Kids belonging to each other

This:

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Thank-you for being my friend Aidan. I really do injoy it. You are awesome and it is fun sitting next to you in specils and I hope we can be friends all school year and next year and the year after that ok? You get the point. Thanks for being my friend.

This is what Glennon means when she says we belong to each other.

And then there is this:

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Not quite sure what it is? You read Rules by Cynthia Lord, right? The main character, Catherine, befriends Jason, a boy who uses pictures to communicate and wheels to get around. She proceeds to draw age appropriate symbols and words for him to use, such as “stinks a big one” in repsonse to the speech therapist who uses baby talk.

This is just one of the reasons peer relationships are so important.

Aidan’s class read the book Rules and then decided to make Aidan his very own picture book. They include important words such as :

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THURSDAY and SUSHI and CUTE and SURF

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WHY NOT? and FLAG

 

and the ever important DITCH as in DITCH school!

 

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I’ve been beating the drum of inclusion since Aidan began school and sometimes it’s exhausting but it’s always worth it. For the past several years, he’s had a team that really “gets it.” Teachers who believe in him, kids who want to be with him, and therapists who push him.

A few weeks ago the teacher sent home a note saying Aidan was the only one in his special ed class who understood that April is the fourth month. He recognized the numbers and sequencing and accurately used his ipad to communicate. Ba Bam!

When educators presume competence, they may actually get results.

And when kids build community, well, anything can happen.

 

 

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Food For Thought


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Food For Thought  April 14, 2014 Edition

Portraits of Boston Marathon Survivors -In remembrance of the one year anniversary of the marathon bombings and the upcoming date of the Boston Marathon, check out this powerful collection of photos and stories.

Upsee Give Away – The latest and greatest invention by a mom to help her child have the experience of walking upright. Lecky is giving one Upsee away on Ellen’s blog. Contest open until April 28. Don’t miss it.

Give me my voice and I will show you my soul - All behavior is communication. This is an excellent article on AAC and how every child deserves a voice.

The Aamazing Aardvark - A brave contribution to the Momastery’s Messy Beautiful project last week from a woman who lost a child.

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You’re Not Alone

Well this is awkward, isn’t it? After writing a post that was shared widely and made quite an impact on people, I’m finding myself with nothing to say.

First I should say welcome to my new readers. Thank-you for joining us on this journey. We all have a story and I’m looking forward to hearing yours. Let’s do this thing called Life together, shall we?

I wrote Wishing Him Gone in hopes that someone else would be set free. And they were, oh my, you were. I read comments here and on FaceBook and in private emails and they were all along the lines of, “Me too.”

I am right there with you. Thank you for sharing this and helping to mend my heart too. – Allison

So raw, so painfully honest and true. I know I’m not the only one.  - Donna

I too cried, beautifully, brutally honest. I feel set free. Thanks for sharing. – Jenny

Been there. Can’t voice it to family and friends… They don’t understand. They would judge. I love my son. But there have been times where the journey has been unbearable. Good days and bad days. And I have learned that’s ok. -Amy

Wow. Just Wow.

I’m honored that people shared themselves so openly with me. If you’re someone who stills carries Bad Mommy Shame and Feels Alone, consider sharing the following posts with the people closest to you.

 

This Side of the Grass

Wrecked

Broken

When Gratitude is Hard

Use them to start a conversation. “What do you think about what she wrote?” “I really get what she’s saying.” “Sounds like we’ve had similar experiences.” If you’re afraid of being judged, let them judge me. I can take it from the safety of my computer screen. Perhaps it will give them a different insight into your life and how to love and support you.

And if nothing else, please hear from me that you’re not alone.

 

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Wishing Him Gone: My Messy Beautiful

Here’s my messy truth: soon after my son Aidan was born thirteen years ago I wished he would die.

Untitled5 Aidan was born with complex medical needs and spent the first three months of his life in the neonatal ICU. When he came home on oxygen and with a g-tube, without a diagnosis, prognosis or any medical staff to reassure us, I just wanted him to die quickly.

