Our Little Wanderers

I remember when K was close to 3, we were having a cookout at our house. Lots of people. People K didn't know. Lots of noise. An overwhelming situation. Her solution was to leave. I caught her walking up the driveway, thisclose to the street, just repeating over and over "go home, go home".

I have a niece, who at 3 would have known better than to walk into the street. Who would have been able to come up and tell someone she wanted to go inside. That she was upset. That she needed a break. Who would have answered when called. Who actually probably wouldn't be overwhelmed at a cookout.

But K, mostly non-verbal, autistic, wasn't able to do those things. Her only solution was to escape the problem. We live on a side street, where truck and teenagers drive double the speed limit on a regular basis. She didn't know not to go into the street. That it was dangerous. I don't even want to think about what could have happened.

When K was a little older she wandered off at the beach. The beach!! I can't convey to you the sheer terror I felt, running around, desperately trying to find my child. The never-ending ocean lay in front of me, and I didn't know where my child was. Thankfully, I found her, walking around on the sand. We immediately left, because I couldn't stay. I enrolled her in swimming lessons. I bought a life jacket.

Then there is B. He has Aspergers. Clearly very verbal. Yet, his teacher holds his hand when they go out for the bus, afraid he'll run off. He has no sense of danger. He, at almost 7, will still run into the street without thinking twice. When we go anywhere, he is prone to wander. Even those considered "high-functioning" are not immune to this.

It's not that I don't watch my kids. I am probably one of the most paranoid people you will ever meet, and I am hyper-vigilant. Sometimes, though, you entrust another to look after your child, and maybe they don't understand how eagle-eyed they have to be. Sometimes you want to go to the bathroom, make a sandwich for your child, or tend to a sibling.

Sometimes you have to sleep.

In the past couple weeks there have been two deaths related to autism and wandering. Two beautiful children lost, because they wandered off, and weren't found in time.

Mikaela Lynch  and  Owen Black were two children severely affected by autism. Non-verbal. They wandered and both drowned in nearby bodies of water, because, as I can attest, our kids are attracted to water. Regardless of place on the spectrum, so many kids feel comfort there. I know K is at home in the water. So is B. If they could live in the water, they would.

Mikaela and Owen are just two examples. These deaths occur far too often. Law enforcement isn't trained on autism, to know to look in the water first. Not everyone understands that those with profound autism won't answer when called. Have no concept of danger. Won't just return home. And that no matter how much like Fort Knox a home is, kids, all kids, can be little escape artists, gone in an instant.

We need to educate people about autism and wandering, not judge. Even I can't assume to know what it's like to live with a child so severely affected. But, I know these parents love their children more than anything. Do all they can to protect them, and keep them safe. Sometimes, no matter what, these children elope, and we need to take steps to make sure we find them before the unthinkable happens.

Below are links to educate and help.

National Autism Association-Big Red Safety Box

Tattoos with a Purpose

AWAARE-Working to prevent wandering and deaths, within the autism community. 

All my love is with these two families, as they grieve the loss of their precious children.

Bittersweet

My Facebook status from Thursday night:

We were at the town carnival tonight, and K saw a girl from her mainstream, 3rd grade class (where she started out the year). They hung out, talked, and went on all the rides together. And my heart broke a little, bc I wish she could be successful in the mainstream. I wish she could be in her old class, with kids who truly did love her. 

So close, yet so far...

Thursday night we took the kids to the town carnival. They had been setting it up for a week, and B especially couldn't wait to go (as in it was all he could talk about at home and school). It was wristband night, meaning for $15 the kids could ride as many rides, as many times as they wanted, which saved us a ton of money (I loathe carnival tickets).

We weren't there very long when a girl from K's original 3rd grade class saw her, and came running over. She was so excited to see K. This was the little girl who would always be holding K's hand, or trying to involve her. You know, that "mother hen" you always hear about. She would annoy K at times, but I was glad there was someone pushing her "in" to the group.

I felt a little nostalgic for the good ol' days (that really weren't so "good"), but it wasn't bad. I was glad K got to say hi to an old friend.

A while later, while on the swings, K met up with another girl from that same class. The little girl sat next to K, and the whole time the swings were swirling around, they talked. I don't know about what. I think some of it was about where K went to school now. I saw a lot of gesturing and smiling. It made my heart happy that there were kids who truly missed my girl, since this year was the year some had started to not be so accepting.

Once the swing ride ended, they stayed together. For the rest of our time there, they rode all the rides side by side, and had a great time. I followed behind, watching. Giving my girl space to just be a 9yo kid with a friend. Occasionally she'd walk over and snuggle into me, then run off again, happy and content.

It was awesome that K had such a "typical" experience at the carnival. Going on rides with another girl her age. Being more independent. Just being a kid. Except, my heart was breaking a bit. I had to hold back tears at times, even. Ridiculous, right?

The thing is, it made me sad that K couldn't be in that class with that little girl, anymore. That as great as the night was going, school never went that well. It was easy to forget, for a second, just how bad it was, wondering why it couldn't work out. But, oh, how it couldn't work out.

And I just wish, with all of my being, it could. I wish she could see these girls everyday. Ride the bus to school. Be in the regular 3rd grade class. I wish that inclusion had worked for my child. Sometimes it's so hard to reconcile the 9yo I saw last night, with the girl who is now at a private, special education school. For whom the mainstream was an absolute nightmare.

Hanging out 1:1 at a carnival is fine. Unfortunately, life isn't about hanging out 1:1 with a friend, doing something fun, all the time. I had to remind myself of the context, and not fool myself into believing maybe things weren't as bad as they were, because they were. Even the school admitted to that. And they'd be just as bad again, if we dared attempt inclusion (which, no).

