What I Mean

Yesterday I wrote how we are in a better place than we were this time last year, which is true. However, in an effort to be totally honest, and not make you think that I discovered some secret to the perfect life (ha!), I want to tell you what I really mean.

1)School. We are definitely in a better place when it comes to K and school. This time last year we were about to start her in the district autism program. Little did we know, we had a big fight ahead of us to get her somewhere that was actually therapeutic. K's brand of autism is such that, right now, LRE for her is really a school considered most-restrictive, but it is 100% what she needs. We have successfully taken away one of the biggest causes of K's behavioral/anxiety issues by placing her in this school. It is a wonderful thing, not fighting your child every morning, or having them come home totally burned out, and in an awful mood. Not fielding phone calls each and every day. We are incredibly grateful she has this placement, but, and this is a big but, changing schools does not mean everything is perfect. It just means her educational experience is going well, but there's a whole life outside of school, and with that we still struggle.

2)Labels. K is "high-functioning" so there are some people who believe I cannot relate to real autism. Or that K is so far above their child on the spectrum, our life is peaches and roses. That what we deal with cannot compare to their own struggles. I'm pretty sick of the comparison, honestly. Like really, really sick of it. The outside-of-school part of K's life is not going well. She is struggling like I've never seen. What makes her "high-functioning", I think, is her verbal ability? Not that she is able to ever tell me what is wrong, and she mostly uses her vocabulary to talk about whatever she is perseverating on at the time, but she speaks, so life is easy peasy.

Obviously.

There is something I want to be clear about, and that is that K does not have Aspergers. B has Aspergers, K does not. She has autism. She might have a different brand of autism than your child, but it isn't Aspergers.

I probably shouldn't concern myself so much with labels, and whether or not they are accurate, but it's hard when people make assumptions, and have a totally wrong picture of your kid. Right now I am just trying to figure out how to best help my child, and we are up against some hard decisions.

3)"Changing how I look at autism has taken away all our problems". That statement is not at all true. Changing myself has helped because I am no longer fighting my kids. I am no longer trying to make them as "typical" as possible. I've realized how they are is how they are, and my job in life is to make sure people understand they are worthy as is. That "passing" is not my goal, because pushing for that can do more harm than good. However, even though I've changed doesn't mean the world around me has changed. Passing will always be the goal for most people when it comes to autism. Every expert will have you therapy your kid to death in order to get them as close to normal as possible. The quest for a normal kid goes hand-in-hand with an autism diagnosis, so it will always be a constant battle to make sure my children don't fall victim to those who cannot, will not, accept them as they are.

However, my kids both still face a lot of struggles. I don't believe autism is a gift, but I also don't think it's a curse. It just is. It's my children's neurology, and how they were born. There are good times, bad times, and in between times, just like in everyone else's life. Acceptance to me is not forcing them to be people they aren't. I'm sure I let them get away with things some people view as terrible, because I am giving in to their "autism", but, really, I'm just letting them be themselves.

Allowing them to just be doesn't take away the anxiety, though. The behaviors. The depression. The struggle to make friends, or the need to be flexible in their very rigid worlds. It just means I am trying hard to help them navigate the world as autistic beings, instead of pushing them to fit in as non-autistic. I don't believe making life more difficult is the answer.

I have found a lot of peace since I've stopped forcing my kids into the car for different therapies they clearly hated, and that weren't adding anything positive to their lives (and, hey, maybe your therapy schedule is working for you, and your kids are 100% happy. That is fantastic! That just wasn't our life, and don't be like me and hang on for too long once things stop working.) Finding peace, and having a peaceful life, are two different things.

Why am I writing all this? Because I don't think I was being honest enough. I think what I wrote yesterday could make some people believe I found some Holy Grail, and that our life had suddenly become easy. I don't want to make people think if they follow my lead, life will be perfect, and the struggles will end. K is almost 10 (in 2 weeks!), so what I share has to be limited. She deserves, and wants, privacy. I know that not sharing everything leaves readers to "choose their own adventure", but I needed you to know that while we are in a way better place than we were a year ago, we still have a long road ahead. So don't think I can't relate if you are going through a really rough time. I can probably relate more than you know.

