Sunday, December 29, 2013

Canceling Christmas

Christmas day was...difficult here. We had my family over because I knew K would probably need a break, or 7, and because my sister-in-law is visiting from Germany. I figured it would be more comfortable for her to say here.

The day started out fine. The kids got up around 8am, which is preferred over the 5am wake up call my sister and I used to give our parents. Present opening went well. The kids were excited over everything Santa brought, and it looked to be a good day.

Now, because we have the worst timing ever, we are currently redoing our family room. It is the big room that sits over our garage, that is great when we are hosting a lot of people. The other rooms in our house are small, and right now, really crowded. We moved our TV to the "library" (the room that holds our IKEA bookcases, which we have tried to fancy up by referring to as the "library"), and the furniture in the library has been moved around so that the recliner is pretty much sitting on top of the couch. Add the Christmas tree we usually have in the family room, a couple end tables, and too many presents, and there is about a square foot of actual "moving around" space.

We thought the family room would be complete by Christmas, but our new floors got in late, and when your husband is doing all the work himself, while, you know, holding down a full-time job, things don't get done quickly.

I started to regret offering to host, because a lot of us were going to be squished into this one small room, but I figured people could spread out in the kitchen and dining room during non-gift-opening-time, and so things would be OK. Plus, we do have a playroom upstairs which I figured we could banish the children to for most of the day.

I knew the day might be hard, but I hoped for the best. K is easily overwhelmed, but there are times she rallies and is fine. I never want to go in with a negative attitude. Why wouldn't I give my kid the benefit of the doubt, right? Too often I think we set our kids up for failure because we expect failure, and I never want to expect my children to fail. That's just not fair to them.

Things started to get sticky when my youngest sister was late showing up. Like, 30 minutes late. Not  a big deal to most, but to a kid who is waiting to open gifts, and who can't understand why we have to wait for everyone to be here, it's torture.

And so the anxiety began.

Unfortunately, with K, when the anxiety begins, it doesn't really stop. Especially not when there are hoards of people at her house. It built up and up until she started announcing that she was "CANCELING CHRISTMAS".

I forget what the final trigger was, but she was d-o-n-e, DONE. Similar to when we went out to eat last weekend, and after getting upset about the type of cup she was given, she stood up and announced that the restaurant was going to be shut down. She does not care who is around. She seems not to notice. When her anxiety? Upset-ed-ness? peaks, she picks a phrase and goes with it. Over, and over.

And over.

I'm sure some of you can relate.

Thankfully we were at home, so announcing that Christmas was canceled wasn't that big of a deal. We didn't have to quickly make an escape anywhere, and my family gets it, and tries to find the humor in it (not laughing AT her, don't mistake me for saying that. I just mean instead of falling into the pit of despair, we all take what she says in stride, and move on. You can't live in big deal world and survive, if you get what I mean. I know people who live in big deal world, where everything is a big deal, and very dramatic. That's is just not sustainable for my own mental health.)

Eventually, K was distracted by a marker set B had received, and all the kids started making drawings. Between that, and the ability for K to escape to her bedroom whenever she wanted, things went far better than if we had gone somewhere else for the holiday. Know your population, that's what I always say!

On the B front, well, his issues are different. Let's just say he hasn't learned the finer art of just saying "thank you", even when you don't like something. Nor does he understand that even though you make a Christmas list, you might not get everything on that list. He has already begun his list for next year, starting with the things Santa forgot. But, for the most part, B doesn't have the same anxieties or feelings of being overwhelmed. He happily played with his cousin, E, and wore his super cute Santa costume all day. Santa B just has to remember that his 14 month old cousin, A, can't really catch herself when he decides he's done having her sit on his lap. Thankfully I was there to make sure no teeth were lost when B pushed her off his lap, and she went barreling face first towards the hardwood floor.

Today we celebrate Christmas #2 with my dad and his girlfriend. Maybe K will cancel it, maybe not, but I go into it hoping for the best. I'm also glad we are hosting again, so that K has the comfort of her own house and bedroom. Do I wish she was able to celebrate with us the whole day? The answer might surprise you because it's "no". I don't lament the things that could be, but celebrate what is. If she spends some time with us, fabulous! If she needs to spend most of the afternoon upstairs, that's fine, too. Focusing on the good is a choice, and one I have consciously made because it's not something I've always done. It's easier to get dragged down by what you think you've lost, instead of seeing everything you have. Even in the really hard times, there's always that sliver of light.

Find it.

Hold onto it.

Celebrate it.

Now, I wonder if I can get B back into that Santa costume...

Saturday, December 28, 2013

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.

Friday, December 27, 2013

What a Difference a Year Makes

I think back to last Christmas, and how different things were. The emergency IEP meetings right before vacation. Literally, the day before winter break. The decision to pull K out of her mainstream class, and place her in the autism class, in-district, but a half hour away (an hour in travel time by school van.) Picking up my child's things, as though she had lost her job. A cardboard box of stuff that would sit in our dining room for a year, because I was unable to go through it. Hopeful that things would finally be OK, unaware of everything ahead. 

I focused hard on the good times last Christmas. I shared a few pictures here. I held on tight to the belief that things were going to get better, because they couldn't get worse. 

This past year we have gone through a lot of changes. K, especially, has had to deal with more than any 9yo should. How my husband and I survived this past year, still married, I do not know. 

Then there were B's medical issues that literally began the week after we resolved K's school issues. 

HaHa, universe, OK, I get it. Jokes on me! 

But, we are ending the year in a much better place than where we began it. K is in a good school, B's issues are under control for now, and we are going into 2014 without some giant monkey on our back. I think we've learned we can weather a lot as a family, even if at times we were thisclose from not making it (and by thisclose I mean Googling divorce lawyers, and places where I could check myself in after my school-induced nervous breakdown...) 

Whatever 2014 throws at us, we're ready to take it on. It's so cliche, I know, to say we've been made stronger by what we've been through, but it's the truth. 

2013 also brought about a big change in me, personally. How I view autism. How it's OK to just stop. Stop therapies, stop fighting my own kid, stop believing the only goal is that of "passing". It's one thing to say it. One thing to blog about it. It's a totally different thing to actually act upon it. You can't say you respect your child, that you are listening to them, if you are forcing them to attend social groups every week, or wrestling them out of the car for speech. That's not acceptance. Acceptance, for me, meant being brave enough to break free from what I was always told I should do, what "experts" told me to do, and doing what feels right. 

It's made for a calmer life. I say this not to bully anyone into becoming me, but to say I wish I had made this change sooner, and that someone told me  it was OK. 

It's OK. It really, really is. 

It's not to say we still don't have really hard days. Anyone at my house Christmas Day knows that isn't true. But we'd have those hard days even if I was throwing my kids out of the car for therapy after therapy. I know because that was my life for years. It doesn't have to be yours. And we have more good days, more peace, because of how I've grown this year. Because I stopped and looked at everything we had going on, and was honest with myself about what I was telling my kids with my actions, and what they were telling me with theirs. 

It's about time, right? 

So here's to a better 2014. Or at least a more confident 2014. And maybe a 2014 when I blog more ;) 

 But, let's not get ahead of ourselves. 


K's got the cool girl Santa hat :) 

Santa B and his cousin E. 


