Rookie Mistake

Last week I took the kids to an indoor play space. They were having "Carnival Days", which meant the gymnastics side of the facility was open, along with the regular play area. Usually I avoid taking K to these places, but since the gym has a giant foam pit, which she loves, I figured we'd be OK. And B, well he'd live at these play spaces if he could.

For the most part, we had a great time. K trampolined and foam pitted it up, and B ran around with his little cousin, E. It was busy, but not overly crowded, and I was glad the kids had somewhere other than the house to release their energy.

Because it was Carnival Days, they  had different activities and games for the kids. Most of the stuff I knew wouldn't interest my kids, but the one thing I was looking forward to was the make your own sundaes they advertised. That is right up their ally.

Unfortunately, the thing I figured would be the best part of the day, was the thing that shot us straight to...well...you know...

You see, when you say "make your own sundaes", there are certain expectations. Like, you actually get to make a sundae. Not have an employee just bring out trays of half melted ice cream, and offer a choice of non-sundae toppings. Like Sour Patch Kids, and Mike and Ike's.

And I knew. I knew when I saw the whole set up, this wouldn't be good. B, he was fine. He'll eat any candy you put in front of him. My niece, she was fine. She was just happy to get ice cream at all. K? K had her own ideas about make "your own sundae", and Sour Patch kids on top of melted ice cream didn't cut it.

It's not that she's ungrateful. It's just that after waiting in a long line (which always=anxiety), and then discovering it wasn't what she expected (heck, it wasn't even what I expected), she couldn't handle it.

I sent her back to our table while I waited for B. I was trying to remove her from the sundae area, knowing sending her back alone was not a good idea, but I didn't have any other options. When we got back to the table, a minute after she did, I found her covered in ice cream.

She had punched her sundae and thrown her spoon across the room.

She was done. Yelling...crying...etc...

And, of course, every eye was on us. The woman at the table next to us actually made faces. It's one thing to stare, but to actively make faces? That is a whole other level. That is her really wanting to know how disgusted she is with my kid. It's mean.

And here is where I make a giant mistake.

I didn't leave right away.

B and his cousin were enjoying their ice cream, and I figured I could placate K with her iPad for a while. It almost seemed to work, but, internally, she was escalating. It had gotten busier and louder, and eventually, it came to a head. She announced she was leaving, it was too loud, and took off.

I had to quickly gather our stuff, and run. At these play spaces everyone gets a wrist band, so they know which kid belongs with which parent. You can't leave until they cut your wrist band off, and they see the parents and kids together.

K just wanted out. She tried to open the door, and started kicking it when she couldn't leave. We finally got our bracelets off, and she took off, again, slamming into a trash can on the way. This caused an employee to start yelling at K, stare at me, and make snarky little comments. It caused the other families sitting in that area, getting on their shoes, to stare as well. I wish I could say it doesn't bother me, but it does.

We ended up getting our shoes on in the parking lot. I wanted to cry.  I was angry at the employee for making things worse. When she yelled at K, it just caused her to bolt again. I was angry at people for staring at us. I was angry for caring they had. I was upset that I couldn't help K, and knew the rest of the day was lost to this. I knew the anxiety and anger K felt was going to stay with us all night.

Mostly, though, I was angry at myself for not pulling the rip cord earlier. The day had been going really well up until that point. I got cocky. I thought things would be OK. Or, I talked myself into thinking things would be OK. I know better.

K will be 9 in two weeks. I should know better. 

It can be a fine line between hoping for the best, and knowing when to jump ship. At least for me. Maybe 2013 will be the year I master these things.

One can only hope.

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! 

Determined

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

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

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

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

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

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

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

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

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

Just.Happy.

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

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

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

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

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

For that, I am grateful.

There is Love...

K and B do not get along. It goes beyond sibling rivalry. The challenges they both face make it more difficult to be flexible, to control their emotions, to walk away when they get upset.

Sometimes I feel that I am a full time referee.

But, there are moments of magic, where they play so well together, it makes up for the times when they...don't.

Or when B shows great compassion towards K when she's having a particular difficult time, even if she doesn't want to accept it.

Or when K tells B that she loves him out of the blue, and they give each other a genuine hug.

I try to focus on those times. Remember they really do love one another, even when their actions speak the exact opposite.

Then, last night, K came up to me and said she wanted to buy B a Christmas gift. Sure, it was two days before Christmas, and the last thing I want to do is go anywhere near a store, but none of that mattered.

She asked, on her own. We hadn't talked about them choosing gifts for one another. I hadn't come up with the idea myself (as I sometimes want to when I hear of other siblings doing the same). It was all her. She thought about her brother, without being prompted, and wanted to do something for him.

Because, regardless of what happens, there is love.

Even when our kids struggle the most, I believe, truly, truly believe, we are a family who has deep love for one another. Between the children, it might not always show, but it's there. An unbreakable bond.

And that's the only Christmas gift I need.

credit

Sit Down In My Thinking Chair...

Recently, I was told that allowing my daughter to watch shows that aren't considered "age appropriate" contribute to her falling more and more behind her peers.

It wasn't said in an offensive way. It was very matter-of-fact. And it's not something I can deny.

Allowing K to watch endless episodes of Blues Clues, Diego, Wonderpets, does not help her find common ground with other girls her age. She does watch some age-appropriate shows on Netflix, but all they serve to do is give her lines (and attitudes) to script, so I actually prefer the "baby" shows.

Age-appropriateness is a struggle for many parents of children on the spectrum. I know there are some who don't believe in allowing their children to continue to play with, or watch, things that they should have been set aside years ago. I know therapists who feel this way, too.

But, does eliminating these things really cause children to suddenly catch up with their peers? If it did, I suppose we wouldn't be dealing with Autism, would we?

If I were to forbid K from watching Blues Clues, or playing with a "Little People" toy meant for a toddler (instead of, well, I don't really know what girls her age play with), it would only make her unhappy. It would definitely cause her already fragile self-esteem to plummet more. It would probably make her to withdraw, and thereby dismiss any ability to be social, at all.

We need to accept our children where they are, and realize the things we might not see as appropriate, are what comfort them in an ever changing, always confusing, world.

Even if it's this kid.(sproutonline.com)

You Might Know Me...

This isn't my first foray into blogging. I have written on one blog or another since my daughter was an infant. She turns 9 next month. Writing is cathartic for me. It's how I stay sane. Having children with special needs can make for a lonely world, and I have made fantastic friends along the way. Fantastic friends I met online. Through blogging, and other social media.

Due to some things going on in my life, I have decided to begin a whole new blog, and to keep it as anonymous as possible.

Some of you might know me. I ask you please refrain from using my children's real names, or other identifying information, in the comments. I ask if you share a blog I write somewhere, you do the same.

Why am I (somewhat, kinda, sorta) anonymous?

Because by having a blog you are putting a lot of things out into the world, and even though you might not think people care, they do. And, trust me, the reaction isn't always pretty. My new blog won't delve into subject matter that might come back to haunt me, but deal with our life, as a family, within our family.

I want to be authentic as possible, while staying safe out here in the real world.

But, I'm glad to be back, continuing to share our journey.