This picture has nothing to do with any of these quotes except that they were having a good time. Which often is happening when we are making a Mutant Saying.

Quinnlin, telling us about her substitute: “We didn’t have to learn anything all day and she was so nice!”

—–

Gage, texting with his BFF on the day he was in the hospital. She asked the time of his procedure.

Gage: “I told Laura it was ABOUT 12:30 because at the hospital, time is not normal.”

——

Gage, in the hospital and hungry. Playing with new iPhone.

Gage: “I’m so hungry.”

Me: “I know, I’m sorry, but you can’t eat.”

Gage: “All I need is a food app!”

——

Gage, grinning: “I can tell we’re not going out for dinner tonight.”

Me: “Why?”

Gage: “Because you took your bra off.”

————-

Me: Loud sigh

Quinnlin: “I know. (Pause and Sigh) You’re having a sensory overload.”

————

Quinnlin: “Do I have autism?”

Me: “No, you have delays because of your vision disorder and you were sick for a long time. You have developmental delays.”

There is a pause and for a brief moment I think she is disappointed.

Quinnlin: “Oh, I just thought I would ask because a boy said I probably had autism and I have heard a lot of kids have it.”

Me (thinking…make it positive!): “Well, having autism isn’t original…there are only 3 kids in the world who have what you have!”

————-

Me: “I sure am going to miss you. I have to get the kids up for school for so many days in a row.”

Julian: “Are you going to miss anything else?”

Me: “I’ll miss you taking out Lucy and the trash, too. Oh, and you!”

————

Me: “I love you.”

Julian: “Love you, too.”

We kiss.

Quinnlin: “Ewwwwww. Do you guys have to do that?”

Me: “You mean kiss? Are you kidding me? I just want you to see us doing something other than doing stuff for you!”

Quinnlin: “Why would you want to do that?”

————-

Julian: “So, are we going to do anything for our anniversary?”

Me: “You mean our 1st 17th, since we celebrate two 16s?

Julian: “So, our 18th. Yes.”

Me: “I don’t even know why we have to put years on it, it’s just one long period of bliss.”

Julian: “Yeah. That’s what you call it!”

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May 09, never afraid, risk taker.

Two years ago tomorrow (around lunchtime) my beloved and I drove our son to a mental hospital to admit him for an unknown amount of time. It was for his safety. It was for his mental state. It was the most gut-wrenching thing I’ve ever done.

He was not well and we couldn’t help him any longer. We literally did not know what else to do. It was, by far, miles harder than facing kidney failure, dialysis and transplant. For those aliments, largely accepted in mainstream media and our culture as not being the patient’s or parent’s fault, we knew what to do. We knew what the treatments were. Not so with mental health.

Last year, One Year after Driving Away, I wrote this about how I was sitting at my desk even 12 months later weeping about what Gage and we all went through. Two years later and I’m still not finished crying, but I suspect some of my tears are relief that my son did not follow through on his wish to kill himself.

When I talk or write about suicide and our nine year old hurting boy, I always pause for a few seconds and wonder if I should. I wonder if the world is ready for these stories. I wonder if he’ll be accepted for his unique charm and view at life or if he’ll face hate placed on him by people who do not understand that mental health issues have nothing to do with a person’s ability to not just “feel better” or to “be happy.”

I use words like “die” and “kill himself” and “suicide” because if people can’t even read them, hear them or say them it enables a breeding ground for people who suffer from depression to hide away when they should be reaching out. I think it’s easier if we talk about it. Say the words. Attach those words to people like Gage.

When I talk to Gage regarding blogging about that time in his life when he wanted to die he often says, “Yeah, it was bad.” We constantly talk about how us telling his and our story will help someone like him one day and how much compassion he is creating from people who just didn’t understand before we shared his depression and recovery. Until we – and those who judge him – acknowledge that mental health is as important as his medical health there will be people who don’t and will never want to understand.

