Thursday, October 24, 2013

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.

Monday, October 21, 2013

Functioning Labels

Boys and girls, today we will discuss functioning labels.

I know, I know, you don't want yet another post about how inaccurate these labels are. You don't want to hear one more parent of a verbal kid try to make it seem like their life is similar to those whose kids can't speak. You don't want to listen to one more mother ramble on about how her kid isn't very high functioning, even those said kid is out of diapers/can feed him or herself/is mainstreamed/is reading at a12th grade level.

I totally get it. I really, really do. I have gone back and forth about this debate, because a part of me thinks functioning labels aren't all bad. Children who can't feed themselves, dress themselves, use the bathroom, get their needs across with words, score poorly on tests we've decided measure intelligence, probably aren't functioning at a level society considers high. While children who can dress themselves, and feed themselves, and use the toilet, and communicate verbally, probably aren't functioning at a level society considers low.

Because that's how we define these labels. By how an outsider views our children. We decide functioning labels based on how complete strangers see our kids, and that can be dangerous. A stranger might look at a non-verbal child, and feel lucky their children are "normal". A stranger might hear the sounds our kids make, and decide there isn't much going on upstairs. A stranger might see our children stim, or meltdown, or do anything else autistic, and decide our kids are a waste of resources. Space. Oxygen. Who will never amount to anything. Who will always be a burden on their families. Who will never bring joy to another living person. (Who then feel sympathy for parents who harm their kids, because low-functioning=not worth much. Not human. Now worthy of love.) I have even spoken to parents who have written off their own kids as low-functioning, and seem to think their children are empty vessels, and that is truly heart breaking.

On the other hand, a stranger might look at K, and decide she is high-functioning, because she can speak. And, well, because she can speak. That seems to be the deciding factor, since she still stims, and has meltdowns, and is in a private school for kids on the spectrum. She has no friends to speak of, not ones who seek her out for play dates, or sleepovers, or a trip to the mall. Not without my intervention (aka, begging for someone to please hang out with my child.) She hasn't been successful in soccer, or Brownies, or dance class. She has anxiety that can shut her down completely. Although, she can mostly dress herself, microwave Easy Mac, and does use the potty (though there are very important aspects of this we have yet to master.) There are things she can do on her own, and things she can't, but to that stranger on the street she would be deemed high-functioning. One of the kids who might go to college, get a job, start a family.

And maybe she will do those things, in her own way. Just as all kids on the spectrum do everything in their own time, and in their own way. Maybe she'll live with us forever, because there is honestly a good chance of that happening. My only expectation for either kid is happiness. Just finding some way to feel fulfilled and happy in this world. That's it.

When it comes down to it, there are individuals considered low-functioning, who might end up accomplishing a lot. Unfortunately, based on outward appearances, some would never suspect they were capable of things like a college degree, or even a job. Then there are kids like K, who people might automatically judge as high-functioning. However, they might always been in the most restrictive classroom environment, or not live up to the expectations a stranger would set for them. This is where functioning labels can fail us. They lower or raise expectations based on first glance, which doesn't help any of our kids in the long run (not that I am saying K won't do great things, I am just using this as an example. Whatever she does, it will be great!)

But, I get it. I get feeling the need to label your child. To use those labels when speaking to others. Feeling that people won't understand how difficult life can be without those words. But, are we labeling our children as a service to them, or are we doing it because we want the world to feel sympathy for us, as parents? What are our motives? And how do they affect the outcome for our kids? Are we holding them back, because we are so transfixed on a couple little words? Are we pushing too hard? Would taking labels away benefit our children?

I don't have all the answers. I know there are people who feel strongly both ways, and I'm not here to tell you which is correct. I just want to talk about the effects of labeling, and if it helps or hinders our children. Do we use them, or take them away, and at what cost?

For now, my kids are just autistic (well, I still say B has Aspergers, which is a whole other post, right?) How they function is subjective, and I don't want to put them in any box which might limit what people think they can do, or make them feel bad because they should be doing more. I think children need to be looked at individually when we set expectations, not just as part of a functioning label. But, as always, I don't speak for everyone.

What do you think?

Saturday, October 19, 2013

With Them, I am Truly Happy.

I read a blog post recently that rubbed me the wrong way. Maybe it was just the way I read it, since everyone else seemed to love it. It made me angry, though. And sad. Sad for the child on the other end of the blog.

If there's one thing I want people to know, it's that they should never, ever feel bad for me. My children are not a constant source of pain. Their mere existence doesn't make life hard. I don't want to switch lives with someone else, just to escape raising children with special needs. Being around them doesn't drain me of energy, making it hard to breathe.

Life is hard for everyone. Not just those whose children have special needs. Everyone. What we all search for are the good things in life that bring us joy. That fill our hearts. That make us look forward to waking up everyday. For me, I get all those things from my kids.

When I look at my kids, I don't see their list of diagnosis. I don't them as people making my life hard. I don't blame them for any anxiety or pain I ever feel. I see them as pure joy. As unconditional love. As the reason I get out of bed every morning. Sure, life isn't perfect, and we have hard days just like anyone else, but I never feel the need to escape them. They aren't parasites sucking away my happiness. They are my happiness.


