10

K's birthday came and went. She was excited for double digits, although sad she would no longer be nine. Each year she cries a little, missing the age she was before. The epitome of not liking change. At least 10 is special. She had a fabulous (and I mean, fabulous) birthday party, complete with a man who brought all her favorite animals, a My Little Pony cake, and a sleepover with a couple friends. Her first real sleepover. Something she's seen on TV, and something she desperately wanted. Make-up. Nail polish. Snacks. Hanging out in our playroom, sans annoying parents. I am pretty sure there was a My Little Pony episode she used to plan the event (not kidding.)

K thought the day was perfect. The sleepover, perfect. I chose girls who are nice to K, and ones I knew wouldn't cause tween drama. Sure, there were times K was off doing her own thing, but there were also times she was totally engaged with her friends, as they slathered on pounds of make-up, or watched TV. The next morning she happily sat and did Shrinky Dinks with one of them. K declared it her best birthday, ever, and it was. She was happy, like really happy, which is something I don't often see.

Of course, I had a more difficult time with her turning double digits. Eight years until 18, kept going through my head. Where are we? Where are we going? How will we get there?

She's still young, people tell me. She is, but these past 10 years have flown by, and we are still gasping for air at times.

She's doing so well, people tell me. Except, they don't see when she's not doing well, and I am not one to overshare.

We have 8 short years until she's 18. We have puberty. We have the hardest years of a kid's life ahead of us, and it scares me. I know I'm supposed to be positive all the time, but the older K gets, the easier it is to let doubt take hold. There are so many things K wants out of life, things she wants, but the way she is wired makes her path so hard. It just does. I know there are some who don't want to hear that, but it's the truth.

We recently had some new testing done, and it makes me sad. Let's just say, being treated a certain way, and basically traumatized by certain people (you can guess where this all happened), have killed any ability she has to cope. She has so much potential, but reaching it? Not easy. Finding good school placements? Not easy. Having faith it will all be OK? Not easy.

I know these tests don't define K. I know they aren't always accurate. What the psychologist saw was a true representation of K, though, beyond academic skills, which can wax and wane. Beyond any box she checked off, or circle she filled in. She saw K as a person, as we see her, and that part is the most important. It's what gives us the most accurate information.

Her doctor said K was one of the hardest kids she's tested. Heck, they didn't even finish all the tests. So, she's a kid you might look at and say is high functioning, but she doesn't function highly at all.

I shouldn't be sad, but I am. I can't help it. I'm a mom, it's what we do. I desperately want K to be accepted and loved and given a chance. I will always fight for that. Unfortunately, we don't live in a perfect world ready to love and accept and give kids like K a chance. We don't live in a world where it's easy to be different.

I do need to live in a world where my my kid is happy and fulfilled, though, and even that, right
now, is hard to imagine.

I wish everyday could be like her birthday. Where she was excited and happy and unconditionally loved by everyone around her. I wish I looked at 10 the same, innocent way, she does. The one thing that gets me through is reading blogs by those who are young and autistic (Autism Speaks debate, aside.) Yes, we only have 8 years, but we also have 8 whole years. There's hope, and I just need to focus on that.

10 is magical to my girl. I hope I can see the magic, too. For now, I'll just sit here and relive that perfect day.

 

 

What We Need to See

There was a blog post that made the rounds yesterday. I saw it several times on Facebook, but I didn't read it until this morning. The first few lines of the post showed up whenever the blog was shared, and I almost shrugged it off because I saw the word "apraxic". In my ignorance, I decided the post wouldn't apply to our lives, since apraxia is not a diagnosis either child carries. (Apraxia is a separate disorder from autism, and is what makes a person "non-verbal". You don't need to be autistic to be apraxic, and you don't need to be apraxic to be autistic.)

You can go read the post HERE.

As I began to read, it hit me. Hard. This blog post was so much of K's life. No, K isn't non-verbal, but she also isn't able to fully tell people when she needs something. Really needs something. Things like a break, quiet, or people to just stop throwing words at her when she isn't able to process it all.

It reminded me of a dance class last fall. K was struggling. Just having a really hard time. Because K is a verbal kid, and because there are a lot of things she can do, even I sometimes expect too much. In the middle of class, K stopped wanting to participate, started to cry, and tried to leave the studio. At the same time, her classmates were cheering her on, chanting her name, and trying to get her to join with them.

I stood there feeling aggravated. Why wouldn't she just go to them? They were cheering for her! They wanted her to join their circle! This was all positive, right? So why was she standing there, on the verge of a meltdown?

I just didn't get it. I was looking at it through my own eyes. My own, non-autistic eyes. A group of people cheering someone on? How could that be a bad thing?! I was angry. I just couldn't understand. I allowed my own feelings of embarrassment get the best of me.

It wasn't about me, it was about K. How she was feeling. How everything sounded and felt to her. How she needed someone to just get, in that moment, that she wasn't being a bad kid.

She was already overwhelmed, standing inside an echoey dance studio, bombarded by words. The loud demands of others. To K, their voices must have equaled a thunderous roar. One that upped her anxiety, and made the tears come faster.