Friday, December 13, 2013

When a Pet Dies

This week we lost one of our cats, and by lost I mean he died. I almost told the kids we lost Finn, but didn't want them thinking he ran away. Saying "lost" just feels easier than saying "dead" or "died". Those words seem so cutting. So hurtful. So in-your-face final.

But, then, that's what death is.

K understands death. She knows it means your body (or an animal's body) no longer works, and that person (or animal) is not coming back. Religion is too abstract a concept for her at this point (not that we are religious), so "heaven" offers no comfort. If she can't see something, it's hard for her to believe it exists. This week, though, I would have gladly set aside my atheist tendencies if it would have brought her a moment of peace.

It's just so hard to see your kids in pain.

Finn's death was sudden. Very, very sudden. He went from seemingly healthy, to extremely sick within 2 days. I thought maybe he caught a virus, and was just dehydrated. Or, I tried to convince myself of that. I knew in my heart as we left for the vet, Finny wouldn't be coming home.

Feline Leukemia (not actually cancer, but an immune disorder.) Something he's probably had since birth. Something I guess he was never tested for (I didn't realize not all vets consider it a routine test.) There is no treatment, anyway. How long a cat lives with it just depends, but most don't live past 4. Finny made it to 5.

Breaking the news to K was one of the hardest things I've ever done. Finn was our cat-dog. He loved to cuddle, all day, everyday. We have 2 other cats, but he was the one who sought out human companionship. As much as I sometimes found that annoying (sometimes you want to read a book without a cat in your way), K loved it. It was the one animal who would stay with her for as long as she wanted, like a loyal dog (he also drank from the toilet and ate trash, hence "cat-dog".)

K has cried every day since Finn passed. Wednesday night I just laid with her as she cried. I didn't think it possible someone could cry for as long as she did. It's hard to convey how it feels to have your heartbreak over and over, with every sob, every gasp, every heave.

Having a pet die is part of life. An unfortunate part of childhood, sometimes. Something you know will eventually happen when you adopt that fluffy little kitten, or playful little puppy, but which doesn't deter you because of the joy pets bring. But Finny shouldn't have died. Five just isn't a long enough life for a cat. It's just not fair.

Now, you've read a lot about how K is dealing with this, but I haven't mentioned B. He didn't take it as I expected. He wasn't upset. He asked lots of questions (like if Finn can be mummified), but didn't cry. He told me that he just "doesn't have a heart for animals, only humans". He said Finn always ran from him anyway (active little boys and cats don't always mix.) He doesn't get that death is sad just because death is sad. He never bonded with Finn. He never played with him. He is very matter-of-fact, black and white. Finn is gone, but that doesn't change much for B. He wasn't a big part of his life, anyhow, and death just doesn't have a deeper meaning, or greater sadness for him at this point.

It worried me at first, but then I remembered having lunch with K at school a couple years back, and one of the little girls at her table told me how her dog had died. I assumed she meant years ago, but, nope, just that week. There was no look of sadness on her face, no tears. She told me he died, and went back to eating her lunch. All kids are different, I suppose. I should probably be thankful I am only dealing with one upset child, not two. B is young, and I should be happy he's a bit sheltered from the pain death brings.

As for my husband and I, we are dealing with the guilt of not seeing something was wrong. Not that there's anything we could have done, but we could have been prepared (and, yes, we are making sure our other cats are tested.) Maybe noticed subtle hints. Watched Finn closer. In reality, I'm sure there isn't anything we could have done, but the guilt is still there. We have indoor cats because we want to make sure nothing happens to them. An illness like this was something we barely knew existed, let alone something we thought we'd ever experience.

And of course we are heartbroken. We thought the cats would live forever, something we joked about often while sweeping the floors for the umpteenth time. The finality of death is always hard, too. Especially when it's so sudden. Too sudden.

Sure, it's just a cat, and no, we are not people who equate pets with children. But, he was here, a part of our family, and now that's he gone I realize just how big a part. I miss my snuggle buddy more than I expected. So much more. AND, I can't promise there isn't a new cat in our future (especially because our other male cat, Max, was very attached to Finn.)

Yes, we still have a lot of other pets, and I am probably crazy for even entertaining the idea of a new kitty down the line (hey, I even surprised myself), but I guess you really don't know what you've got 'til it's gone.

So, that has been our week. A terrible, no good, awful, very bad, week. I know it will get better, but for now, we're just sad.

We're really going to miss you, buddy...
I hope we gave you an awesome 5 years. 




Monday, December 9, 2013

Digging Out

It snowed here last night. Not the kind of snow that is beautiful and fluffy, but the kind of snow that is icy and dangerous. A good metaphor for what we've been dealing with these past few days.

There are so many beautiful parts to K. Some things that probably wouldn't exist if she wasn't autistic, and that I am loathe to wish away. I have never said that autism comes without it's challenges, or that there weren't times I screamed at the universe to just take it away. But, as K's grown older, and I've grown as her mother, I've learned love and acceptance are the only true paths to happiness, for K and myself.

But there is one thing I just cannot accept, and that is the anxiety.  Whether it's part of the autism, or something unto itself, if I could "cure" anything that's what I'd choose. Anxiety seems to be the one thing that I cannot accommodate. No matter what I do, the ways in which I try to make sure K is comfortable in her world, it is relentless.

It makes my child scared to decorate the Christmas tree, because what if an ornament breaks (even though we say it's not a big deal if one does.) It makes my child not want to leave the house, because what if something bad happens? It makes my child cry for hours on end, most of the time unable to tell me what is making her feel so awful. She just doesn't know.

"I don't know, mommy" are the words I hear most often. There is her feverishly rubbing her belly, up and down, crying that she doesn't know what is wrong. Why she is nervous. What I can do to help. Anxiety isn't a "behavior". It isn't something that seems to have a cause and effect.

For the past several days, things have been getting worse. To the point that we cannot leave the house. Even thinking about taking a shower, the first step to going anywhere, leaves her frozen. Sobbing. My verbal child has began scripting a lot of what she says, unable to find words for what is happening to her. Unable to put together sentences of her own, because she is under such attack. There are no moments of rest for my girl. No hours in the day when she isn't ravaged by something so unforgiving. Watching her slide down this rabbit hole, and feeling helpless to stop it, is not something I'd wish on anyone.

Mostly, I don't wish it on K.

We've tried so many medications. Some work for a while, some not at all. We have a doctor who is unwilling to try two meds at a time, so we are now on a quest for someone who will. She's been weaned off her meds to get a baseline, and now we are under the wire to find something new that works, and someone new who will work with us.

When we saw K's anxiety being made worse by school, we fought to change her placement. When I've seen her anxiety made worse by a certain therapy, we've stopped it. But right now, I have no clue what is making it so terrible. A storm has come, and we are trying our hardest to dig out. I want to see more of my beautiful K, and less of the dark cloud that has taken over.

Monday, December 2, 2013

Holiday Lists?

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This time of year a bunch of different lists go around, with "ideas" on what to buy your autistic child for the holidays. I'll admit, it can seem more difficult than buying for a typical child who has a list a mile long (or B, who just circles everything in the Lego catalog), but it only becomes an issue when we try to think of gifts, instead of looking to our kids.

