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.


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?

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.)