10

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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.)

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.

Gifts

K's birthday is two weeks after Christmas. For any other kid, I am sure there would be a myriad of gifts Santa didn't bring to choose from.

Not so much with K.

I have barely finished patting myself on the back for figuring out things she'll actually use, and here I am thrown back into the lion's den.

So, I have decided that if one of something is good, two of something is even better.

One of the gifts K received was a Fijit. (Click on the link to see it in action)

She liked playing with it at the store, so I passed the idea on to a family member (yeah, that's another issue...coming up with gifts for everyone else to give her, too). I really had no idea if she'd actually play with it, but she loves it.

LOVES.IT.

Anything interactive is usually a go. If a toy doesn't do something, it's going to disappear into toy oblivion. Even the Barbie K got for Christmas is a bath toy that has a light up tail.

Anyway, the Fijit she has now is the purple one. Clearly she needs a friend, so for K's birthday she will be getting a pink one (or whichever one she chooses when she goes shopping with Grampa).

Heck, I could just have everyone buy her one, and we could "collect them all"!

Which, actually, is not a bad idea.

It's like buying the same shirt in five different colors. When you find something that fits well, and looks good, you might as well have one for each day of the week.

The same holds true when it comes to K and gifts. Sure, there are a million things *I* would love to buy for her, but I know she'll never use them. Another little thing you have to get over when your child has the big A.

But, seeing her happily playing with something makes it worthwhile. My husband knowing we didn't waste a ton of money on stuff that will be lost forever in the playroom...priceless.

Playing with "Willa"