K rarely offers up gift suggestions. I can walk her through Toys R Us or Target, and she'll just wander the aisles, not really choosing anything. Once in a while she'll pick up a toy, and I'll ask her if it's something she'd like. Her answer is always "I don't know." It used to drive me mad. I had no idea what to buy for her. I'd try to figure out what kids her age liked, thinking I'd somehow hit the gift jackpot that way. I ended up with way too many toys she never played with, and a lot of money down the drain.

Then I stopped trying to think of things she would want, and started looking at the things she likes. She likes arts and crafts, so one year my sister bought her some plastic bins, stocked with goodies from the craft store. She loves animals, so I started getting her FurReal Friends, and gift cards to Build-A-Bear. Do we need more stuffed animals? Absolutely not. Does she love them like they were her children? Absolutely.

K is also a sensory seeker, so she loves things like Moon Sand and Orbeez. You will often find those toys on those "special needs" lists, but the thing is, some kids will hate them. B, my sensory-avoider, doesn't love getting messy or sticky, so some of these "fool-proof" toys don't work for him.  

This year K is obsessed with My Little Pony, so almost all of her gifts are related to that. Sure, maybe some people think it's weird to have every single gift be the same thing, but that's what K likes right now. Why would I try to mix it up just to mix it up?

B, as I said before, is never lacking for ideas. He makes me take photos of almost every toy we pass, and wants everything from every catalog that we get during the holidays. With him, it's more whittling the list down. I find he forgets about a majority of the things he says he wants, and sticks with what he really likes. Dinosaurs (this is his "thing", like animals are K's "thing"), Legos, any type of vehicle-all big hits with him. They are also things he will actually play with for a long time.

The truth is, there will never be one list that will be a good fit for every autistic child, and when we try to think of gifts on our own, it can be a giant fail. Watch your child. Don't be afraid to hone in on the stuff they like (it doesn't have to be viewed as a bad thing), and it will be much easier when you hit the stores. All of our kids have special interests, it's part of who they are. Playing to those will make them happy, and lessen the stress we feel around the holidays.

So I say forget the lists! Don't waste money on things a complete stranger says your child should enjoy. You know what your child likes, even if it's 10 cans of shaving cream to play in, or a long rope to pull things around (yes, B owns a long rope to pull things around.) The holidays will be a lot more merry (and a lot less stressful) when we let go, and "listen" to our kids (even when they don't say a word.)



Tuesday, November 26, 2013

The D Word

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There is something I've been fighting against since K was a toddler. It's the idea that because she is a girl, her reactions to things, her behaviors, are rooted more in the dramatic arts than in any disability. Many times I have been told that K is just "being dramatic", or that girls are just overly emotional. While none of that explained why my kid didn't speak in anything even resembling a sentence until she was four, or why she didn't play with toys, or couldn't pedal a bike, it was always used to explain meltdowns, and outbursts, bolting, and social issues. 

Usually I hear these types of comments from "laypeople", if you will. Those untrained in autism or special education. Those who want to blame my parenting, or who think K would be fine if, you know, she was their kid (yes, this has been said.) Then there are just the "funny" passing comments people make. Comments they find funny, but which make me cringe. Or maybe they think calling my child dramatic takes away some of the sting they assume I feel because my child is autistic. 

Drama can be changed. Cured. Calling K dramatic makes it seem like her challenges can be easily abated. Except, you know, it's not drama. 

Usually I just allow these comments to roll off my back. I can't spend my life trying to convince people that K deals with some very real issues. I'm can't spend all my free time attempting to disprove "Rainman" or explaining the meaning of the word spectrum. 

But last week, the D word came from someone I wouldn't expect to say it. Someone who is supposed to be helping K. Who, previously, was very concerned about my daughter. Last week, after a meltdown, this person rolled her eyes, saying "Oh, the drama!"

My stomach dropped. This is someone we have hired to get down to the nitty-gritty. To really figure out K's needs going forward. I had a lot of faith in her at first, but after that comment? I feel like we are wasting our money. Like there's no way K is going to continue to get the help she needs if the person charged with getting her that help thinks an anxiety-fueled meltdown=drama.

I loathe the D word. I hate how it's tossed around when you have a girl on the spectrum, as if everything can be explained away because, hormones. Because that's just how girls act. No one has ever used it with B. The process of getting him diagnosed was much easier, even. People expect boys to be autistic...but girls? Well, for a lot of them, the D word comes before any real diagnosis, or any real support. 

Maybe it was an off-the-cuff remark meant to break the tension. Maybe I'm overthinking it, as I'm wont to do. But, if we keep perpetuating the idea that girls are just dramatic, and all of their struggles can be explained away by that (or other things, such as shyness), they will remain underdiagnosed, and lacking the support and services they need. 

At this point, I can only hope for the best, and that this person remains dedicated to helping our daughter with her (well-documented) struggles. Maybe it doesn't seem like a big deal, but when you are a parent of a child who faces many real challenges, having anyone not take it seriously, that stings. 









Thursday, November 21, 2013

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.

Wednesday, November 20, 2013

A Cure

It's been rolling around in my brain lately...the idea of "curing" autism. Obviously, the events of the past week have brought it to the surface. Sometimes it can look like cure vs. no cure, but I don't see it that way. I see it more as, why do we want a cure? How do we go about finding a cure? What message do we want to send to society when looking for a cure?

To be completely honest, there are parts of my children I love that I know are due to them being autistic. Parts I would never, ever want to strip away. K's intense love for animals. B's literal mind. I mean, the conversations I have with my just-turned-7 year old are something I would never want to lose. K leaning into me, head buried in my hair because it feels good to her, is not something I want to go away.

There is, of course, the anxiety. The times it is difficult to communicate. The reactions of others to my children's behaviors. Those things? Yes, I wish I could wave a magic wand and make them non-issues. B's Epilepsy, his GI issues, though maybe not directly related, are things I wish I could cure. But I don't have a desire for them to be typical.  I'd be losing something very precious to me if did...my children as they are now. At their core. Their personalities, shaped by a different neurology, sure, but not one that's inherently bad.

What's bad is how autistic individual are treated. How they can be looked upon as unintelligent creatures, because they can't sit still for a test, or sit quietly when instructed. How we look at scores on evaluation after evaluation, and think that's the sum of our kids. Their worth, measured out in IQ points, or academic success, or social progress. And we can say that isn't how we measure their worth, but when we wish to cure everything, what we are saying is they would be worth more if they were like everyone else.

I think autism can be much more than just a different way of thinking. I respect individuals who choose a neurodiverse label for themselves (as I will embrace how my children choose to see autism in their lives), but I won't make a generalization that places all brands of autism in the same box. That's not my place.

However, I want us to be careful when we talk about wanting a cure, and understand what that really means. It means the child you have now disappearing. Maybe just a little, but maybe a lot. Maybe you are OK with that, and that's your choice, but it's not mine. Not anymore, anyway.

So, I don't think the discussion, this argument, is cure vs. no cure. I think it's about deciding how we see our kids, what we are willing to lose, and how we are willing to portray our children to uncover said cure. It's a complicated issue, in my mind. Not cut and dry. Not one that merits saying, just give me a magic pill, because it's all or nothing.