Maybe their cheers made her feel worse about needing a break. Maybe she felt embarrassed that all eyes were on her, when she just needed some time alone. Maybe the whole situation, as positive as it looked from the outside, made her feel even more different, in a place where her differences shouldn't have mattered.

What she needed was to be told it was OK to get away for a while. For me to take her somewhere quiet, and not make it seem like a bad thing.

I didn't look at the situation through K's eyes. I didn't respect my own child. Yes, she's verbal, but in those moments, words fail. I didn't realize until reading that blog post just how much I had failed that day, as well.

I thought I couldn't learn from someone whose experience seemed so different than ours, but I was wrong. Our kids are more alike than we know, and trying so hard to separate "levels" of autism means we are probably missing out on a whole lot of information our kids need us to hear.

Lesson learned.

The Perfect School

Today K and I made a list of things she'd want (or not want) in her perfect school. Though we love the school she is in now, it isn't long term (which we always knew.) She needs to be challenged more academically, and definitely needs more social opportunities (right now she is 1 or 2 students in her class.) This school has done a lot for her, mental-health-wise, and for that we are eternally grateful, but at some point we'll have to find a new placement.

So, today, while we were getting in some afternoon snuggles, we decided to make this list. Actually, I asked her if she wanted to make a list of wants and don't wants, and she agreed. We make so many decisions for our kids, I wanted to make sure K is represented in whatever we choose to do down the road. Some of her answers I prompted, knowing what she loves about her current school/misses about her old school. Some of her answers she gave without any prompting at all. I think the most important answer was no restraints. This was 100% her, no prompting needed.

So, here is K's list. Short, sweet, and oh-so important:

Wants:

A class pet
Girls
Nice teachers
Art
Good food
Culinary arts
iPads
closer to home

Don't wants:

Restraints(!!!)
Homework (she hasn't had that in her previous two placements, anyway.)
Bullies


One of the things K loves most about her current placement is the culinary arts program, so I am really hoping we're able to find another school that offers that. She loves using the iPad for all her schoolwork, too. The fact that physically writing is such a challenge for her, and can get in the way of her overall performance, an iPad, or laptop, is definitely something we need to make happen.

The class pet? This might trump everything else on the list, but is probably the hardest thing to find. Especially as she gets older. We toured a few different schools, and class parts are few and far between. I'm sure K could convince a teacher it's something absolutely necessary, though ;)

And girls. Well, we are realistic about this one. If we could find a school with even one other girl K's age, we'd consider it a win!

Nice teachers, good food (in the cafeteria), and art class are all things that will hopefully be easier to find. As far as distance from home? Well, we live in the boonies, so nothing is going to be close. One can always hope, though!

As soon as we started making the list, K said something she wanted was "no restraints". Actually, what she said was she didn't want "that thing at the other school", and I immediately knew to what she was referring. It's sad that has to be on the list at all. That in this day and age educators can't come up with a better way, or have enough respect for our kids that restraints and seclusion aren't even on the table.

But, alas...

A school's policy on restraints/seclusion is something that will be immensely important moving forward, though.

As for homework? Most of the programs don't have homework, but that isn't a given. Being that we needed a tutor specifically for homework when K was mainstreamed, I wouldn't mind no homework either. It caused a lot of unneeded anxiety and behaviors in our house, and I personally don't think homework is necessary, for any kid. Reading at home should be the only homework a kid gets.

K considers anyone she doesn't get along with a "bully", so this is a hard one ;)

I am hoping that K's next placement is the school she will be in for the long haul. It would be amazing if we could find a program that could get her through high school, even, though I know that's a tall order. I just don't want her changing programs every couple years. Hopefully we can take some of her wants (and don't wants!) and find a program that will work for her. There is no perfect school, but I want to make sure that K has a voice in whatever we choose.

Don't Die. Or, It's Time to Take Care of Ourselves.

After the whole, I think I'm dying, incident, it really hit home how important it is that I, you know, make doctors appointments for myself, and get my stress level under control. First stop was the GI doctor. I mostly made the appointment because, since I don't chew my food like an adult, I swallowed a piece of crusty bread that basically cut it's way down my esophagus, into my stomach. After a week of pain, I decided that I should consult with an actual physician, since images of said crusty bread turning into a giant, festering, wound, danced in my head.

Turns out, I wasn't so far off.

After speaking to the doctor, she recommended I get an endoscopy. I have a history of reflux, and other fabulous stomach issues, especially since having kid #2. I'm not a fan of anything medical, especially when I have to be sedated/put under, but I put on my big girl panties and kept the appointment. I am OK with making appointments, it's the keeping them part at which I do not excel.

So, long story short (sidebar: waking up during an endoscopy is horrible and painful and next time I will make sure they know to drug me up good), it was discovered that I have "multiple stomach ulcers".

I guess all those jokes I made last year, about our fight with the school slowly killing me, were not all wrong. That and other things have left me with, I believe, 3 beautiful ulcers. Three. Not one. Not two.

Three. 