A perfect example is a parent of a former classmate of Gage’s who constantly judged him (and us). Not only did she, she encouraged her child and others to do the same. She placed less value on Gage’s life than that of her children and other typical children. She made Gage’s life harder by treating him differently when she came into contact with him and other kids because of his behavior and attitude, which was due to his mental and physical health challenges. She passed on her bias and lack of compassion to other people, making it even harder to educate and change minds.

You know what though? There are so many people that tell us they’ve learned from knowing Gage’s story. They’ve said they judge less and let in more compassion. Why? Because they’ve been able to see Gage’s transformation from sad, suicidal boy, to thriving teenager. They’ve seen his transformation was possible with proper treatment. He’s gone from wanting to die to wanting to do. Do what? He wants to invent things and learn about history. He wants to go outside and ride a bike, he wants to go through trash and find a treasure. He wants to hold his hamsters and read interesting books about adventurous boys.

He says, “When I grow up.”

There was a time when he couldn’t say it because he couldn’t picture it for himself. When he was 6, as he told me recently, he overheard a doctor tell us he could die. I think his survival depended on not thinking about the future. I think he held tight to the possibility he could die and quit thinking about the future, then PTSD and depression set it and it was too much. He moved from thinking he could die to wanting to die in a matter of 8 months.

He’s not that boy anymore. I recently ordered a brick to be placed at his new school and the words speak to the new boy he is; one with hope and happiness. I wrote a lot of iterations of it before we all decided on the following…

In Honor of Gage * Smile Maker * World Shaker

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“How was your day, honey?” I said, like I do every day she bounces in my car.

On this day she is holding stapled sheets – like most Tuesdays or Wednesdays – along with her jacket and messenger bag. She isn’t in the car more than 5 seconds before she pushes the stapled sheets in my face, she says…

“I hate that they blow up my work like this because it makes me feel dumb and no one else has to do this and why can’t I just be normal?!!”

Sigh.

She’s 10 now and is noticing how she is different from her friends in her everyday life. Gage doesn’t have these issues, because he largely does not care what other people think of him. It is a characteristic that has served him well and likely will in the future. Quinnlin isn’t like that and as soon as she noticed she had accommodations that her friends didn’t have she’s hated it.

• Her removal from the class to work one-on-one? “I’m so stupid.”

• Modifications made to worksheets? “Everyone will think I am stupid when they see it.”

• Sitting close to the board so she can see better? “Why can’t I be normal, like everyone else?”

• Printed out sheets from the board so she doesn’t have to track back and forth to work? “I hate my stupid, stupid eyes and what they can’t do!”

• Testing in a different room with a small group? “Why can’t I just be like everyone else and NORMAL?”

To any of the above questions I ask the ever-present questions, most likely asked by every parent of a kid with differences, either to the child or privately to themselves: “Did someone say something? Did someone make you feel bad about it?”

I asked those questions on this day too, as she pushed the stapled sheets in my face. “No! It is just me, me, ME! I FEEL STUPID when people can see the sheets blown up! I keep telling the teachers I DO NOT NEED my work blown up but they say they can’t!” (because it’s in her IEP)

Huge tears fall. Unusual is the fact that in my car there is not an abandoned napkin for me to hand to her so she keeps wiping her face on her too-long sleeves that are wrapped around her knuckles. He breathing is quick and rhythmic. This cry isn’t the one that we normally hear when we’ve offended her by rules or her brother has wronged her.

This cry is painful. Deep. It’s the cry we know is inevitable as a parent, but we wish we’ll bypass due to some cosmic intervention. It’s the cry that seems to go on longer than it is in real time because it represents the deep pain of lack of self confidence.

It’s the cry of the pain of realizing you’re different.

When we can make a Quinnlin Modification to a modification currently in place, I’ve wanted to try. So we will try to do the worksheets of math at “normal” size and she’s agreed to have language arts work blown up because there are 4 others that also have theirs blown up.