If you've stuck with me this long, I thank you. I know I have a tendency to ramble. This life is a complicated one. I'm just trying my hardest to make sure my kids know they are loved and truly accepted for who they are, whether we're close to falling down that rabbit hole, or having the best day ever.

Bucking the mainstream doesn't mean everything has gotten easier, it just means I've stopped making things harder.

So, that's our truth, lest you think I've wandered off into some shiny, happy, fairytale land, and can't understand the struggles others face.

I get it. Trust me, I do.

Too Bad, So Sad?

Fair doesn't mean everyone gets the same thing, it means everyone gets what they need.
(photo credit) 

Another Disney post made it's way around social media yesterday. I read it, but didn't pass it around, myself. I figured I'd beaten that horse to death, and I don't seek to be purposely annoying. People know my stance, and since all my (one-way) communications with Disney fell on deaf ears (hey, I'm not a super blogger that's going to tow the Disney line just because), I basically let it go...for now.

So, yeah, dead horse, except...something I read made me really angry. A comment made by another parent, who basically said if your kid can't access Disney like everyone else, then they just shouldn't go. I'm paraphrasing, here. There were really long comments, listing all the reasons why kids like mine shouldn't be allowed(?) to ever go to Disney, and that, sure, they'd miss out on certain experiences in life, but people with neurological or medical issues don't deserve special accommodations, so they just shouldn't go. It's just not fair to everyone else. Oh, and we are being irresponsible parents taking them, knowing it will be hard.

Now, I'm no shrinking violet, and in non-shrinking-violet form I responded. I wasn't especially nice in my comments back, for which I did feel a tad bit guilty, but I suppose when you know you're fighting a losing battle (kindness and compassion just can't be taught), you don't feel the need to play as nice as you would otherwise. I will admit I took the comments personally. Maybe they weren't meant to be taken as harshly as I read them, but the message was the same, whatever the tone.

I am sure a lot of people feel the same way as this commenter. That because my kids face certain challenges when visiting someplace like Disney, going there should be off the table for our family. Never mind that my kids, especially B, want to go, and ask to go, they just have to miss out because they aren't typical.

People being OK with any form of discrimination is bad. Teaching kids that everyone needs to receive the same exact thing, or life isn't fair, also bad. Sometimes there are individuals who need more help than others. Is it their lot to just hide away at home? Miss out on life? Live on the fringes of society, because they don't deserve to be accommodated?

This type of thinking goes against everything we say we want, when we talk about inclusion. It's separating people. Saying there are those who don't deserve happiness alongside their typical peers, because they access things differently. It's taking a group of people and seeing them as less. As not worthy. Only everything I'm trying to fight.

My kids work hard to fit into the world around them. Especially K. I mean, that girl works her tail off just to make it through the day, and I don't think it's wrong to expect others to work just a fraction of the amount to accommodate her, at times. I don't think I should feel guilty about wanting those accommodations. I don't think expecting human beings to show a little compassion for others is beyond reason.

So, to those who say I should just keep my kids home (unless I want to give this blog an over 18 rating, I can't say how I really feel), just know, we refuse to hide. I refuse to limit my children's lives. I refuse to give in to those who are mean-spirited, and who were actually born without an empathy gene.

All of this goes far beyond Disney, and it doesn't just have to do with autism. Every person on this earth deserves to be treated with respect, and dignity. Telling them to just stay home, well you might as well tell them to just not exist. None of us should stand for that.

My Truth

I've been working really hard lately to focus on the silver linings. Always looking ahead. Letting go of grudges.

But, sometimes, it's hard.

Here on the blog (well, blogs, since this isn't my first rodeo. See thee "about" page), I've always been really open with our lives. I've always been honest that I have two, "high-functioning" kids, and honest about how that means nothing in the midst of a rage-fueled meltdown, the lack of friends, or the myriad of other things that come along with autism.

