The Risk of Believing

We sit in the front row at church. I’m too easily distracted to sit anywhere else. When Aidan was learning to walk, it provided him with a purposeful opportunity to work out. Walking to your seat is not a made up phycial therapy excercise, but rather a functional activity. He loves walking so much that he generally walks past our seats and onward toward the stage or out the side doors. That kid wants to move.

These are the moments I actually love having typical kid problems. When everyone else sits, Aidan needs to sit, whether he wants to or not.

Turns out Aidan likes to talk too. Aidan had quick success when we bought him the Speak for Yourself app for his ipad, what we now refer to as his talker. We started with just a few simple words. Because the words never move, Aidan learned where they were located and his point improved with his determination. We gave him more words. He started to speak in sentences. He proved he had manners when he used the word PLEASE.

And now he talks in church. Typical kid problems.

Last Sunday Aidan reached for his talker for the first time unprompted. Usually we use it at meal times or present it to him when we want a response. While it’s always available to him, Aidan only seems interested in specific contexts. I had already turned the volume down when he grabbed his talker in church, but Garreth held Aidan’s hands back. I glared at Garreth with the let go of my kid before I chop your hands off in the name of Jesus face. We’ve waited a long time for Aidan to speak and I won’t let a moment of embarrassment stop him. So just as the sermon ended there was a quiet robotic request for MORE MORE DRIVE DRIVE DRIVE.

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It’s all a bit of a risk, though, this finding a voice for your child. I passed up the Speak for Yourself sale twice because I didn’t believe Aidan could use it with his fine motor challenges and his comprehension skills. Could he really understand that there’s a word behind a word? When I finally bought the app I still wasn’t sure. I risked being right that this wasn’t appropriate. I risked being wrong that maybe there was hope anyway. I risked wasting time on the wrong app. I risked feeling lost or overwhelmed, unsure of how to teach him where the words are and how to use them.

I risked him learning quickly and then hitting a plateau. He’s done that. Aidan spoke in sentences a few times and then went back to one word utterances. I’m ok with that because I know it’s part of his learning pattern. But it’s still a risk to be excited and then discouraged. It’s a risk to trump the professionals, to be the parent who says, this is what I choose and I’ll tell you why. Aidan’s team has been completely supportive but it certainly doesn’t turn out that way for everyone.

And let’s face it, it’s a risk of wasting your money. This app benefits people who are generally spending money on a variety of medical and educational expenses. While $200 may not be exorbitant on its own, put it in context of the specialized food and alternative medicines and wipes and excessive mileage to doctor’s appointments and previously trialed AAC devices. It adds up.

The door just cracked open a little more into Aidan’s world. He’s smart and polite and hungry and yes, even a little disruptive in church.

This Thursday on April 2 the Speak for Yourself App is half priced in honor of Autism Awareness Month.

 It’s the reason my son has a voice and I’ve risked a lot more for a lot less.

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Check out the Speak for Yourself website which has excellent tutorials and the Uncommon Sense blog has an comprehensive review. And just FYI, I don’t work for SfY and get nothing for this reccomendation but you can be sure that I’ll continue to shout from the mountaintops that my boy has a voice.

I’m happy to answer any questions you have if you’re considering AAC.

Potty Talk

While there may be a lot of potty humor in this house of boys, there’s not a lot of potty talk. We’re a silly and ridiculous family and all challenging topics are game for honest conversation, but mostly we keep it clean.

Mostly.

Now Liam, my first born, is a rule follower, of course. He never swears and he’s very quick to call me on it when my words get colorful. It’s absurd, when you think about it, me hoping I don’t get in trouble with my kid. So instead of being chastised by my teenager, I decided to change the rules.

Swearing is allowed for any and all of us in three instances – talking to a billing agency, dealing with insurance, and managing seizures. Now I can just hang up the phone and yell in freedom. Do your @*#(*@#&* job!!! Just pay the *#@(&@# bill!!

Liam has been known to quickly report to Garreth upon his return from work that, “Mommy had a sweary day.” They know I got s&#t done and it wasn’t easy.

And seizures. I’ll never have anything nice to say about them. Yes, sometimes we just ignore them and sometimes we attend to them with tenderness, sometimes we wait them out and move one. And sometimes we, now that the rule makes it acceptable, swear at them or about them or to them. “That was bull#h%t, Aidan. Those are mo-fos.” These are the moments to tell it like it is and these seizures are a theif and destroyer.

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I certainly don’t feel crazy all the time, as this photo may suggest. But today is the day my FaceBook feed will fill with people wearing purple, standing with us, sharing their own stories. We shine a light on Epilepsy to say it needs to be cured, gone from my life, or at the very least, treatable.

Oh right, Aidan’s Epilepsy has proven to be untreatable thus far. That’s the kicker. Yes, he’s started medical cannabis, but we don’t get that quick easy miracle story like others. We never do. So I take deep breathes, remind myself we’re certainly not at the end of the line yet, and garner my patience.

Today is Purple Day and this is why it matters to me:

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Seeing In

I’ve writtten and deleted this post a bazillion times in my head. I wanted to pull out all the stops and let you in, really let you in, to show you why Purple Day and this entire conversation is so important to me.

Yes, there are facts and figures about Epilepsy. There are stories too.

But I wanted you to see, really see, what seizures look like. I wanted you to see that they’re strange, and scary, and dangerous, but sometimes easy to miss. If you only know about seizures from TV and movies, like I did, you’ve only see tonic clonic (grand mal) seizures. It would be perfectly reasonable to assume that’s the only kind there is.

Unfortunately, that’s not true. There are many different kinds of seizures and different types of  Epilepsy Syndromes. Aidan has Lennox-Gastaux Syndrome and experiences myoclonic, tonic, and absence seizures.

I recently posted a video of Aidan using his talker and referenced the small seizure on there. Several seizure moms asked me to point it out. Granted, only a slight tremor in his hand was visible. But this, and other conversations I’ve had recently, have propelled me to consider posting video of Aidan’s seizures.

It was a video that led me to a neurologist, this video, in which Danielle, the mom, says, “I don’t think it’s a seizure.” Not only did that sweet boy go on to literally have half of his brain removed to treat his Epilepsy, but he’s also an exceptional boy who loves his siblings and speaks and walks and plays at the beach and does all kinds of little boy things. That video alerted me and changed my parenting course and I’m incredibly grateful.

That’s why I wanted to post video of Aidan, in case anyone else needed to see, needed a push to the neurologists office.

But I couldn’t do it. I can’t do it. I suppose I could say it’s to protect Aidan’s privacy and a bit of his dignity, but in truth, that’s not it. There’s something about Aidan not being there during his seizures. It’s not him. It’s also disturbing, perhaps not to you, but to me. I suppose it shouldn’t be because I see them all the live long day, but it is. I work hard on this blog for you to know Aidan, to be comfortable with him in your world, to see the good and the bad in our life. But his seizures are something else entirely.

While I won’t put video out into all of cyberspace, I will make this offer. If there are any parents out there who just aren’t sure, who really want to know what I’m talking about, email me. I do feel comfortable sending video to those who need it. If there are any medical professionals who want to be prepared and have only been schooled in tonic clonics, I’d also be happy to share video with you. It’s what I feel capable of in helping others.

There’s no clean way to wrap up this post because there’s no way to make seizures cut and dried. So I’ll leave you with my little bruiser. I know the black eye is a bummer, curtesy of a seizure, but that face….

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Will you join me in wearing purple tomorrow and stand with the 65 million people around the world who have Epilepsy?