Wednesday, February 27, 2013

Are We Allowed?

I struggle with our family belonging, within the Autism community. I look at K, and wonder how she can possibly have the same diagnosis as those profoundly affected? How can I look to those who struggle so desparately, and say we are on the same team?

I recently took K to an Autism friendly production of Annie. It was my favorite musical (and movie) as a child. I was so excited to share it with my girl, in a place where she could be herself, without judgement. If she bounced in her seat, needed a beak, couldn't keep quiet, it would be OK. A place where I didn't have to feel guilty, or like all eyes were on us.

Except, I did feel guilty. A large majority of the people there were those who live with severe Autism. I looked at my girl and felt like a fraud. I felt ridiculous for even purchasing tickets, and maybe taking seats from those who needed them more.

To be honest, there are times I struggle with even telling people K is on the spectrum. We have testing that proves it, from school and outside clinics. She faces very real obstacles on a daily basis, and there definite struggles in our lives. She isn't even able to be mainstreamed at this point. But, still, she speaks, she interacts. She is high-functioning by the standards set by most, and there are those who have spoken out against our place within the community.  Who have told me as much. That is when the guilt sets in.

This guilt. This feeling that we don't belong, it makes me wary of sharing too much. There are a select few with whom I am completely honest, but for the most part my days are filled trying to find silver linings.  Because, we are lucky. At least, that's what I'm told. That our struggles, no matter how I percieve them, will never compare to those of others. That my fears, worries, anxieties, they all pale in comparison. Because, there is always a comparison.

I didn't choose where my daughter fell on the spectrum. There was nothing magical that took her from being a non-verbal toddler, to the higher-functiong child she is today. It's just how things worked out. Does it make us any less part of this community?

That is the million dollar question.

Are we not allowed to share the difficult times because there will always be someone else who has it worse?

I want to say that yes, of course we are allowed. But, I don't know if I believe that myself.

And that can make life a very lonely place. Especially for my girl, because there are those who refuse her entrance on either side. Not typical enough, yet not Autistic enough.

I would love for there to be acceptance within the Autism community. For it not to be a series of one-ups, or who has it better (or worse). To be able to take K to an Autism friendly play, without feeling like we don't belong. That we are offensive in our presence, because there are those who struggle more.

And that maybe it's OK to not always look for that silver lining, because sometimes things just suck, and it's OK to feel that, even though, yes, there are those who will alwas have it worse.

We should all be allowed to live honestly, without judgement. Getting to that place is the challenge, at least for me. All I want is for my child to belong somewhere. She deserves that.

Friday, February 22, 2013

Defcon 5

It's Friday. School vacation week is winding down, but things here are winding up. I saw it coming yesterday. K was very agitated. Easily upset. Frustrated over everything. The anxiety was taking over. Taking my girl away.

As much as she isn't a fan of school, she needs that routine. No matter how hard we try, we just can't duplicate it at home. It just doesn't happen. Especially with three other people, with three different schedules, and three different sets of needs. I tried to plan things that K would enjoy. I made sure we alwasy had the iPod and iPad. We had back-up plans. Exit strategies. I was on high alert.

But, none of it really matters. I can't make everything OK. I can't immeidately remove her from every not-so-great sitution. This is reality, and reality is anything but predictable.

I have been browsing this site, lately. It's something that has been mentioned to me a few times, and it's a program we'd like to see used in Katie's educational setting. Is it the answer we've been looking for? Will it be the thing that finally settles my child's world?

I don't know. But I do know it has to be better than what we are all doing now.

A 9 year old shouldn't be depressed.

Filled with anxiety.

Feeling that everything she does is wrong, and that no one likes her.

She shouldn't feel like the world is spinning out of her control.

The future scares me, if we keep going on this path.

We have an IEP meeting next Friday. It's make or break. It's all come down to this one meeting.

I am hoping that when we exit the conference room, we'll be on a path where Defcon 5 is a thing of the past. Where I am not typing from my bedroom because I am "hiding out" with my girl, who can't handle much of anything at the moment.

My kids are my world. I will go to the ends of the earth for them. I wish I could share everything, but, for now, that's just not possible.

I hope that this time next week, I am bringing you some better news.

Fingers crossed.

Wednesday, February 6, 2013

You Gotta Keep 'Em Separated

I know I've been a total blog slacker. A lot of things have been going on, but I am not at liberty to talk about them publicly. At least, not yet. You know, since whenever I write anything on any blog, I am under the scrutiny of whomever thinks it's OK to run to the school with printed out pages, as though I'm writing a new edition of Mein Kampf. 

But, I digress...

Today I actually have something important to say. It's something I've probably written about before, but a posting on an online message board compelled me to talk about it again.

So, simply stated,

What happens at school needs to stay at school, and what happens at home needs to stay at home.

Example: Your child's behavior is especially challenging at home. You speak to the school and decide that how your child behaves at home dictates whether or not he earns stickers on his chart at school.


(Hmmm, was that too blunt?)

The consequences a child faces due to behavior at home, must be kept at home. You can do your own sticker chart. Have him earn things for making good choices. But it has to only be done at home. I am not sure how often this type of thing happens, but it was brought up to me once, and I declined. I didn't want to blur the lines. I didn't want to confuse my child, as to why she was earning/not earning at school for things that didn't happen there. It's just too much.

This probably happens less than the next scenario, though. Punishing a child at home for something that happened at school. (Side bar: I don't like the word "punish". Our kids should have the opportunity to earn, not have things taken away. Positive discipline is key with Autism).

My daughter has a lot of behaviors at school, but they take care of the consequences for them there. Home has to to be a safe place. It has to be a place where she can come home after a long day, and escape. School is so hard for our kids. There is so much going on, and it's an overwhelming place. They work incredibly hard just to make it through the day, and sometimes things don't go perfectly. The school has a plan. They take care of it. My children have sticker charts, and opportunities to earn preferred activities. When things go very wrong, there is a plan for that, too.

What my children don't need is the expectation that once they get home, to the place where they should feel the most comfortable, I'll be waiting, angry. Ready to take something way. To yell. To make them feel worse. Nor do I think it's a good idea to have a child earn something based on behavior at school.  Again, those line shouldn't be blurred.

Also, our kids aren't thinking about home when they are at school. They aren't saying to themselves, well, mom told me if I was really good today, I could go pick out that new toy. They are present in school, thinking about school, and we shouldn't add to that worries about earning/not earning at home. Talk about overload. Sometimes, I think parents expect more from their kids than they would themselves. We stress ourselves out trying to think about 100 things at a time, do we really want the same for our children? Our children who already have a hard enough time navigating the world?

Both of my kids have experienced bad days at school. Like, really bad days. But, once they come home, they know everything will be OK. They know I am there to help, to talk with, but never to make them feel worse. I never want them feeling scared of coming home. This will always be their safe haven. 

I know a lot of people don't agree with me on this. I know a lot of parents don't make this separation. Just ask yourselves this: if you don't separate them, where is your child's safe place? Where can they relax and decompress? Where can they release some of that anxiety and worry, and just be? Try to imagine the feeling of chaos when nowhere is safe. Please don't do that to your child.


Just take a moment to think about it. That's all I ask.

*Steps off soapbox*