But, our autism, heck, the two different "autisms" we deal with in this house, are just that. Our "autisms". I don't know what profoundly affected folk go through. I don't know what it's like to see autism as only a gift. I've made that clear many, many times. I speak for us, hope some people get something from my writing, but know we all walk different paths.

I also try really hared to remember other people have their own stories. Everything is relative. What's awesome or horrible to you, could be the total opposite to someone else.

But, sometimes, I feel bitter. Probably a bit jealous. I read blogs/status updates/Twitter feeds where someones worst day would be a welcome change here. I think to myself, if that is the hardest thing this person/family goes through, they should consider themselves lucky.

The thing is, I don't know the inner workings of people's lives. A lot of the time, what is shared is only part of the picture. Some people don't want to reveal the really bad days, because that might make people uncomfortable, or they deem it too private. On the flip side, there are those who don't want to share the really good days, because that might make them look like they don't belong in the "club".

Some people just want to appeal to the masses, so they mold their stories so that as many people as possible can relate. When it comes down to it, how often do we meet the person on the other side of the computer in real life? We are in complete control of how people view us, and our children, when they log on. Some might manipulate what they write to draw you in, because page likes, or followers, are the end game.

For me, well, I want to be me so much, I've gotten into heaps of trouble staying true to myself, and our story (remember that "about" page?).

So here I am...a middle-class, stay-at-home mom. We aren't rich, we aren't poor, but we are lucky to have the means (most of the time) to fight for our kids. We live in a big house, bought before any diagnosis, and before most of our disposable income went towards all things "autism". Our house is large, yet in dire need of updating, new carpets, and a good power wash. All our belongings are still a mish-mash of what my husband and I brought to our relationship, which sometimes makes me feel less like adult, and more like I'm living in a dorm. My marriage isn't perfect, I can't cook to save my life, and I am proud the one day of the week my house is actually clean. Sometimes I yell at my kids, and sometimes I can be a crappy friend/wife/insert anything else here. I'm a nervous nellie, and loathe confrontation to a fault.

But, I love my family, would do anything you ask of me, and try really hard to be worthy of the oxygen I breathe.

I am constantly pursuing happiness, and trying desperately to shed my "Yankee" negativity (a term from my college days). In my younger years, I went through some hard times, homelessness, helplessness, and the fear of that happening again drives me now. I'm probably not exactly like you, and might be the polar opposite of you, but I appreciate everyone in my life, real, and virtual. Those relationships get me through.

I guess I just wanted, no needed, you to know that I'm just a regular person, trying to connect through my little blog. I'm not trying to make money, write a book, or get free swag. My goal has always been just sharing our lives, our journey, hoping that even just one person feels better knowing someone out there "gets it". I've always wanted connect with my readers on a more personal level (which, yes, has become more difficult this past year, with all the school-blog issues, but let's me honest, most of you probably know who I am). Because of this, I've made great in-real-life friends. Heck, I've made great cyber friends! (READ THIS. That awesome gymnastics Dora...found for me by someone I know only online, and shipped across the country for me. See...that's what I'm talking about). 

So, thanks for reading. It means more to me than you'll ever know.

(P.S. Let me know if I can ever find you a cool gymnastics Dora, too)

I Shall Not Admit Defeat!

It's been a week. Or, really, a week and a half. Forget waiting for the other shoe to drop. I think sometime this week I looked up and 757 shoes came raining down.

But, as K's therapist's would say, that's glass half empty thinking, and that won't do.

It all began when I got into a fender bender the week before last. Apparently a red light doesn't mean the same thing to all people, and the woman behind me figured she'd use my car to stop, as opposed to her brakes. She looked at my broken bumper and told me to just get some glue. She didn't want to hear the person in the car with me had whiplash, and decided the best thing to do was jump into her vehicle and drive away. From an accident. Because, you know, why not?

One 911 call later, I filed a police report, called the husband, and had my poor car towed. Thankfully, I now have it back, so I can ring in 200,000 miles as planned. I mean, I am a little over 198,000. I was not happy thinking I might not get to reach the next milestone. It's the little things.