I want my children to be happy. Free of physical pain. Fulfilled in their lives, whatever that means to them, not me. I don't want them paraded out as burdens to our family, or mistakes within the gene pool.

I always want the focus to be on the positives. How I've become a better person because of my kids. How I want to mitigate the anxiety and medical issues, not because I want different children, but because everyone deserves to live a happy, comfortable life. A life where they are respected and cared for, and not seen as the scourge of the earth. Does that sound harsh? Maybe. Is it what a lot of people believe about autism because of the message certain organizations send? Yes. If you don't think that's true, you are fooling yourself. One only needs to read the comment section of any given article in the mainstream media to know it is true.

I suppose I do want a cure, in a way, but a different one than a lot of folks. It's a complicated issue, my friends, and one that deserves a lot of thought. I just ask myself, how do I want my children to view themselves? That's the light that leads my way.

Tuesday, November 19, 2013

My Child is a Victim of Your Fear-Mongering

Yesterday I read a few blog posts that featured kids talking about what being autistic means to them. They were positive in their descriptions, and readers ate it up. I wanted so badly to participate, but I didn't. Not because K is unable to do an interview, but because I knew it wouldn't garner the same results. 

I knew K would probably describe autism as a bad thing. 

I didn't want to write about it, but an email from a friend made me realize that it was something I had to share. Something a lot of us are dealing with, due to forces beyond our control. Because we can't be with our children every second, protecting them. I've talked a lot about how viewing autism in such a negative way can affect those living with the disorder, but what better way to really show you than to relate it to my own child. 

Since K was 3 (maybe before), she has had some incredibly negative experiences. She was treated poorly by those she (should have) trusted most. People who didn't try to understand and accept her, but instead punished and ignored her. Being aware that you are different can be a curse when those differences are pointed out as your greatest weaknesses. When every therapy you attend is meant to change the person you are, because the person you are is broken. You can only do so much as a parent. The truth is, when a child is attacked from all sides, when she doesn't feel comfortable anywhere, those experiences set in deeper than anything you say as a mom. 

And that kills me.

I have seen firsthand what happens when autism is viewed as something that must be eliminated at all costs. When a child is viewed as a drain on resources. As a difficult kid, who needs to learn how to be like everyone else. Who is told what to say and how to act, because what comes naturally just isn't right. I've tried to put myself in K's shoes, and it's so, so hard. I can't imagine what it must be like to constantly pretend to be a certain way in order to gain approval. In order to be rewarded. In order to stay safe. 

I am out there screaming from the rooftops that the way we view autism needs to change, because I see how the way we view autism now hurts my kid. So, no, I am not naive to believe things could be different. I am not living in some magical world where autism is wonderful, and my child is adored for her differences. I am living in a world where my child has been beaten down because she is unable to pass, and I am scared where this path will lead as she gets older. 

I don't want K to hate herself. I don't want her thinking that being autistic means she's a bad kid, or someone unworthy of love, acceptance, or happiness. My child understands there are those who don't like her because of how she behaves, how she thinks, or the way her body can betray her. Sure, we have moved mountains to change her environment. I've changed my own opinions about autism when I saw what was happening to my kid. When I stepped back and stopped focusing on me, and started focusing on K.

But, a lot of damage was already done. It will take time for that to heal. I will work tirelessly to make sure she finds a way to be self-confident. That she knows she is the wonderful, beautiful, smart, worthy-of-all-good-things in life, person I see. And that she knows being autistic isn't something to hate, or something to be hated for. 

So there will be no cute or profound interview here. Not yet. But, I'm working on it. I just wanted you to know that people are affected by the messages of fear tossed out to illicit donations and pity. By those only seeking a cure for this epidemic called autism. By the way society treats autistic individuals, because some need to spread intense negativity at every turn. 

I know because my almost 10 year old has suffered for it. And it needs to stop. Now. 


Monday, November 18, 2013

So, About Epilepsy Awareness Month...

Cure for Epilepsy? Yes, please! 

November is Epilepsy Awareness month. As you know, we were thrust into this club over the summer. Without warning. With no history of seizures. No illness, no trigger, nothing. Although I am well aware that a lot of kids on the spectrum experience seizures, it was something I never thought we'd face. My kids are older, healthy, and I was under the assumption something like Epilepsy would reveal itself earlier in life.

Well, 5 Grand Mal seizures over the course of 3 weeks changed all that. One hospitalization, and one prescription for Depakote later, November suddenly means something different. Sure, I've known people whose children have seizures, but without first hand experience, I didn't get it. How scary it is to watch your child seize. To watch them take four.long.hours to get back to "normal" (Ben does not have a short recovery time, and seeing your child lose the physical ability to speak, while looking at you with sheer terror in his eyes, it's not something I'd wish on anyone.) Seeing your child change after seizure #1, his behavior, just something about him, it's devastating.

B is still B, but he's a little different now. Epilepsy brought with it severe hyperactivity (I describe Ben as my little pinball.) It brought with it bouts of him looking really sick and really pale, for no apparent reason (this started after the seizures, and we have no idea what's causing it, yet.) It brought with it sleepless nights (for me), and took from B things which he loves (gymnastics, swimming without a bubble, using the playground equipment at school.) It's led me to scary Google searches, and worrying what this will mean for B down the road, if he isn't one of the lucky people who "outgrows" it.

Epilepsy brought with it doctors who are so used to seizures, they fail to understand parents like me are not. Who hand you a prescription for medication that could pretty much kill your child's organs, and think you shouldn't be concerned, ask any questions, or request further testing.

Epilepsy brought with it no explanation to why this was happening to my boy. Doctors can't even guess. No one knows what causes it, unless there is a specific genetic condition found. My child's brain went haywire, and no one can tell me why. What it means. What to expect. Nothing.

The truth is, all I knew about Epilepsy came from TV, or maybe from a friend here or there. People flailing around like a fish out of water (not at all how an actual seizure looks.) An infant getting a high fever, and having a seizure. A child staring off into space, or someone finding seizure activity during a sleep study. If anything, I thought those were the type of seizures we'd experience (not that those aren't scary or serious, too.) They just seem more common, especially with kids on the spectrum. I was in no way prepared for the kind of seizures B experienced, and didn't even recognize what it was the first time. I had no idea how scary it would be to receive an Epilepsy diagnosis. Everything that could come along with it. That sometimes even unexplained death occurs.

Death. 

I've been through a lot with autism, but I have to admit Epilepsy scares me much more. I don't care if my kids live with me forever, I just want them to live. I want them to be healthy. Something potentially taking that away...I can't explain how it makes me feel. I really can't. It's what keeps me up at night.

So, while I think it's time to move on from autism awareness (I have very different thoughts about each condition), I think it's time for people to actually become aware of Epilepsy. I know I had no idea what it really was, or what to do if I ever saw someone having a seizure (if I even recognized what it was), before B was diagnosed. I even had someone refer to B's seizures as "fits", so clearly educating the public as to what Epilepsy is, and what is isn't (he's not crazy!), is important.




For more information on Epilepsy (because you should 100% educate yourselves), check out these websites:

Epilepsy.Com

Epilepsy Foundation

Danny Did

Talk About It




Sunday, November 17, 2013

When Does "Awareness" Stop Being Enough?