One of the hardest things about helping Quinnlin navigate growing up and realizing her differences is trying to get her to understand we’re all different. That is little comfort when the differences hits you in the face daily. It is little comfort when you know others know you’re different. It is hard to teach there is beauty in difference to your daughter when one hand holds stapled, enlarged worksheets and the other holds a too long shirt wrapped around her knuckles wiping the large tears.

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Please note the on the floor because “models have fans blowing on them.”

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I’m also thrilled to announce that they have a new blog coming (Yes, I’ll let you know when to goes live!) and we’ll be sharing Quinnlin’s journey, and a very special friend will be along for the ride.

When I asked Quinnlin if she wanted to share the story of her and a very special friend on a new blog for Build-A-Bear Workshop she said, “That’s so cool! It’s like I’ll be famous!”

Until then, you can see some cute pictures over at this post sponsored by Build-A-Bear Workshop!

See? This is Quinnlin, enjoying having just created one of her many very special friends at her 5th birthday party!

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-       to love them for them and never try to change the core of who they are,

-       to make my kids’ lives as easy as possible where their disabilities are concerned,

-       to ask that exceptions be made to to help them and improve our family’s quality of life,

-       to help navigate the healthcare system for them while teaching them how to do it for themselves if they are capable,

-       to protect them from people who want to do them harm; no matter the form,

-       to fight for them and sometimes to fight for them, in front of them,

-       to work with people with personalities that don’t mesh with mine when they can help my kids,

-      to see the best in them and help them see it too,

-       to seek the best treatments available,

-       to work a system that needs to be worked,

-       to help them live full lives, whatever that means,

-       to help them celebrate their accomplishments,

-       to not shame them or let others shame them,

-       to give back/volunteer at something related to their special needs,

-       to help them feel included,

-       to reach out when I need support and offer it when someone needs it,

-       to educate and inform people when they are truly interested,

-       to always strive to do better by them,

-       to make sure I build and keep relationships that surround them with love,

-       to find an avenue to something to meet a need,

-       take time for myself,

-       to give them a break when they need it,

-       to push them when they need it,

-       to never give up.

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Quinnlin’s & Cheryl’s kidneys

Yesterday my friend Cecily sent me a link to a blog post by mom, Chrissy, who had, just a day earlier, been told her daughter’s life wasn’t worth the amount of effort it would take to have her receive a kidney transplant from a living (known to the family) donor. Because, as the doctor put it, she was “mentally retarded.”

Here is the heart-wrenching post from Amelia’s mom.

I read the words and I couldn’t believe it. As the mom to two kids who’ve had kidney transplants, I could certainly put myself in her position. My kids have developmental delays, 3 vision disorders, and one has mental illness. Any of those same arguments could have been made to us.

We have no idea what the kids’ futures hold. Can they work? When will they get sick again and need the next kidney? If Gage’s mental health is unstable, does that make him unworthy of a new kidney? Maybe CHOP would have denied him, because who knows, when he’s 30 he might not take his meds.

I quickly left a comment that I would gladly come and fight with her when she and her husband go in front of anyone to fight this. I would happily pay my way to share our story of two kids, who have complex medical needs. And how some doctors, like this one at CHOP,  could see that they, too, didn’t deserve to live. My kids have uncertain futures (like all of us) but are thriving on their donated kidneys all because the doctors a Children’s Healthcare of Atlanta (and UAB) valued their lives.

Little Amelia is not without support. Please go and sign this petition that Sunday of Extreme Parenthood started.

CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.

File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.

Saying Amelia shouldn’t receive a kidney is like saying Gage and Quinnlin shouldn’t have either. And my mind goes to very dark places when we think about that path.

I was in the car all day with the kids when this story broke loose and we talked a lot about it and Gage and Quinnlin tried to think about life if they’d not been approved by a team of doctors who said they had too many special needs.

They both agreed “that is stupid.”

“Is she gonna die?” Asked Quinnlin, then turning it around to other kids.