People always say that parents of children with special needs need to take time away. Recharge their batteries. Step away from their kids, so that they can come back refreshed, and ready to handle anything thrown their way. Well, I refuse to believe that is the answer. Spending time with my kids, that is what recharges my batteries. That's what gives me the energy to fight for them, and make sure their lives are as full as possible.

Sure, I go out with friends, and a date night here and there is always nice, but I don't do those things to get away. I do them to reconnect with the people in my life, because those relationships are important. Not as a way to escape my life. Definitely not as a way to escape my kids.

I think we need to be careful with our words, because sometimes we come off as blaming our kids for all our troubles. Sometimes the only message we convey is that everything is hard, or that our children have beaten us down. That makes people thank their lucky stars they don't walk in our shoes, and that's not the message I want to send. Not to the general public, and especially not to my kids. I'm sure I sound ridiculously self-righteous, but I'm OK with that.

Maybe some do blame their children, and I'm sure there are parents who would trade places with someone else. But that's not me, and I wanted to make sure everyone knows that.

They give me strength, and I would follow them anywhere. 

Friday, October 18, 2013

Choosing to Medicate. Also? Words Hurt.

For as long as I can remember, the biggest challenge B has faced is his impulse control. Or, lack thereof. He'll just walk by someone or something, and need to hit or touch. He still runs out of buildings without me, and across busy streets and parking lots. The other day we momentarily lost him at an amusement park because he decided he wanted to go on a specific ride, and just took off running into the crowd. I have a scorch mark on my counter from when he wanted to see if a bottle cleaning brush would melt over a candle flame (while I was in the bathroom for 2 minutes, and he was four.)

In our meetings with neurologists and developmental peds, there has always been talk about medication, but until now it was never something I wanted to pursue. He wasn't really being affected by his own issues (feeling badly about himself, or doing poorly in school), so we went the therapy route, instead. We talked about strategies, and implemented tons of sensory input, in case that was the root of the problem. We figured as he got older, he would naturally mature out of some behaviors. Also, because B is a small kid, having him take medication known for zapping people's appetites wasn't something we wanted to do. The child barely eats as it is. 

But, since his seizures began, things have gotten a lot worse. He's like a pinball. That's the best way I can describe the change in behavior. He is unable to regulate at all, and has started getting in trouble at school. A couple days ago we were at McDonald's, and B walked by a little kid and bopped a toy out of his hand. He didn't even seem to notice he did it, and immediately gave the toy back. That wasn't good enough for the child's mother, though, who laid into B, telling him he was a bully, and why would he be so mean to her son? 

B just stood there, like a deer in headlights. I could see the tears welling up in his eyes, and the red shade of embarrassment creeping over his face. It was all I could do not to start screaming back at this woman, but I knew it would get me nowhere (sometimes you can just tell when it's not worth it to even attempt a conversation), so we gathered our things and left. 

The look on B's face when this happened made me realize we need to try something else. I refuse to allow his self-esteem to take a blow, because the electrical activity in his brain is making him more impulsive. I refuse to allow his school experience to go downhill. I refuse to allow people to judge him as a bully, or bad kid. I never again want to see that look of sadness and shame on my child's face.

The fact is, we aren't new to medications. K has been on a few, trying to mitigate her constant anxiety, so it isn't like we are against them. We have always tried other things before turning to meds, but some things just can't be helped any other way. B has ADHD tendencies, anyway, and the onset of his seizures really made them worse. We were hoping once his seizure med built up in his system, some of the side effects of his seizures would ease up, but that hasn't happened. I've also learned recently that a lot of kids with Epilepsy display the same type of behaviors as B, and medication can really help. 

So today we are meeting with the developmental ped, and asking for a prescription. I once had a doctor tell me that you should never medicate your child unless their issues are affecting them. Not if they are affecting you as a parent. Not if they are affecting a teacher. Only if they are affecting the child, which up until this point they weren't. I have really lived by those words, and feel we've gotten to the point where B is being affected, and where he's starting to feel bad about himself. 

So here we are. 

Sure, there's a part of me that wishes we could find a different way to help B, but we've tried everything else. And if this truly is being made worse by the seizure activity in his brain, then all the OT in the world won't make a difference. B doesn't deserve to be screamed at, and called a bully. He doesn't deserve to get in trouble at school because he can't control his body. He doesn't deserve for his seizures to make things worse. He deserves to be seen as the awesome kid he is, and hopefully with a little help, that will happen. 

That's a great kid, right there. 

Wednesday, October 16, 2013

Be Kind To One Another

Sometimes I think the autism community looks for ways to be divisive. That all of the controversial topics we argue over aren't enough, and more gasoline needs to be added to an already out of control fire. That we need to call out each and every person who thinks differently than we do, or who wants to change something we don't personally care about. That there is only one way, or one blogger, or one organization to listen to, and everyone else has nothing important to say.