I was instructed to basically never take ibuprofen again, and up my Prilosec to twice a day. I actually didn't remember about the Prilosec until yesterday, because they give you this information while you are still mostly drugged up, not thinking it important to maybe send you home with any written instructions.

I have a follow up with GI, but not until the end of February. It was an appointment I made before the endoscopy, but I am sure if they want me in sooner, they will let me know. There's really not much to be done for ulcers, besides avoiding certain meds, and probably easing up on the Franks Red Hot. I just have to take my Prilosec and hope things heal.

Of course, now I am basically afraid of all food. Every since the bread incident, I've had pain every time I eat (and sometimes when I'm not eating), and now that I know there is actually something wrong, well, all food seems like the enemy. I am guessing maybe the bread attack angered the ulcers, as I never had pain before that, or else it's all just a big coincidence. Who knows. The whole situation just stinks, basically.

Oh, did I mention that on the way to my endoscopy, probably two whole minutes (or less) from the hospital, we were rear-ended? Yep. As though my nerves weren't already shot, some college kid decided braking wasn't a mandatory thing, and slammed into us as we were stopped so the person in front of us could turn. SO, the same bumper we just had replaced last August because of a similar accident, now has to be fixed again.

Anyhow, moral of the story? Take care of yourself. Making sure you are healthy needs to be a priority. I'm not telling you to take a vacation, or go get a pedicure, because, I get it, there's not always time (or money) for those types of luxuries. I'm telling you make sure you are around for your kids for as long as possible. That's what's important.

So, join me on the year of actually going to the doctor. Don't let your one stomach ulcer become three.

Sad Face

July 31st and Aug 19th are two dates that are burned into my memory forever. They are the the dates of B's first seizure, and of his last. Well, his last so far, as much as I hate to qualify it like that. The last one before he was admitted and given giant doses of Depakote, after experiencing 3 Grand Mal seizures over the course of 5 hours. 

July 31st is also the last morning he woke up in his own room. Excessive Googling, and finding out there is something called SUDEP, which is basically SIDS for people with Epilepsy, brought him into our bed, and won't allow him to leave. 

I won't allow him to leave. 

Last night, as my husband, B, and I were vying for room in our bed (alongside our 65 lb dog), B started crying and told us he just wanted to sleep in his own room. He said it a few times, frustrated and teary-eyed, and only one word escaped my mouth. 

No. 

When my kids sleep in our bed, I wake up at the slightest movement. It's a good thing when you want to know if your kid starts seizing beside you, and a bad thing if you ever want to feel well rested. I just can't bring myself to let B sleep in his own room again, alone, because what if...

What if? 

There are (expensive) seizure monitors on the market, and I honestly thought we'd have one by now. Mostly because my husband isn't a fan of sharing bed space with a child who rarely stops moving all night. But, it's a lot of money, and easier to just keep B in our bed. Even with a monitor, I don't trust anything as much as I trust myself. I wouldn't feel comfortable without B beside me at night. I like having him close, within my reach.  

But, he's 7, and the novelty of sleeping in our bed has worn off for him. It's been a long time since he's spent a night in his own room, and he's always been a kid who preferred his own bed over sharing one with us. Even as an infant, when I wanted to co-sleep, he preferred his crib. We actually moved his crib into our room so he would still be with us, even though he didn't share our bed (yes, we were those crazy AP parents.) 

But moving his bed into our room now just isn't an option, and, yes, would be over the top. I just don't know how to let go, or ever feel comfortable letting him sleep alone. Even if we did have a $600 seizure monitor hooked up to his bed, it's not the same as having him with me. I know he can't sleep with us forever, but, well, I want him to sleep with us forever. 

I am not sure what to do. I hate that B is so upset over having to stay in our room. I know how much he loves his own bedroom, and I know he doesn't understand why I'm scared to let him sleep alone (nor do I want to share my reasons, because he doesn't need to worry about such things.) 

I know B hasn't had a visible seizure since August 19th, but that means nothing to a worried mother. Nothing. It also doesn't mean he won't ever have one again, especially if he has a growth spurt, or gets sick, or anything else happens that makes his medication a bit less effective. It also doesn't mean he can't have a random breakthrough event. Epilepsy is a mystery. We have no idea why B started having seizures, and not having a cause just makes it a lot scarier. For me, at least. 

Seeing your child have a Grand Mal seizure is not something I would wish on my worst enemy. Those scenes are with me forever, as is the feeling I had the first time, when I honestly thought B was dying. It's nothing like you see on TV. It's 1000 times worse. It's not comforting when the doctors tell you they can't pinpoint where the seizures are starting, and that they seem to be coming from everywhere. It's not comforting to know your child's medication might soon be changing, because of how it's affecting his organs. I can barely send B to school without a panic attack, so imagine how difficult it is for me to even think about letting him sleep alone. 

I know B deserves a normal life. I know he should be able to sleep in his own bed. I don't want him to be sad, or feel different, and I wish my anxieties didn't get the best of me. It's just a scary thing, letting go. I need to find a way to do it so that we are both happy, or else I'll just end up sleeping in his tiny, Ikea bed with him, and that's not ideal, either.