Unicorns Are Real

If you follow me on FaceBook, which you totally should, you would know that I saw TWO unicorns today.

If you define unicorns as beautiful, miraculous creatures that are magical, which Websters most certainly does not, but I do, so there.

But let’s back up to my first unicorn sighting several months ago. You will NEVER guess where the unicorn was frolicking. Seriously. I’ll give you a hint…it’s the LAST place you’d think of.

Exactly. An IEP meeting. In the early years of IEP meetings (school meetings for Aidan) I had my share of sleepless nights, crying, and even a day of vomiting. There is a narrative out there that goes something like this:

Schools only care about money. Teachers only care about what’s easy. All of the professionals at an IEP meeting think they are smarter than you. School personnel will make you pry services, accommodations, and modifications out of their cold, dead hands. Parents take heed…. without a swanky lawyer your child will just waste away at school.

Hence, the vomiting. While it’s obviously not a helpful narrative, there are enough IEP horror stories out there to keep it alive. My early IEP meetings were emotional and frustrating, but they were most certainly not horror stories, and yet my stomach still clenches a little before I have to sit at that long table with all of the people who have compassionately gone out of their way for my son.

There have actually been unicorns at my IEP meetings for the past several years. (We miss you so much Ms. L) This time it came in the form of a general education teacher. Looking at special education from the outside can be incredibly helpful. While we were discussing Aidan’s driving skills and what he may or may not be able to see, his general education teacher commented that quite possibly Aidan was crashing into things because, really now, doesn’t that sound like fun? YES! Sometimes it’s best not to over think things.

The next unicorn at that meeting came from Aidan’s speech therapist who has been trialing a free speech app with him. He’s been doing well with it so she asked the school to buy the complete app for his iPad. Remember the prying things from cold dead hands? There was none of that. I just signed a magical form and he gets the app. Poof.

I requested that an AAC specialist help us set up the new app and follow Aidan regularly to get him started. I have confidence in my team and I appreciate their skill set and am especially encouraged by their confidence in Aidan. However, Augmentative and Alternative Communication (AAC) requires specific expertise.  Because of the above narrative, I’ve been bolstering myself to make the case for this service. Enter today’s first unicorn…the school agreed to bring in a specialist without me even having to pull my hair out, cry or puke.

Let’s get Aidan communicating and find out what he’s really thinking. YIKES!

Then I took Aidan to the neurologist. These appointments aren’t really stressful but they’re not particularly fun either. They go something like this:

Aidan still has seizures. That really stinks. His meds aren’t working. Here, let’s try another medication even though it probably won’t work either. Then, let’s have this same conversation in six months when we’re both older and more tired. 

Aidan has seen the same neurologist since birth. He listens to me and answers my questions. Today I was determined to ask about Medical Marijuana. I completely understand why doctors would have reservations about MM. It’s not FDA approved, there isn’t enough current data, and it’s a little bit not particularly legal at the federal level. With their livelihood and reputations on the line, I understand their hesitation. Enter the second unicorn…our neurologist said not only that he would eventually approve it, but that he can get the necessary second doctor on board as well.

Before he’s willing to say that Aidan has failed reasonable treatment options, there is one more pill to go. I’m waiting for my third unicorn as this would be cheap and easy with possibly no side effects.  It’s been known that some infants with seizures have a wacky vitamin B6 issue. Aidan didn’t have seizures as an infant but most recently it’s also been concluded that large doses of B6 can help older kids with seizures (I’m not a doctor and this is not medical advise. Always consult your physician before taking what I say as truth).

So, seriously, a few vitamins could make this stress go away?

Bring on the UNICORNS!!!

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And since unicorns are clearly real, check out this recipe for Unicorn Poop cookies! Thanks to Reader Michelle for this important snack!

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What about you? Have you seen any unicorns lately?

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Day Without My Voice

Drawing inspiration from both Aidan, my non-verbal 12 year old, and Mary, another mom of a daughter who is non-verbal, I decided to spend one day without my voice. I learned so much a few years ago when I spent the afternoon in Aidan’s power chair.

Unlike Mary, I didn’t have much of a plan nor was I really familiar with a particular speech app on Aidan’s ipad. The one we originally purchased for him was not particularly appropriate for him. It was too difficult to find words and not easy to program. I have so much more to say about his ipad use that I will save for another post.

For me and my day without speaking, I mostly used gestures, the notebook on the iPad, and the few buttons on Aidan’s speech app to say thank-you and good-bye.

