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...

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. 

Holiday Lists?

credit

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.)

Christmas, In Pictures

Y'all get this, right? 

I don't care how old she is, Gymnastics Dora brought my child pure joy. 

The much coveted remote control shark. 

Robots in disguise. (He literally takes them everywhere). 

Seriously. This really happened.

A merry Christmas it was. I hope the same for you!