I felt so much joy last night, watching K run around, laughing, smiling, growing up before my eyes. But, I also felt that sting of knowing it was just for the night, and tomorrow we would be back to reality. That little girl would go back to 3rd grade at our neighborhood elementary, and K would take an hour and a half van ride to her own school.

So close, and yet so far away. Story of K's life. But, I'll hold onto the positives, and hope they happen again.

Soon.

K (right), with her friend. 

A Bit of a Breakdown

In all honesty, I am constantly living thisclose to some kind of nervous breakdown. I don't handle stress and anxiety well. Like, at all. I never have. I cope, but there's always something bubbling right under the surface.

Yesterday I blogged about how much K loves her new school. Like, really, truly loves. More than any of her other placements. She talks about the kids there. She asked a little boy if he would be her friend, yesterday. She excitedly tells me about her day. I mean, it's only week one, but how I experience her school day is already so different. She's gone from hating school, fighting us about getting on the van, telling me nothing about her day, and saying no one likes her, to telling me a lot, happily getting up at the crack of dawn to go to school, and talking about friends.

I am insanely happy that things are going so well.

But, I'm also insanely scared it will all be taken away.

Technically, K is only at this school on a 45 day placement. A 45 day placement is one where they evaluate your child, and let you know what kind of setting would be best. Sometimes the child just stays at the school where the 45 day took place, and sometimes they go elsewhere. There is no guarantee, however, that K would be able to stay where she is now. We could have a fantastic 45 days, and then have the rug pulled out from under us. We could be forced to send her back to our home district, or a different public or private school.

Unfortunately, as with most school districts, money is tight, and private, special education day schools aren't cheap. Of course, my daughter has already been through two completely unacceptable placements at this point, and I, as her mom, feel she should stay where she's happy. I do not sign the checks, though.

So, while thinking about how great it is to finally have K somewhere that's a good fit, I suddenly got really sad. We're not done with this fight. We need a signed IEP placing her somewhere permanently. We don't have that right now. Come the end of July, everything will be up in the air, and I really have no clue how it will go. I don't know if they will allow K to stay at her current school, or if it will be another fight. It's why a 45 day placement always made me nervous...what if she falls in love with the school, and can't stay? How do I explain that to a child who has told me there will never be a school for her? That no one will ever understand her? That, finally, she's found a place where she really belongs, and it's being taken away?

It makes me sick to think about.

I should revel in the fact that she's so happy right now, in this moment, but I'm a planner, and I think long term. It's great that K is so happy right now, but what about September? Will she be happy then, or will we be be back to square one?

Like I said, until we have a signed IEP with a permanent placement, this mom will be sitting on pins and needles. I just pray to the gods that K ends up in the right place. The kid has been through too much in her life, when it comes to school, and she deserves to be where she's happy.

"I Love My New School!"

K started at her new school this past Monday. Admittedly, I was nervous. Sure, I knew in my head this school was a good fit, but you never really know until your child is there. I am worst case type of person, so I just had visions of giant meltdowns swirling about my head all day. It's just my Yankee pessimism, what can I say.

I'm used to K getting home from school and being in a mood. Wanting to be alone. Hating life. On Monday, none of that happened. Instead I just heard how "awesome" her day was, and how much she loved her new school.

Loved. 

My child, who can find the bad in a candy store, had nothing negative to say about her new school. At all. Not about the kids. Not about the teachers, or the work. Nothing.

I know that this might be the honeymoon period, but I also think she's finally somewhere she feels comfortable. Our advocate described this school as a "big hug", and she was right. I think the people there know how to educate a child like K, and I think that makes a huge difference.

I am excited to see how she continues to do at this school. Of course, I'm still a tad anxious about the whole thing, just because we are coming off two inappropriate placements that didn't end well, but I really do have high hopes.

Hope that K has finally found the place where she belongs.

Taking a Compliment

Why is it so difficult for us, as special needs parents, to take a compliment? I don't mean a compliment about ourselves, I mean those given to our kids.

I see it time and again. Someone says how happy they are for a child's progress, or what great strides are being made, and instead of those words just being accepted, they cause some to get defensive. As though saying how well a child is doing is somehow taking away whatever disability they have. Or that it questions how severe it is, or if it even exists. As though saying, yes, my child has made huge leaps lately, is admitting that maybe nothing was ever wrong.

I admit, I have done this myself. Especially when it comes to the school. I'm always afraid we're one compliment away from services being taken away. Oh, my child had a great day? Crap. Maybe they'll say she no longer needs XYZ. Oh, she's made huge strides since that last round of testing? Double crap. Maybe they'll try to take away the IEP!

It never happens, of course. Our kids make progress relative to themselves, and progress doesn't equal cure. It just equals progress. We should be able to agree when people say how well our kids are doing, without bringing up the difficult times. Without referencing prior test results. Without going on a mission to prove just how disabled they really are.

People telling us when our kids are doing great isn't them saying the disability was never there, or there wasn't a time when things were tough. I've complimented the progress of other children, and then felt bad because a parent got defensive. As though I, of all people, would ever challenge a diagnosis, or regression, or anything else. Saying how well a child is doing isn't saying they are typical. It isn't saying all their symptoms have suddenly disappeared, and they no longer struggle.

I think part of it is we live in a world where people do question whether or not we are just bad parents. If things like Autism, ADHD, and mental illness really exist, or if we have just somehow failed at raising our kids. I think that's why sometimes we tend to focus on the hard parts of life, because we feel we need to constantly prove that the disability is there.

The moral of the story is, if someone tells you your child is kicking ass, or doing awesome, or making progress in leaps and bounds, just smile and say, I know! Or, I'm so glad you noticed! They aren't questioning you, and even if they are, it doesn't mean we can't celebrate our children. They deserve to be celebrated for all their hard work, and that should be the focus. The good. Always the good.