“They should give a kidney to anyone & shouldn’t matter if they have a disability.” said Gage. Then he said, “what, because I have disabilities, they would want my kidney back?”

They should know what they’re talking about.

Now go be outraged in honor of Amelia.

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I wrote an entire post on Support for Special Needs. I wanted to do it because in all of 2011 I’d hope to create art work using photos of the kids’ are so I could get rid of the two bins. I did it! Well, it was within the week of 2011…look and see what I did over Winter break.

My post at Support for Special Needs is brought to you by Snapfish by HP!

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If I felt that way, I can only just imagine what he felt like.

On many occasions, I’ve read the blog of Jenny, The Bloggess, (one of the most well-known and funny bloggers), and with interest read about her fight with depression. A couple of days ago, she wrote this post about a recent bout of depression. She also wrote of her self-harm, which she disclosed, with trepidation, for the first time. The support she received was truly unbelievable. She did an amazing thing for mental illness awareness. She, most likely, has just made a positive impact on how the world will treat Gage in the future. Thousands of supportive comments and numerous times the post was shared on the internet.

I can’t express what that means to me. As early as three years ago, when I was asked not to blog about Gage’s mental health issues (by the school) and we made the conscious choice to do so, I longed for the day when there would be more awareness. I wanted to share Gage’s story because someone has to and the more of us that do, the easier it will be for Gage and everyone else who suffers mental illness to be judged on the content of their character, not their illnesses.

Gage had a lot of the warning signs of a clinically depressed person. Nearly all actually. Sadness, beginning actions of self-harm, quit doing everything that gave him joy, remained unconnected for months, and he would rage for hours unable to express himself.

Gage will always be at risk. I type those words with fear and hope. I am hopeful because we’re better equipped and so is he. He will have the experience of having been through it and come out of it and I’m hopeful he can draw on that experience when it gets hard.

It’s not been easy sometimes, especially when other parents take it out on your kid and teach their kids to do it, too. There were a several parents (mostly moms) that did this form of bullying against Gage. There are still a couple of parents I have to see occasionally at school functions and they are a constant reminder that people will smile at you one second then try to break your kid’s spirit the next.

All because they lack understanding and compassion.

Maybe with more awareness it won’t always be like this; maybe my kid will have it easier because of Jenny and my friend Jen, who shares her story with a rawness that will leave you breathless.  I hope that with each year it gets easier for Gage to be out in the world without retribution like he has suffered because of the courage Jenny and Jen have shown.

Thank you, thank you. You’re changing the world, one story at a time and while you’re sharing your stories, you’re very much likely changing my son’s world.

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11 Things About 2011

1. 2011 was the year Gage left elementary school and the love and protection of a dedicated group of educators who single highhandedly held him together with duct tape. Plus, I miss having both kids at the same school.

2. I will not miss the several hospital stays for pneumonia, asthma, and infections.

3. I made some great new friends in 2011.

4. I picked up some incredibly nice clients and kept some incredibly nice clients.

5. I spent time at the beach alone in 2011 and long for it again.

6. I spent time with friends away from the hustle and bustle of our lives.

7. In 2011 my kids flourished.

8. In 2011 I spent 2 glorious days alone with my husband for the first time in years.

9. In 2011 my blogging life intersected with my real life in awesome ways.

10. In 2011 I traveled with my family internationally and we created incredible memories.

11. I watched my daughter laugh with Disney characters on a cruise.

12 Things About 2012

1. We’ll celebrate 18 (accurate) years of marriage.

2. My 2012 resolutions are few and obtainable.

3. I’d like my kids to continue to flourish.

4. At Support for Special Needs.com hopefully will help more people feel supported.

5. Volunteer more.

6. Oh man, in 2012 I’d like to save some money.

7. In 2012 I’d like to think about life without limits.

8. Write more.

9. Play more Yahtzee.

10. Laugh more.

11. Help the kids grow with responsibility.

12. Grow friendships with genuine people.

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