We are not a one car family, but someone, who shall remain nameless, thought he'd save a few bucks and not add rental car insurance to our policy. Let's just say, it's being added now. I always had this idea in my head that we could ditch a car, and just share one to save money. A lot of people do that. We...are not these people.

So, we're cruising along last week, and then Wednesday happened. Let me start by saying I am very thankful my husband decided to work from home that day. I am not thankful I put off taking a shower...

After getting K off to school, my husband, B, and I slept in. It was the one day that week I had nothing to do. We got up around 9:30 (yes, 9:30...I know some of you are murdering me in your heads), I made B breakfast, and while he ate I checked my email (and, OK, probably Facebook and Twitter) in the other room.

One second I hear B talking to our dog, and the next I hear gurgling. Gurgling that I thought was caused by him making a mess with his chocolate milk.

Don't I wish.

I walked into the kitchen and found him on the floor. Drooling. Convulsing. Not responsive in the least. I called (screamed) for my husband, and dialed 911 (two 911 calls in a week is not my idea of a good time).

My kid was having a seizure.

Seizures are not something we've ever dealt with. Quite frankly, I thought we had dodged that little autism bullet (if it is at all related to autism). It was the scariest morning of my life. I literally thought my kid was dying. It took him a long time to snap out of it. He even lost speech for a while. Thankfully he remembers nothing, thinks it's cool he got to ride in an ambulance, and thought the ER was fun...they had saltines and ginger ale. Party down.

I really don't think paranoia begins to describe how I've felt since. I don't want to leave him along for 2 seconds, and have forced him to sleep with me all this week, thereby forcing my poor husband to the couch (but he has a dog to snuggle, so don't feel too bad for him).

I've tried not to Google grand mal seizure. I've tried convincing myself that B might be one of those kids who randomly has one seizure, then never again. We thankfully got in with a neurologist tomorrow afternoon, and I am anxious to just get on with it...whatever "it" might be. I am sure there will be EEG's and tests...protocols for school and camp...I just want all our ducks in a row. I want to know what to expect. I want to know more than I know now.

And I never want to see my child like that again.

Some other, personal stuff went on this weekend that I'm not at liberty to share, but all in all, I've had a lot on my mind, and am ready to hibernate for the winter. I am thankful for some friends and family who understand that I am currently half-human, and who are giving me the time to live in my own little world. Pretty much all I can muster is being a "mom" right now (so, I guess I'm thankful for an understanding hubby, too).

The one light in all of this is that last week we secured a permanent school placement for Katie, which is huge, and wonderful, and takes a giant weight off my shoulders. Not that the universe needed to replace that weight, but that's life. I'm glad K will remain somewhere she is happy, and thriving. One hurdle down, a zillion to go.

But, these past couple weeks have put a lot into perspective. Life is short. Anything can happen. I'm in control of pretty much nothing. So, the things I can control, I will. I need to make sure my family is happy. I need to make sure I am happy. I need to be selective with those I let into our lives, and not live in that glass half empty way. In the end, we are all responsible for ourselves, our actions, our decisions. How we choose to live. What is important, what isn't. What stress is necessary, and what can be left behind.

(Blah, blah, blah, etc, etc, etc, please stop waxing philosophical, says the audience, eyes rolling).

Love,

Your favorite pseudo-blogger (I am, right?)

J

Really, it's OK

I grew up going to our town's 4th of July parade, and once I had children, I was excited to share the experience with them. When K was little, she liked the parade. She would stand watching all the trucks go by, totally enraptured. She'd dance when the bands walked by, collect the candy thrown from the passing floats, and genuinely had a good time.

Until one year, she didn't.

Two years ago she had camp on the 4th of July. I had given her the choice of attending camp, or coming to the parade with us, and she chose camp. Heck, *I* would have chosen camp. They had their own festivities there, and when I say she loves her camp, I mean it.

Last year, I decided not to enroll her in camp for the 4th, because I wanted her to be home with us. Except, she wasn't having it. She couldn't take the heat, or noise, or waiting. She ended up staying with my mom at her house until the parade was over, and I felt bad I hadn't just sent her to camp, after all.

