me a letter of reference when I went to Divinity school. What? You didn’t know I went to Divinity school? Sadly, it didn’t take, but her letter! It was so lovely and heartfelt. At the time we talked about how great it would be if we all wrote letters of references “just because” for our friends. To let them know what we think of them. I guess this is my letter of reference for her.

In order to be there more for her family, Kirsten has recently re-jiggered her employment situation and she is going to be offering counseling services to new clients. She is working at Family Center by the Falls. Local friends, please spread the word! Spread it far and wide! She’s exactly the kind of counselor you want in your corner. Her new clients are going to be so blessed to have her. Soon I’m going to have a little button on my side bar under “sponsors” where you can refer back if you are looking for her info.

For everyone else, I ask you to consider writing a letter of reference for a friend in your life, just because.

Just because it feels awesome to do so.

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.

 

OHIO EARLY VOTING

A two hour wait with a line around the block.

I didn’t hear one person complain.

We were surprised when we arrived to see Stevie Wonder walking down the street with a big entourage. He was just leaving. People were so happy to see him, asking to shake his hand. He’s still got the long braids in the back, though you can’t tell from this photo. He was in town for a get-out-the-vote rally at Cleveland State.

The long line continued inside the building. When we finally got up to the booths, it was really tight, hardly any room to move. I felt very claustrophobic. Some of the ballot confused me, and it was so loud I could hardly think. I wondered if there were any provisions for special needs voters, because I was starting to feel like one. I had a list of Democratic candidates and issues and even still, it was challenging for me until I got in the swing of things. I think it was because I knew the kids were tired, and I couldn’t keep my eyes on them, and felt pressure to hurry up. And I was in the last booth, right next to the box people were dropping their ballots in so it was extra noisy and bumpy for me. The booth where I was writing kept being jostled. HT had no problem though. He finished first and took the kids outside and then I got it together. We felt this election was so important we wanted to really involve the kids in being part of history, so we wanted to be there, but next time I might just do absentee from the comfort of my kitchen table!

Our kids were were troopers. The experience was worth it.

We went for Thai food after.

And carved pumpkins later. *

In between I got my hair cut, again. More on that another time soon.

A full day.

It’s special to live in a swing state.

I hope we helped.

Love.

*This photo was from the first pumpkin carving. Those pumpkins were smashed on Halloween by some hooligans whom we need to hunt down and maim pray for. Ah, well, it all worked out. More toasted pumpkin seeds for us.