Autism is a complicated disability. Even within the same functioning labels, there are great variations. There is a rift within the community because many people feel their autism, or their child's autism, is THE autism. Anyone not affected by their specific brand isn't really autistic, and doesn't really get the challenges that come with the diagnosis. The real diagnosis, that they possess. 

This is how it feels to me, anyway. There might be talk about how functioning labels are inaccurate, or how "if you've met one person with autism, you've met one person with autism", but the truth is there are those who hold tight to those labels. Who believe the variations in the disorder are because most individuals diagnosed aren't really autistic. Not like their kid. The struggles other families face can't compare to their struggles. If there was an award for most affected by autism, they would win.

We can say we wish the divide within the community would close, but until there is acceptance that all individuals, and all families affected by autism are, well, affected by autism, things will never change.

We say we want autism awareness, but at what point do we move on from that? 

We say we want acceptance from society, but how can that be achieved when those within the community can't even accept that what autism looks like in their child doesn't have to be what it looks like in someone else? 

We say we want services and support, but only rally behind whichever services and support we feel benefit our own kids.

Insurance reform is great, unless you choose Floortime for your child. Or any therapy beyond ABA. 

Reaching out to the newly diagnosed is great, unless your kid is turning 18 with no place to live, and no educational or vocational support. 

Walking around a track for autism awareness is wonderful, until you realize all the money you've raised isn't really helping your family. Or any family. Not those on the ground who need real, tangible help. Not if you don't care about a cure, and just want to make sure your kid is alright after you're gone. 

Slapping a magnet on your car is all well and good, until you spend your life savings on fighting a school district over your child's education, because all the awareness in the world doesn't help people understand what your kid really needs to succeed.

And all the awareness in the world doesn't prevent our kids from being thrown in seclusion rooms, or restrained, or treated like 2nd (3rd? 4th?) class citizens in the classroom.

When do we stop kidding ourselves and realize the kind of awareness some people/organizations spread is based on fear, putting autistic individuals in jeopardy? The message society gets is that these kids, these adults, are burdens no one can bear. Broken human beings who must be cured, or eliminated from the gene pool. Who don't deserve a full, happy life. Not when their sole purpose on this earth is to destroy families, and hemorrhage money. 

When we will wake-up and realize we can't have it both ways? We are living in a fairy tale if we believe using this type of language doesn't negatively affect our kids. 

There cannot be peace where there is fear.

There cannot be love where there is hate.

There cannot be acceptance when all people want is a cure.

We have failed our kids when awareness becomes enough. 

When one type of therapy becomes enough. 

When one view of autism becomes enough. 

When we silence those who live with the disability, and listen only to parents, or researchers, or teachers, because we don't believe, really believe, those affected have anything to say. 

When we write off people based on test scores. Verbal ability. Physical appearance. 

At the end of the day there are those who think only they know autism, and only their message needs to be shared. Only their therapy needs to be covered by insurance. Only their desire for a cure needs to be talked about in mainstream media, or their view of what awareness is needs to be funded. When autism is the Big Bad, the worse we make it sound, the better. 

Except when you don't see it that way. But then, who is there to support that view? 

I sound like a broken record, but I cannot say this enough. We need to be honest, really, truly honest with ourselves about what we are putting out there. What we are telling the world. What our message means for our children now, and as they get older. 

We also need to decide if the good any one organization does outweighs the bad. We have to ask ourselves, are we driven by our comfort zone, or the changes we want to see moving forward, even if things get sticky?

It's for everyone one of us to decide, individually. I think sometimes we just get stuck in what we know, and fail to look beyond that.

Do you have to agree with me? No. Do I hope all of you take a few minutes to think about what you believe, who you support, and why? Yes. Just like anything else in life, I want everyone to think independently, and decide their truth. Not based on popular opinion. Not based on any one blog. Just based on what feels right in their heart. 

I know taking time out to really think about what I believe has brought about serious change. It's never easy, but always worth it. 

Just like our kids.

Friday, November 15, 2013

The Hamburger

Last night I decided to take the kids out to dinner. The husband was out rock climbing with a friend, and I just didn't feel like cooking (do I ever?) Restaurants are not easy for K. She loves going out to eat, but waiting for food, or the differences in how dishes are prepared place to place, can make things tough. She usually ends up sprawled out on one side of the booth, or under the table. But, she likes going, so we go. B likes going because he doesn't think my grilled cheese sandwiches (wheat bread) are anywhere near as good as one from a restaurant (white bread and loads of butter.) Getting him to not swing from the chandeliers (haha, like we go to restaurants with chandeliers), is difficult, but did I mention how much I really hate to cook?

I let the kids choose the restaurant, picked the closest location, and off we went. After a mini-meltdown because someone forgot his toy in the car (thank goodness I got a front row parking space), we were seated, and everyone was happy (and, yes, we bring iPads out with us, because I am unapologetic in my love for them.)

While waiting for our food to come out, (K expects it as soon as she places her order, because why wouldn't the waitress have a magic machine that delivers it immediately?) I asked Katie how her field trip was that day. Her school had actually gone out to lunch (yes, two restaurant meals in one day. The horror.), and I wanted to hear how it went. She told me she ordered pasta with butter (as usual), her friend M ordered Mac n Cheese (I am not sure why I think that needs capitalization), and the other student with them ordered a "sandwich", which was gross (in her opinion.)

And then I heard about the egregious injustice carried out...no dessert. Not even the ice cream promised when you order a kid's meal. I explained to K that I'm sure they didn't allow dessert because not everyone ordered a kid's meal (some kids actually eat real food), and it wouldn't be fair if some got ice cream, and others did not. I'm sure you know how well that explanation went over.

What happened next, though, made me laugh. A lot.

As K got more and more worked up over being denied dessert, our food came. She promptly took her burger, and did this:

A burger ALWAYS needs a smiley face made from ketchup. Even if you're upset.
(Also, this is K's version of "photo-bombing".)

I had to laugh. My child, while telling me about the dessert debacle in a voice all the restaurant could hear, was at the same time drawing a smiley face on her food. Usually when I laugh at anything, K gets angry, but when I started to laugh yesterday? She started to laugh, too. She broke out of her frustration, and was able to calm down. The fact that she attempted to "photo-bomb" the picture proves that full-on meltdown mode had been averted.

*Wipes brow*

This is what I love. Even when she was quickly cycling up to a place from which there was potentially no return, she had to keep her routines. She had to draw that smiley face, because that's what you do when you have a hamburger. It doesn't matter if dessert-gate is making your world fall apart, the burger gets a smile. Period. Her need to do that broke the tension. It made me laugh, which (thankfully) made her laugh. Dinner continued, the kids got their ice cream (miracle of miracles), and no one was worse for the wear.

Now, I could view our trip as a really tough night out. I could focus on the fact that K spent most of dinner upset over what happened at lunch, and sprawled out on the booth, thisclose to a meltdown (or that B almost brought down the TV situated directly above his head.) Or I can consider last night a win, brought on by a hamburger with a smile.

I choose the latter.

(P.S. Even if smiley-faced-hamburger didn't happen, I would still consider last night a win because I got to spend time with my two favorite people, and nobody died (for reals). Meltdowns happen. Tough times happen. But I choose to focus on the good, because that's what I call living.)