This year I gave her the option of coming, or staying with Grammy. Let's just say, that choice was a giant trigger. Making any decision is always overwhelming for K, so I finally made the decision for her when I saw how hot it was going to be. To say this kid has an intolerance to heat is an understatement, and I knew we'd go from zero-meltdown before we even made it to our seats. She was relieved, I think, after I told her she'd just be staying with Grammy, and I knew it was the right choice.

So, yesterday morning I dropped K off with my mom, and headed with B to the parade. He and my niece had a lot of fun together, especially collecting all the candy, and K had a relaxing morning playing on her iPad somewhere cool, and fire engine free.

Now, I suppose I could write about how heartbroken I was that K wasn't at the parade. Make a big deal out of how autism robbed us of this experience.

Except, it would be a lie.

I won't be heartbroken because she can't sit at some parade. If we always look at what our kids can't do, and equate it with heartbreak and sadness, we are going to end up equating them with heartbreak and sadness, which, no.

Just, NO. 

If tomorrow we head out to the fireworks, and decide that it's not something K can handle, it will be OK. I'll happily miss a fireworks show so I can snuggle with my daughter, and watch Pound Puppies or Littlest Pet Shop on Netflix.

And the last thing I'll be is sad about it.

And Then There Were Two

I quickly mentioned it in a previous post, B's newfound diagnosis. One that isn't all that suprising, for those in the know.

Aspergers.

To be honest, since B was a toddler, I've had my suspicions. The sensory issues (OH the sensory issues!) The way he uses language (I sometimes call him my little, old  man, because of the vocabulary he showcases). The ridgity. The stim-like behavior. The restricted interests. The way he prefers older kids, and has trouble getting along with those his own age (sometimes, 4yo's don't appreciate being chastised because they don't understand the finer points of astromony).

Yet, there was a part of me that thought some of his behaviors were learned. The only model he had for a very long time was K, and a lot of B's behaviors mimiced her's. But, there were definite differences, his language abilities being the most obvious. Although, having a first-born who was so language delayed, he could have been typical for all I knew!

I kept myself from having him evaluated for a long time. I wanted to see what happened this year in Kindergarten. If maybe being in "real" school all day, around his peers, would somehow help.

It didn't.

And so I made the call. Of course, in the world of special needs evaluations, time practically stands still. I made the intial call for an appt last September, and only last week did we recieve an official diagnosis.

As I sat in the meeting, going over his testing results, I wanted to tell the woman to just get to the Aspergers part, because I just knew. I had also been down this road before, and didn't need my hand held. Give me the report, make the diagnosis official, and let me get on with life.

But, I kept my mouth shut. I allowed her to go over the testing, piece by piece, forcing myself to not blurt out that I already knew the results, and just needed a copy to send to the school. The whole point of the evaluation was to get him what he needed at school. Period.

You see, B doesn't really bother me. He doesn't worry me. He is an intense kid, yes, but I embrace it. I don't look at him and see a list of deficits. He's happy. He's so, so smart. He has his moments, and struggles, but I just don't have the same concerns I do for K.

His diagnosis made me realize something else. If K was a typical kid, and I knew nothing about Autism beyond Aspergers, I would have a completely different opinion of the "disorder". I understand where people are coming from, who either have Aspergers, or a child with Aspergers, who don't see it as a bad thing. B is only 6, and I know things can change dramatically as he gets older, but right now, it's not a hugely negative thing. I get it.

But, I get both sides. I also get having a kid who was non-verbal for a long time, who throws meltdowns of epic proportions, has no friends, hates life, and is generally unhappy. Who struggles academically. Who has immeasurable anxiety. A child for whom I worry constantly.

If I only had B, my perspective on any Autism disorder would be a lot different. I am grateful that my experiences allow me to see both sides, and how different things can be within the spectrum.

SO.VERY.DIFFERENT. 

Am I saying all those with Aspergers live care-free lives? No. Am I saying all those diagnosed with another disorder on the spectrum live horrible lives? No.

What I am saying is that within the spectrum of Autism, there is also a spectrum of how people are affected, and we have to remember that, and never, ever invalidate the feelings of others. I can personally attest to how differently people can experience Autism. I see it everyday in my own house. I think it's an important point for us all to remember.

