Life Undiagnosed (Part 1)

Some syndromes don’t have a name….

AidanProfile

 

My son was born thirteen years ago and spent the next three months in the NICU because he wasn’t eating or breathing well on his own. He had every test under the sun – myriad of genetic testing, EEG, MRI, muscle biopsy etc. When no answer was found, he was sent home on a g-tube and just a touch of oxygen with no diagnosis.

After six months he was strong enough to breathe on his own.

After two years he was strong enough to eat on his own.

He was followed by a number of specialists and has continued to undergo a variety of tests. More genetics. Swallow studies. EEGs which eventually lead to a diagnosis of Epilepsy. He has tonic, myoclonic, and absence seizure that remain uncontrolled after seven failed medications and two dietary treatments.

He has low muscle tone which effects all major body functions.

My son requires assistance at school and therapy outside of school. He needs help with every single activity that gets anyone through the day – eating, dressing, moving around, toileting.

He doesn’t speak and, because of his limited motor control, has a hard time accurately using technology for communication. For this reason, we don’t know much about what he thinks or how he feels, what he needs or wants.

Because he has gotten stronger over the years and continues to make progress, the specialists have ruled out many progressive diseases. This is, of course, good news for us.

Several times a year, I sit down with a case manager or special educator or medical intake person and answer questions about my son’s history and abilities and challenges. Every questionairre starts with this questions, “What is his diagnosis?” Each time I answer with this, “Undiagnosed developmental disabilities.” It either fits in the box or it doesn’t. It’s been translated most frequesntly as Cerebral Palsy, once as quadripelegia (don’t get me started on that one), often as multiple handicaps, once as Autism, and when I’m not looking as MR (which isn’t a real diagnosis anymore by the way……)

His syndrome doesn’t have a name but this is what it looks like.

*****

If you have a superhero who has a syndrome without a name, check out SWAN on FaceBook.

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Food for Thought

IMG_3327Food for Thought – April 21, 2014 Edition

Undiagnosed Children’s Day is coming up this friday and I want to share what I’ve written in the past. You can join us by wearing Blue on friday and posting on Facebook or sending me an email.

Undiagnosed Children’s Day 2013 - probably the most comprehensive piece I’ve written about why it matters.

Elevator Speech – Because sometimes you need a tidy answer.

Inventing a Day – What’s happening this year for Undiagnosed Children’s Day

Genetic Testing – on my response to people who can’t believe Aidan doesn’t have a diagnosis….and some science.

Undiagnosed Children’s Day – from Dana of Uncommon Sense

 

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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.

 

Glennon

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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