It’s such a horrid, shameful thought that I carried my secret burden alone, not even sharing it with my husband. I was lonely, overwhelmed, exhausted, and scared.

Because of Aidan’s medical issues, I couldn’t feed my own child nor did he even have the ability to gaze at me or coo in response to my voice.  He was a stranger, really, hardly present. Those blissful feelings of maternal love were nowhere to be found, though I faked them well enough and smiled proudly at my son in front of others while grieving and hiding in a fetal position at night.

I wanted him to die, not because of who he was, but because of who I was – a mistake of a mother.

I felt responsbile for him, obligated to try to love him, but all of that pressure just left me a sinking ship, weighed down by shame and failure.

When Aidan was almost a year old, another mom of a child with a disability saw my tired, distraught self and told me this, “You probably don’t think you can handle raising Aidan right now but I promise you will find your way. I use to pray for my son to die and now I can’t imagine life without him.

She didn’t know my secret because I told her; she knew it because she lived it.

That friend set me free that day and gave me just enough hope for the next.

I’m thirteen years into raising a child with a disability and I’m not that same traumatized  mom I once was. Sure, it’s still draining and sometimes lonely and scary. I wonder if I’m making the right choices in fighting his seizures. I wonder if my inconsistancy is holding him back from being more independent. I haven’t changed any laws, written policies, nor started a foundation.

But I’m sharing my messy truth today in hopes of setting someone else free. You are not alone. You are living a seemingly unbearable moment. You are allowed to be overwhelmed. Your pain and grief is real because it’s yours. You are not a mistake, and neither is your child.

And here’s my beautiful truth:

IMG_5868 IMG_3091 My willingness to step into fear and push boundaries and learn new things and support other parents and get involved and love this incredible child has changed me. The hard work of finding my way has been messy, rarely easy, but always worth it.

The truth is I can’t imagine my life without him because, really, isn’t he beautiful?

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This post is part of the Messy, Beautiful Warrior Project, a blog link-up for the paperback release of New York Times Bestselling memoir, Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life by Glennon Melton of Momastery.

 

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Momastery

Meet Glennon, a Dot Connecter with a cool name.

She’s the author of the book  Carry On, Warrior, which is one of those pee in your pants funny and heartbreaking all at once books. Glennon is brave enough to speak the truth.

 

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She blogs at Momastery and has started a non-profit which hosts these amazing Love Flash Mobs to raise money for individuals in need.

My favorite piece that Glennon wrote is Quit Pointing Your Avocado at Me about the so-called Mommy wars.

And she speaks the truth about grieving and being there for each other which I pretty much love because hurting with each other and building community is kinda my thing: (this is a video so subscribers will have to click through to blog to view)

https://www.youtube.com/watch?v=gm_B03H2Ik0

She also wrote this raw piece about her Sacred/ Scared.

In celebration of the release of her book in paperback this week she’s invited bloggers to share their very own Sacred/Scared and she’ll being keeping them on a page on her blog so we can all meet each other in our own messy, brave way.

I will be sharing mine tomorrow. In the meantime, check out these links to read more.

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Inventing a Day

Tiny Superheroes

At the age of 41 I still find myself wondering what I want to be when I grow up and dreading the question of what I do.

If the real question is how do I earn money, than the answer is I teach piano. I love it and it fits perfectly into my life.

If the what I do question is integral to who I am, than I supposed I would answer that I’m a mom.

If I’m on an airplane than the answer is everything from I lecture at Yale to I’m in the medical field to I’m a writer. Depends on my mood and how far we’ll get into the conversation before I’m called out as a fraud. While none of these are actually true, they are based on just enough of a smidgen of truth to be trui-sh.

Being the mother of a child with a disability has changed how I spend my time and what I need to learn along the way.

One of the most important lessons I’ve learned is that I can’t go it alone. It’s too overwhelming and can get quite lonely. I’ve had to learn how to ask for help. I’ve had to learn to reach out.