Wednesday, November 13, 2013

Happiness Lives Here

I'm going to preface this by saying I am not looking for a debate. If Autism Speaks is your favorite charity, this probably isn't the blog post for you. If you have an open mind, welcome. Any comments attacking me or my readers will be removed. My blog, my rules :) 

I've written and deleted this post a few times since yesterday. There are so many thoughts swimming around in my head, and I've yet to find a cohesive way to write them all down. I am sure this post will showcase that, but I had to write it anyway.

I guess I'll just being with this:


I used to support Autism Speaks. When K was first diagnosed, I thought jumping on the Autism Speaks train was the next logical step. They were it when it came to autism. Or so I thought. There was a time I hated autism. Wished for a cure. Why? Because that's what I thought you were supposed to do. A truly happy life was out of reach, as long as autism was hanging around. It needed to be defeated, my daughter freed of its grasp. There was no other option.

If you've been reading my blog(s) for the past few years, you know firsthand the turnaround I've done when it comes to how I view autism. It's been a 180, for sure. Gradual at first, then quicker these past few months. I've probably left some heads spinning, as I've tried to find my footing while trying to "keep the peace" with those I've considered dear friends for years. Parents who now walk a very different path, but whose friendships I'd never want to lose. Life doesn't have to revolve around autism. Our relationships don't have to be defined by it. We are actual people, not just mothers. I know I will inevitably lose friends along the way, but I also know I've made a choice that's right for my family.

By now you've probably seen the op-ed piece written by one of the founders of Autism Speaks, Suzanne Wright (you can find it here.) I read it Monday night, after seeing a link on Twitter. I read it before any of yesterday's blogs posts, so my opinion isn't based on what someone else wrote. It's based on what I thought while laying in bed, hearing no one's voice but my own. I was so angry, and needed to vent, so I posted this on my personal Facebook page:


Of course, I know what happens when you post anything even slightly controversial on Facebook, but I did it anyway. Sometimes I get so caught up in not wanting to upset people, I keep my opinions to myself. That wasn't an option Monday night. I woke up Tuesday morning to find a plethora of blog posts about the piece. People who had been avid supporters of Autism Speaks were even coming out against them. It seemed to be the straw that broke the camel's back.

It made me happy, not being the only one who was incredibly offended by Suzanne Wright's words. Autism Speaks has had its fair share of fumbles, yet they never seem to care. They've asked what they can do better, yet never change. This was just the icing on the cake.

The piece proved that Autism Speaks doesn't take into account the opinions of those actually living with autism. Or the opinions of parents who are tired of their children being feared, or being used as the worst-case scenario for a pregnant mother. Who don't want to see their children blamed for divorces, or bankruptcies, or miserable lives. It's fear-mongering. Making autism into some Big Bad that rains down misery on the lives of everyone it touches.

*Warning, rant ahead*

Now, maybe you read the article and thought, well, that does describe my life pretty accurately. Maybe you want to tell me to shut up, or that I "just don't get it". Maybe your kids are older, and you hope puberty is hell for me, so I really know how bad it can get (K will be 10 in January, and we've been at this since she was 18 months old, so I'm not exactly "new" here.) Maybe you are where I was just a year or two ago, living in a constant state of sadness, in a life you never imagined, and one you cannot accept. I've been there. But, hey, maybe you just don't believe me. Maybe you know you have it worse, and nothing I write means anything to you, because you've already won this mommy-war (in that case, why do you read my blog?)

If that's how you feel, you are certainly entitled to your opinion, but this is probably where we should part ways. The truth is, there are very few people who truly know me and my family, and there are a lot of things I don't talk about in order to protect the privacy of my children. I know how hard life can be, but it's up to you whether or not you believe me. If you've been a longtime reader, you might remember the days when nothing was sacred, and I wrote about our darkest times (a couple blogs ago.) If you're new, you can only take me at my word. Even most (all) of my friends only know what I want them to know. So, yes, I get it, but I can't force anyone to believe that I do.

Autism is a spectrum. I would never discount the struggles many families face, because we've been through some mighty rough waters, ourselves. But, that's not the point. The point is how I want my kids to be viewed. How I want society to see their worth, and not think their mere existence is a burden no one should shoulder.

*End of rant*

I think we all have a choice to make, in how we live our lives. At the end of my life I don't want to look back with regret, thinking I wasted all those years stuck in a cycle of misery. I don't want to just exist, as Suzanne Wright put it. I want to live. I want my kids to live. I want them to experience this world, and so what if sometimes things don't go as well as planned? We move on.

A couple weeks ago we went to the circus. Before going, I guessed that K would probably hate it, and B would probably love it. I was wrong. K loved the circus, whereas B was ready to go almost as soon as we sat down. If I had made the decision to leave K at home, because I thought "I could never do that with her", she would have missed out on such a joyous experience! And I would have missed out on seeing it!

Get what I'm saying? Sure, there are things we try that don't work out, but that doesn't mean I just give up on living. That I do nothing, because I can't handle the "what if". I don't want to just exist. I don't want my kids to just exist. And I'm not OK with placing the blame on "autism" (i.e. my kids), because things aren't always easy. If I just existed, I would miss out wins like the circus, and I never want to be OK with that. We live typical lives, like we would if our kid didn't carry any diagnosis, because I refuse to let a diagnosis define us...chart our path in this life. There is no given, no matter what Autism Speaks says. And we can be happy and fulfilled, regardless of what they want people to think.

I don't curse the gods because my kids are on the spectrum. I don't define myself by my child's functioning label, or how much better or worse we have it than someone else. I just live. Like anyone else. I just happen to have autistic children. My life, the things we do, how we raise our kids, is not up for debate. It's not for anyone to scrutinize, or use to put me down. If it looks like we live charmed lives, so be it. I am not going to give up my children's privacy to prove that we know what hard is. What I want to show you is that even though we do go through hard times, there are always good times. Really, really good times, because we keep on living. Because that's what our kids deserve. Because we don't live in fear of failure, even if some giant organization thinks we should, because happiness can't possibly live alongside autism.

Now, I sincerely believe in the importance of insurance reform. I believe in helping families who struggle (not that Autism Speaks does this, mind you.) I want to find ways to mitigate the anxiety so many of our children struggle with, because they live in a world that doesn't always accommodate them. But, do I think we need to make our kids look like walking tragedies in order to illicit donations, change laws, or provide services?

No.

I also wholeheartedly believe it is a short trip from saying our kids are burdens who break families apart, to finding sympathy for those who murder or harm their children. If autism is a Big Bad, then our kids will be seen as a Big Bad, and nothing, nothing good will ever come from that.

I want Suzanne Write to know, I am not going to break. My children are not burdens, not part of an epidemic akin to cancer or AIDS, and not the worst things that could ever happen to me. They are the best things that ever happened to me, and I will fight until my dying breath to make sure everyone knows that. A breath taken at the end of a full life, because I chose happiness. I chose to live. I chose to accept my kids...period. Just as I choose not to support an organization who doesn't see the perfect little people I do, whom I love more and more each day, just the way they are.