My day started with me speaking into Aidan’s ear what I would be doing that day. Ironic, I know, but it’s only fair. We were alone getting ready for the bus and it’s usually very quiet between us in the morning anyway. Construction project not withstanding, I cannot remember a time when my doorbell rang at 7:30 am. This morning it did. I didn’t expect my hardest challenge to come at the beginning of the day, before coffee. I quickly typed a message on the iPad, “I’m not using my voice today because my son hasn’t been able to speak for 12 years. It’s isolating and frustrating and I appreciate your patience.”

I answered the door and basically smiled and shoved the ipad in this guy’s face. He was delivering pellets for our pellet stove. He needed to know where to put them. I opened up the garage and pointed. He said the pallet wouldn’t fit in the door. I found myself trying to whisper, which might mean I have a huge propensity for cheating or that I’m not very resourceful or just hugely impatient myself. I took a moment to type that he could leave them outside the garage door and I would deal with it later. He was patient with that interaction but walked away to get the pellets before I could find my thank-you and good-bye button.

First lesson… using AAC (Augmentative and Alternative Communication) takes time. Have you noticed that most people are in a rush?

I went to the gym and then off to Starbucks to write. Lesson 1.A if you didn’t already know….at Starbucks you pay for the love. Right? The coffee shouldn’t really cost 18 bazillion dollars but the Baristas rock. So I may be somewhat of a regular there. The Barista recognized me and said hello. I smiled and showed her my pre-typed order. Pumpkin Spice latte because it’s October, duh. She asked if I had a sore throat. I shook my head and went to find my first pre-typed note about why I was doing this. She waited. She didn’t rush off to do anything else. She just stood there. Then I got my order and she waited again while I scrambled to find the thank-you button. Worth every penny I’ve ever spent there.

Second lesson… building relationships and being known make a huge difference in how we communicate with people.

Then I went home to my broken husband. He threw his back out and was home watching movies. Now my husband and I have a great relationship, but we’ve changed a lot over the years and he does still drive me bonkers, especially when it comes to communicating. In the beginning of our relationship I had to ask a million questions just to get some very basic information out of him. He hated sharing because he felt like he was being interrogated. It was a no-win situation. Over the years, I’ve learned that if I take some deep breaths and just wait, he will share. So, me being non-verbal? My husband spoke and shared all by himself!!! It was pretty awesome. I guess there’s something to say about leaving room for other people.

Then I went to pick up Liam from school. I couldn’t use the ipad because I was driving so I tried to sign to him. I took ASL in college and still have a few words to work with. However, it’s absurd to use ASL with someone who isn’t familiar with it. It was like a big game of charades and Liam and I basically laughed the entire way home. Even a challenge like this one could use a shot of good humor.

Third lesson….it’s helpful to be aware of the different ways we actually communicate. 

Last task for the day was to go to chorus practice. Yes, chorus practice without singing. So I pulled out my iPad with my prepared statement to share with my friend and my iPad went on the fritz. You’ve got to be kidding me. I panicked…. because that is generally helpful. Then I started hitting my ipad because I was sure that was a thing. Turns out if your ipad goes green and you hit it hard in all 4 corners it will right itself. True story.

Fourth lesson…sometimes technology sucks and when it’s your only way to communicate you’re screwed.

As it would happen, the friend that I sit with at chorus is a speech therapist so she took plenty of time to talk with me. She told the friends around me what I was doing so I wouldn’t feel awkward and she included me in conversation. (See lesson one and lesson two). My friend did make a very good point; she asked if I was tired. I wasn’t because remember I had mostly been writing and watching movies with Garreth all day. But I do get how frustrating it can be to use AAC and I’m sure it’s draining to try to be part of conversations that are moving along without you.

Fifth lesson….yes, communication is about so much more than words, but sometimes words are everything. 

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I’m well aware that my day without using my voice in no way mimics a day of being Aidan. He has serious motor planning issues that prevent him from having the kind of success I want for him on the ipad and cognitive processing delays that just make everything harder. That being said, it was still a valuable learning experience for me and I highly encourage you to check out what Mary learned over an entire week of being voiceless.

Food For Thought

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October 14, 2013 Edition

I realize I’m very late to the Medical Marijuana party but I finally watched the CNN documentary “Weed.” It’s very informative and easy to see that parents of kids with Epilepsy, and other diseases, want help.

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Here is an ABC News article about a man with a rare tumor that caused seizures. His seizures have been treated with a new minimally invasive laser surgery. It’s another good read about the suffering that seizures bring and the lengths people go to treat them.

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And here is an incredibly convicting article from Speak for Yourself. The developers of this app have thrown out this bit of wisdom for the techie age, “We are becoming more and more convinced that informed, parent-driven AAC implementation is more effective than under-informed SLP-driven AAC implementation.”

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What about you? What have you been reading?