So while there are many ways for me answer the question of what I do, I’m currently landing here - I connect the dots. I’m a dot connector. Is that a thing?

I love getting together with other parents and offering encouragement, a listening ear, a three ring binder and hole punch to keep doctors’ notes, a list of service providers, or copies of letters to insurance companies. I really enjoy being the been there done that mom and knowing that someone else will benefit from my experience. Certainly others have done that for me.

A few years ago I had myself a big ole pity party when everyone else was wearing blue for autism, green for CP, pink for breast cancer, purple for Epilepsy. Aidan didn’t have a diagnosis, not even Epilepsy at the time. Where was the color for the kids who don’t fit in?

So here in my quiet little corner of the internet I decided to declare Undiagnosed Children’s Day in April and claimed the color blue for my cause. I invited Maya’s mom, Dana, to join me as she was the only other mom of an undiagosed child I knew at the time.

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Dana let me know about SWAN (Syndromes Without A Name). Good grief, an entire agency dedicated to undiagnosed children! SWAN, both in the US and the UK, got in on the action of making a little noise and raising awareness and helping me feel a little less alone. They promoted Undiagnosed Children’s Day.

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Then there’s Robyn of Tiny Superheroes. She’s a mom who sews capes for our kids with disabilities. She turned her cape sewing into a business and has dedicated it to raising awareness about different diseases.

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I contacted Robyn and asked if she would like to raise awareness for kids who DON’T have a diagnosis on this day that I totally made up; the day that SWAN validated and made into a real day so my pity party would have less hudling in the corner by myself and more heck yeah we’re with you. Undiagnosed Children is the official mission for the month of April for Tiny Superheroes. Can I even tell you how much I LOVE the slogan, “Some syndromes don’t have a name. All tiny Superheroes do!” I’m buying the t-shirt, for real. You can too and $5 of each purchase will go to SWAN and SWAN will continue to work with families to help make them feel a little less alone.

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So yes, I invented a day. I connected the dots. I brought people together in hopes of making everyone feel less alone. It’s what I do. I would love to have you join us.

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The Nitty Gritty

What: Undiagnosed Children’s Day

When: April 25th

Who: YOU! Wear blue on April 25th and post a picture on Facebook or email me. Share this post or any of the links below. Get involved in the following organizations:

Who: TinySuperoes are selling t-shirts and sweatshirts with money going to SWAN. You can also support a tiny superhero at anytime by buying a cape. And for free you can get in  on the “action” part of their mission.

Who: SWAN in the UK is starting an “It’s A Mystery” campaign encouraging everyone to get creative and get involved in talking about what it means to lack a diagnosis.

Who: Follow SWAN USA on Facebook as they continually provide information and support there.

(For those of you who are sticklers for details, yes the day has changed. It’s now officially the fourth friday of April every year. That’s helpful to SWAN for planning since they are a real organization and not just one mom throwing herself a pity party and making up days. Also, if it matters, I’m not an employee of any of these organizations.)

 

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Food for Thought

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Food For Thought – March 31, 2014 Edition

First do no harm: How we failed Justina Pelletier and her family - I have so many BIG FEELINGS about the Justina Pelletier case – about parents and doctors working together, about parents being seen as valuable members of the medical team, about doctors collaborating, about rare genetic and mitochondrial or UNDIAGNOSED diseases being treated. This article will give you the basics about this teenager who is being held at BCH now without even parental visitation rights and is getting sicker and sicker under the “care” of the State. This is the kind of stuff that keeps me up at night.

Go baby go!: Early mobility ain’t no joke – I also have BIG FEELINGS about early mobility. There’s just so much evidence that mobility effects cognition and I’ve seen it with Aidan. I’m working on a mobility video/page about our journey to put on the blog. Stay tuned for that, but in the mean time, check out this cutie on wheels.

This is how quickly it goes – And finally, this piece, because I also have BIG FEELINGS about how soon Liam will be leaving the nest, but let’s not talk about it, ok?

 

 

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