Call me naive. Tell me I don't get it. Tell your friends about this idiot blogger you know who hates the greatest organization in the world. Go for it. I've heard it before, and I'll hear it again. But if you stand with me, then speak out. Be the change. Let everyone know autism doesn't sentence you to an unhappy life! That Autism Speaks doesn't speak for you.

I'll leave you with this, because I think it's the most important part: would you ever want your children reading Suzanne Wright's words? Would you ever want your children hearing how some people negatively talk about autism? Because they are who we need to think about...our kids. Even if you believe your child could never understand what is being said, I urge you to think again. There are many adult advocates who have proven you cannot judge a book by it's cover, or a person by the amount of language they seem to possess. Would you want them to read this piece? That is really the only question you need to be asking yourself. I hope your answer is no.










Thursday, November 7, 2013

An Orphan with Red Curls, and Time with My Girl.


I love the movie Annie. It was one of my favorites as a kid, right up there with The Wizard of Oz. Our copy was a VHS tape, recorded off the TV. I even remember some of the commercials. The other day when I was doing my daily Target run, I came across Annie in the $4.75 movie section. I was really excited because I hadn't seen it in years, and really wanted to share it with K.

Last spring K and I went to an autism friendly performance of Annie, but there's really nothing like the movie. I envisioned the two of us snuggled up on the couch, big bowl of popcorn perched precariously on her legs, singing along to the songs together.

Well, OK, I would do the singing, and she would ask me not to, but you get the point.

I'm not new here. I know how at home movies go with K. She actually does much better in the theater. Less distractions. Dark, quiet, room (sensory-friendly films are not sensory-friendly to K, because she needs quiet.) At home she sometimes watches a movie, and sometimes wanders around, occasionally coming back to it. She is a snuggler, but only for a certain amount of time before she needs out. Still, I couldn't help but imagine some Hallmark-like moment of sharing a favorite movie with my girl.

It started out like I imagined. Sorta. I made a bowl of popcorn, which ended up mostly on the cushions and floor. I sat on the couch, smushed into a corner, while K stretched out at some random angle. But, we were together, and she was a willing participant!

What I soon realized is that the DVD version of Annie is a lot longer than the "taped from television" version I grew up watching. In the first half of the movie, there were several songs I never even knew existed. And the first half of the movie probably lasted as long as the whole "edited for time allotted" version. Once K's popcorn was gone (and the kernels promptly spilled everywhere, because when does that not happen), she got squirmy. I could tell the movie wasn't holding her attention as it had held mine all those years ago. Eventually, after rolling onto the floor, she looked up at me and said she wanted to go upstairs. I know better than to force anything, so off she went.

I get stuck in this trap, often. Even though I've been around the block and back again, I seem to forget reality. I don't even think about it in the context of wanting something different, I just think about it in the context of how I was as a little girl, and projecting that on K. Autistic or not, it doesn't mean she will grow up the same way I did, or love the same things I did. She's her own person, and maybe Annie was just plain old boring to her.

What I love is K wanted to watch Annie with me. She got home from school and the first thing out of her mouth was a reminder that we had plans to watch it together. She happily sat down on the couch, and cued up the DVD player. We spent time bonding in our unique way.

K not making it through the whole movie doesn't take away from the fact that I really did get what I wanted in the end. I got to share a favorite movie with my daughter, snuggled on the couch together in a "K sorta way", and I did get to sing along while K gave me the eye. No, we didn't make it through the 12(?) hours of unedited Annie, but that doesn't matter. What matters is that we had that shared experience. Instead of getting upset that my almost 10 year old can't sit through a video, I immersed myself in the beauty that is spending time with my girl. Isn't that all that matters? Not how things happen, but that they happen. We got to spend time in each other's worlds, and that's better than any imagined Hallmark moment, any day of the week.


Wednesday, November 6, 2013

Selfish



I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

Monday, November 4, 2013

You're Missing Out...

When you have a child with autism, there is a part of you that is always waiting for the other shoe to drop. For years I sent K off to school, waiting for that phone call home. A note in her folder. An inevitable meltdown. I lived holding my breath, not able to relax because I was constantly bracing myself for the next "bad" thing. Autism hung over my head like a dark cloud, waiting to ruin...everything. 

I used to live like this. I do not anymore. 

This weekend I read two things that hit me right in the gut. One was a dad saying he could never enjoy the good days with his child, because there would inevitably be bad days right around the corner. Another was a mother saying that autism was her whole life, and not a minute went by where she wasn't completely consumed by it. 

Both made me sad. Made me cringe. Made me realize how hard it is to get away from that type of thinking. I feel lucky I found a way out, although my way out was not one I wish for other people. K was mistreated by people we trusted, and because of this mistreatment I couldn't help but change not only how I viewed my child, but autism as a whole. I hope others can find a way out before their children suffer, which is why I write what I do. I have to. 

I can't say, though, that I never enjoyed the good days. I think I jumped for joy on those days, relishing every second. I did always end a good day wondering when that other shoe would drop. What price we would pay the universe for the one day I didn't feel like we were circling the drain. But, holding onto those good times is what helped me survive. Allowed me to get up every morning. Kept me fighting for my child. You must always, always, hold onto those days. Live in them. Be in the moment. They can be our greatest anchor when times get tough. 

These days, we have more good times than bad. Mostly because of how I changed the way I look at K, the way I treat her, the way I view her life. It's amazing how changing yourself can affect your child. How when you accept them, really accept them, and stop viewing autism as the big bad, everything gets so much easier. Sure, your kid is still autistic, and there are still days that are so, so difficult (I am not denying that), but when you let go of trying to "fix" your kid, or of your own resentment, well, I can't explain the weight lifted from your shoulders. 

My life used to revolve around K's diagnosis. It really was at the forefront of my mind every second of every day. Our weeks were filled with therapy after therapy, trying to get K as close to normal as possible. That's the goal, normalcy. Or so we're told. I really can't think of any other neurological disorder where you are told you need to force your kid out of it. Where the only goal is for them to pass as typical, and if you don't somehow reach that goal, all is lost. Where it's OK to abuse your child with chemicals and pills. Where it's OK to restrain kids, and toss them into isolation rooms. Where making sure autistic people know something is terribly wrong with them, and that nothing they say, think, or do is right, is just part of "therapy". 

It seems unique to autism, just the pervasive hatred of the disorder itself. Hatred that spills over onto the kids (and adults), because how could it not? Hatred that allows murderers to be sympathized with, and people to be harmed, physically and emotionally. 

Before I took a good, hard look at what I was doing to my child, sure, my life was autism, and K suffered for it. I didn't listen to her as I dragged her literally kicking and screaming to speech. To social group after social group. When our home ABA person would come, and she'd barricade herself in her room. I thought her behavior meant I wasn't trying hard enough, when in reality her behavior meant I was trying too hard. I had a kid who just needed to be, to exist solely as she was, without being forced to be someone else. I missed getting to know my daughter during those years, because I was hell bent on fixing her. It's my biggest regret. 

So now, my life doesn't revolve around autism. My life revolves around my kids. I am no longer burdened with trying to fix them, because they don't need to be fixed. I don't worry about their differences. I don't sit online all day trying to find the latest and greatest therapy. Our afternoons are spent at home, spending time together, not in waiting rooms. I enjoy them for who they are, and give them space when they need it. I maneuver our lives so that they are comfortable, and I don't wish for any magic pill or treatment to cure them of themselves. I am sad I ever did. 

