What Waiting Looks Like

Garreth got kicked and pinned in the ribs yesterday. I got smacked in the face, a fairly regular occurance. Liam took it in the leg and Aidan’s finger was bitten until it bled.

Family snuggle time in this house has its recreational hazards when seizures are involved.

Aidan’s seizures are changing again. He drops his head now frequently when he drives, taking away his greatest skill. He tremors and stares quite a bit making meal time another long arduous task.

And after his tough tonic seizures like the one that happened at snuggle time, his face turns red, his breathing is jagged and then he cries as he comes to.

And now we’re playing the waiting game.

Aidan finally received his certification to legally use cannabis to treat his seizures. We’re very excited and hopeful and ready and maybe a little desperate.

But now we have to wait.

Wait for the right plant to grow.

Wait to soak it in vodka, the good stuff, to actually turn it into medicine.

Wait to have that tested and properly dosed.

But mostly we have to wait for Aidan’s spine surgery to be done.  We’d be breaking federal law by crossing state lines with his medicine. I’m not actually claiming any sort of moral high ground in the waiting because it’s a pretty dastardly deed to just stand by and watch my son make himself bleed.

This waiting feels like wasted time, where my kisses are powerless and my words, I’m promise I’m fighting this with you, meaningless.

But we will wait, together, and hope and snuggle more, because that’s what we do.

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No Stoners Here

I’m the mother of a 14 year old neuro-typical teenage boy – Liam. In the frightfully near future he will probably be offered pot at school.

I have told Liam in no uncertain terms that I don’t want him smoking pot. Though he’s a responsible, rule-following first born child, his brain is not fully developed. Teenagers don’t always make the best long term decisions. I don’t want Liam to be pegged as one of those kids at school; I don’t want him to get busted by the cops; and I most certainly don’t want him to hurt himself.

The fact that weed is being laced with God only knows what and sold to school kids puts them at risk. Generally speaking, the THC level (psychoactive component) of pot now is higher that what our parents smoked at Woodstock. Teenagers can’t be expected to make smart decision when they’re high. So we keep the lines of communication open with Liam; we try to educate him about those dangerous aspects of weed; and we give him words to get out of uncomfortable situations.

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See how good he is already at saying, “No!”

I’m the mother of a 12 year old boy with a developmental disability and seizure disorder – Aidan. In the near future I hope to be able to offer him pot at home.

Strange, right?

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Aidan hooked up to his EEG to measure those bad boys.

Re-read the beginning of this post and replace pot with anxiety/depression/ADHD meds. Yes, of course there are differences. But what is good and healing and necessary for one person may be harmful for another. This fact is clearly lost in the school hallways where kids are trading Ritalin for Percocet or whatever prescription drugs can be found because if a doctor says it’s safe for me then it could probably help you too. That’s a dangerous lie.

Somehow we are able to contextualize these conversations for other substances but not marijuana.

I’ve probably held a beer in my hand while telling Liam that under no circumstances should he be drinking alcohol before he’s 21. That’s not hypocritical; it’s contextual. I point out to him that I’m a legal age, that I’m in safe circumstances with people I trust, and that my fully developed brain will help me set a limit on my drinking. (Just to be clear, I don’t have a substance abuse problem and I’m basically talking about having a beer with nachos). The context of Liam’s potential drinking would likely include driving, being surrounded by people who don’t have his best interests in mind, and getting drunk.

Totally different.

I’m excited that people are talking about the benefits of medical marijuana for kids with Epilepsy. I’m in the process of trying to obtain it legally in hopes that it would stop Aidan’s seizures, while at the same time warning Liam against using whatever substances he’s offered at school.

I’ve met other seizure moms who are looking into the use of medical marijuana for their children. None us of take this decision lightly. We’ve all done our research. For me, I’ve researched medical marijuana more than I researched any other medicine my doctor prescribed, though the side effects of the other meds are scary. Most of our children have already tried and failed the use of many pharmaceuticals, while some have even had radical brain surgery to try to reduce seizures. We are motivated and committed to finding safer, more effective treatment for our children, and if that’s medical marijuana then so be it.

I was contacted a few weeks ago by a reporter who needed people who were willing to go on record as seeking or using medical marijuana for their kids. Unfortunately, there is still a stigma against using it and some understandably fear the repercussions against going public. Though I have no idea if marijuana will ultimately help Aidan, it’s helping other kids and I want to be part of this dialogue. So I shared my story in hopes of raising awareness of the healing potential of pot.

To the mothers of kids who are experimenting with drugs and seem to be risking their health and throwing away their academic or athletic prospects – I hear you. To the mothers of kids with mental illnesses or substance abuse problems – I hear you. Those are very real and scary challenges. I want you to be able to help your child in the best way possible, just like I want to help mine.

I understand this conversation may make people nervous, angry, or afraid. All I ask is this; please listen to our stories and tell us your concerns before judging us. If I can have these awkward, nuanced conversations with my children, I can have them with you. This is an invitation for you to ask questions.

We’re going through another med change for Aidan, which always makes me extra watchful. Just this morning Aidan twitched and jiggled and cried the entire time while getting ready for school. This is all part of his seizure activity. As a result, he didn’t eat much because he couldn’t control his body.

How can I do anything less than everything to try to help both of my children?

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It’s true – they love each other so much.

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Check out our story on the FRONT PAGE (thank-you Mary Pols) of the Maine Sunday Telegram

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To read more about how medical marijuana is legal in our state but Aidan wouldn’t smoke it etc. read my post complete with links

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To read how legalizing recreational marijuana in Colorado is another complex conversation, read this article from Slate.

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?