As my kids get older, I am seeing ASD (autism spectrum disorder) as just as part of our lives, becuase it's here to stay. I've stopped fighting the diagnosis, the autism itself, and instead have put my energy into making sure my children have the best lives possible, being autistic, or with autism (whichever they choose, or don't choose, one day).

But, I continue to understnad both sides. I continue to support my friends who wish for a magic pill to take it all away, and I support those who choose to see only the positive aspects of Autism. The only life I live is my own. The only experiences I have are my own. I won't ever speak for anyone else, which I've said ad nauseum, and will continee to say.

I now have two in the "club".

And I'm OK with that.

Determined

Lately, I've been reading blogs authored by adults on the spectrum. I have fought against doing this for a long time. To be frank, part of me doesn't believe I can learn anything from a person who made it to adulthood without a diagnosis. We don't make it through a day here without autism ruling the roost, let alone 20, 30, 50 years.

But, I am trying to remind myself that things were different "back in the day". That their lack of a diagnosis in childhood doesn't mean they weren't autistic. They just lived in a time where doctors knew too little, and help was non-existent. Where parents were told their children might be schizophrenic, or bi-polar. Or shy, introverted, weird.

Even if these adults aren't exactly like K, they deal with a lot of the same issues. As she approaches her 9th birthday, and as things are really starting to bottom out, I find myself wanting to know anything about what the future might hold.

And, honestly, if K is more severe than these adults...I'm scared to death.

These are people who got through college. Living away at dorms, even. But, who still have an immense amount of difficulty in daily life. Whose autism gets worse as they get older. I can't imagine K ever living in a dorm. At least, not right now. And if things only get worse with age...

One thing I read really struck me. A woman wrote on her blog that, although people never really knew of her issues when she was a teen, throughout her whole high school career, she just wanted to die. Every night she went to bed, hoping not to see morning.

For her, "faking it" took it's toll. Now, as an adult, she can no longer fake it at all. She needs a lot of help just to make it through her day. She cannot work, drive. Her college degree goes unused. She's had multiple hospitalizations due to suicidal thoughts, and unbearable anxiety. And, while most adults on the spectrum write of neurodiversity, and the ways in which their autism makes them better, she is honest about how her life would be better if autism didn't play a part.

We have such huge issues now, and have for years, I can't imagine what the future holds. Or, rather, I don't want to imagine. I am completely fine with K living with us forever. I will accept whatever she chooses to do or not do. What I cannot accept is her ever wanting to die because of  expectations we, or anyone else, set for her.

I never want her to feel that she has to be "normal". That, no matter the cost, passing is the goal. Those who have followed me for a while know that I just want her to be happy.

Just.Happy.

I have feared for a long time that I could end up with a teenager who feels so lost, so depressed, that...well...I can't even put it down in words. Her self-esteem is already so low, I can't fathom it getting lower. Add in puberty and hormones, and it's like the perfect storm.

I really just feel frozen. I am so unsure as to what my next step(s) should be, and I don't want to make the wrong choice. Do the wrong thing. Make my daughter feel like some of these bloggers...who think life isn't worth living because of their autism.

In a way, reading these blogs is probably like Googling a headache, and deciding you have a brain tumor. Autism is a complex thing, and it isn't going to affect everyone the same. I should remember that a lot of these adults didn't receive any help as children, and maybe that's why they struggle so much now. That K's road might be different because we have fought for her, and we want to understand her needs, and give her the best life possible. Not a life we have planned out, but a life that will make her happy.

K turns 9 next month, and birthdays are sometimes more worrisome than they are joyful. We have so much going on right now, I wish I could just stop time, catch my breath, and figure things out.

But, alas. Time stops for no man (Or woman. Or child). Awareness on my part is key, and I hope K lives a fabulous life, where she looks forward to every new morning. If I have learned one thing from these adults on the spectrum, it's to accept and love my children as they are. To be understanding. To focus on their gifts, and not their deficits. To make others do the same.

For that, I am grateful.