I no longer look at a good day as just the lead in to something bad. I just try not to put my children in situations that I know are hard for them. It's a process, learning the ins and outs of your child, their needs, but it's worth it. I no longer hold my breath, waiting for the next meltdown, because I try my hardest to make sure my kids don't feel the need to react that way. No, I am not perfect, like, at all, but our days are more peaceful because I've finally learned how to parent an autistic child. I have made mistakes along the way, I'm only human, but I have come a long way. 

When you look at autism as the devil, as something that has stolen your child, you are missing out on that child. On everything they do have to offer. The love they have to give. Life might not be what you imagined, but it still needs to be enjoyed. There are definitely things I wish I could cure for my kids: GI issues, Epilepsy, but I don't need to cure them from their unique neurology. I need to step back and let them be themselves, and make sure they know they are everything that is right in my life, not what is wrong. 




Thursday, October 24, 2013

Holding My Breath

Have you ever read blog posts, or heard stories, about cute little autistic children who are beloved by their classmates? Who are fully integrated, and have no problems at all because other children just flock to them? How they are teaching the world about diversity, and how every person who meets them just oozes love, respect, and acceptance?

Have you ever unfollowed a Facebook page, or Twitter account, because you couldn't take one.more.second of this shiny happy world you know nothing about?

Yeah, me too.

This week K started in a new social group. Now, I don't love social groups. I think autistic children are who they are, and trying to teach them to be different can be very detrimental. But, this group is all girls, and run by the K's counselor whom I do love.

And did I mention it's all girls?

K has been struggling lately with wanting friends, but unfortunately she's not one of the lucky few who acts as the Pied Piper of typical children. For the most part, other kids think she's weird, or excessively naughty, and just someone they don't want to be around.

So, when a spot opened up in "girl group", we decided to give it a chance. Especially because one of the girls is really into My Little Pony, and K has recently gotten into My Little Pony (some say obsession, I say she just likes ponies.) They even watch My Little Pony videos on YouTube, because I guess there are one or two ponies with disabilities (the girls can relate to the ponies, and hopefully it builds their own self-worth.)

At the end of group, K walked out and handed me a sheet of paper. It was a birthday invitation. My first thought was that we obviously couldn't attend. This was K's first day in the group, and getting an invitation was just a formality. It would be weird if we went, not knowing the girl, or the parents.

Of course, K was excited about the invitation. It's not like she gets them often. Not from people outside our circle of "family friends". And she didn't get at all why I thought we shouldn't go. At all. To her, this girl was a "friend", now. Clearly she should be at her birthday party.

So this morning I stepped out of my comfort zone, and emailed the dad. I told him K would love to come, but since the girls just met I wanted to make sure it was really OK. I'm guessing (hoping) these parents understand how getting a birthday invitation is akin to winning the lottery.

So here I sit, waiting on an email back. Feeling guilty that I even asked if it was OK for K to come, but also desperately wanting her to feel included. K will never be the cute autistic kid everyone flocks to, but maybe she will be someone a few other kids want at their birthday party, and that really is enough.

Monday, October 21, 2013

Functioning Labels

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Boys and girls, today we will discuss functioning labels.

I know, I know, you don't want yet another post about how inaccurate these labels are. You don't want to hear one more parent of a verbal kid try to make it seem like their life is similar to those whose kids can't speak. You don't want to listen to one more mother ramble on about how her kid isn't very high functioning, even those said kid is out of diapers/can feed him or herself/is mainstreamed/is reading at a12th grade level.

I totally get it. I really, really do. I have gone back and forth about this debate, because a part of me thinks functioning labels aren't all bad. Children who can't feed themselves, dress themselves, use the bathroom, get their needs across with words, score poorly on tests we've decided measure intelligence, probably aren't functioning at a level society considers high. While children who can dress themselves, and feed themselves, and use the toilet, and communicate verbally, probably aren't functioning at a level society considers low.

Because that's how we define these labels. By how an outsider views our children. We decide functioning labels based on how complete strangers see our kids, and that can be dangerous. A stranger might look at a non-verbal child, and feel lucky their children are "normal". A stranger might hear the sounds our kids make, and decide there isn't much going on upstairs. A stranger might see our children stim, or meltdown, or do anything else autistic, and decide our kids are a waste of resources. Space. Oxygen. Who will never amount to anything. Who will always be a burden on their families. Who will never bring joy to another living person. (Who then feel sympathy for parents who harm their kids, because low-functioning=not worth much. Not human. Now worthy of love.) I have even spoken to parents who have written off their own kids as low-functioning, and seem to think their children are empty vessels, and that is truly heart breaking.

On the other hand, a stranger might look at K, and decide she is high-functioning, because she can speak. And, well, because she can speak. That seems to be the deciding factor, since she still stims, and has meltdowns, and is in a private school for kids on the spectrum. She has no friends to speak of, not ones who seek her out for play dates, or sleepovers, or a trip to the mall. Not without my intervention (aka, begging for someone to please hang out with my child.) She hasn't been successful in soccer, or Brownies, or dance class. She has anxiety that can shut her down completely. Although, she can mostly dress herself, microwave Easy Mac, and does use the potty (though there are very important aspects of this we have yet to master.) There are things she can do on her own, and things she can't, but to that stranger on the street she would be deemed high-functioning. One of the kids who might go to college, get a job, start a family.

And maybe she will do those things, in her own way. Just as all kids on the spectrum do everything in their own time, and in their own way. Maybe she'll live with us forever, because there is honestly a good chance of that happening. My only expectation for either kid is happiness. Just finding some way to feel fulfilled and happy in this world. That's it.

When it comes down to it, there are individuals considered low-functioning, who might end up accomplishing a lot. Unfortunately, based on outward appearances, some would never suspect they were capable of things like a college degree, or even a job. Then there are kids like K, who people might automatically judge as high-functioning. However, they might always been in the most restrictive classroom environment, or not live up to the expectations a stranger would set for them. This is where functioning labels can fail us. They lower or raise expectations based on first glance, which doesn't help any of our kids in the long run (not that I am saying K won't do great things, I am just using this as an example. Whatever she does, it will be great!)

But, I get it. I get feeling the need to label your child. To use those labels when speaking to others. Feeling that people won't understand how difficult life can be without those words. But, are we labeling our children as a service to them, or are we doing it because we want the world to feel sympathy for us, as parents? What are our motives? And how do they affect the outcome for our kids? Are we holding them back, because we are so transfixed on a couple little words? Are we pushing too hard? Would taking labels away benefit our children?

I don't have all the answers. I know there are people who feel strongly both ways, and I'm not here to tell you which is correct. I just want to talk about the effects of labeling, and if it helps or hinders our children. Do we use them, or take them away, and at what cost?

For now, my kids are just autistic (well, I still say B has Aspergers, which is a whole other post, right?) How they function is subjective, and I don't want to put them in any box which might limit what people think they can do, or make them feel bad because they should be doing more. I think children need to be looked at individually when we set expectations, not just as part of a functioning label. But, as always, I don't speak for everyone.

What do you think?