Being nice is hard. It just is. It's not in our nature to lift people up, or think before we speak. At least, it doesn't seem to be. If we are honest with ourselves, I think we'll agree how it easy it is to say something negative, than it is to be supportive. Easier to criticize, than find something kind to say. Sometimes we feel such a great pull to share our opinions, we don't stop and think if we'll be hurting someone in the process.

That is, if we even care.

The truth is, there isn't an "all knowing" person within the autism community. There is no one organization we need to follow like sheep. There are lots of different people, with lots of different opinions and ideas, and most of them deserve the same amount of respect as the next (I say most because there are certain things I am not OK with, and will never get behind. Things that hurt our kids, physically, or emotionally.)

The other day I wrote about the importance of reaching out to those you see in your daily lives, who might be struggling. Who might just need a friend. Who are so caught up in loss and fear and desperation, they can't see a way out. Or who are just having a tough day, and need to know one other person understands. If we aren't careful with our words, with what we put out on social media or our blogs, there is no hope we'll ever be a true community of support. There's little hope we'll even be seen as decent human beings, and not just an angry mob looking to pick a fight.

I urge you to just think for yourself, fight for what you believe in, and don't let anyone knock you down. There is no one cause greater than the next. No one person with all the answers. Don't be broken by those who call your fight wrong, or petty, or stupid. Don't let anyone trivialize your life, or the lives of your children.

Be strong.

Be supportive.

Be a friend.

Be kind.

We'll fight, not out of spite
For someone must stand up for what's right
'Cause where there's a man who has no voice
There ours shall go singing
My hands are small I know
But they're not yours, they are my own
But they're not yours, they are my own
I am never broken

In the end only kindness matters
In the end only kindness matters

                                          -Jewel (Hands)

Sunday, October 13, 2013

It Takes a Village, but Actually...

Yesterday was a rough morning for K. I don't know why, exactly. Tiredness, 9yo girl hormones, something else? Maybe all three? She just started out a little off when I woke her up for dance. I gave her the option of staying home, but she wanted to go. Part of me wanted to talk her into staying home, especially because dance is an hour away, but I left the decision to her. I figured she'd have some iPad time on the way there, and maybe things would turn around.

They didn't.

K went into her class, but didn't participate. I figured that was OK. She was sitting, fiddling with her bracelet, and I thought maybe she was working through something. I hoped she'd start feeling better, and it would be business as usual.

But then she started crying, so I decided it was time for a break. We found a quiet corner, and she burst out in tears. Seeing her like this breaks my heart. Especially because I have no clue how to help her, or even why she is sad. K goes through this a lot, and when she gets this upset she starts pulling to the surface every negative feeling she has.

I stood there hugging her, trying to hold back my own tears. I told her we could just go home, but, again, she wanted to stay. Maybe I should have made the decision to leave, but she's going to be 10 in a few months, and I really want her to feel that she has some control over her own life.

We stayed in our quiet corner for a few minutes, and K went back to class. Things were a little better, and she started to participate a bit, but I could tell she was still struggling.

So was I.

I sat in the small stairwell facing the studio, watching my girl, feeling so alone. All the other parents were talking with one another. Laughing. Socializing. Their children were fine. They weren't sitting on pins and needles, hoping to see just one smile from their kid.

I sat there wondering if I made the right decision, letting K go back class. I sat there wondering what was really going on, and how I could help. I sat there wondering why my child has to deal with such anxiety she can't allow herself to have fun. Because that's what fuels days like this...constant, debilitating, anxiety.

I sat on the stairs, resisting the urge to cry, while life went on around me. I was at a dance class for autistic children, yet I felt no different from when K had tried typical dance classes. Like there was no one else there who understood. No one I could talk to. No other parents holding their breath. It was just a given their kids would have fun, be happy, be OK.

One thing that got me through was watching another little girl try to get K to participate time and again. She would take K's hand, or go over and talk to K while trying to pull her gently towards the group. The good thing about a class for autistic children is that there is no judgement on the part of the kids. No one was looking at K like there was something wrong with her. It was really hard to hold back tears, watching another student try so hard to include my child.

My daughter does have a village. It's a village of her peers. Children like her who don't judge, and who truly want her around. For that, I am grateful. So very grateful.

But as much as we talk about parents needing support, can we truly say that village exists? We are adults, and it's no one's responsibility to come take our hand. We all have our own little group of friends, but do we ever consider those on the outside? Those who could use some extra support? Or are we incapable of reaching out? Really forming the support system every blog, status update, and tweet, tells us is essential?

Could we take a lesson from those children who see someone having a rough time, and instinctively reach out? I think we all know the answer to that question.

The thing is, sitting on some stairs alone isn't going to send me down the rabbit hole. But, I am sure there are parents who are thisclose to the edge, and who is there to help them?

A village isn't really a village if it acts more like a clique. If we truly want to help parents in crisis, we have to be aware when someone is struggling right beside us. When K was struggling yesterday, someone saw that, and surrounded her with love. Didn't give up. Just kept taking her hand. And you know what? She made K smile. She made her feel just a little bit better, which to me is nothing short of a miracle.

It's always a gift when our children show us the way.

I'm not writing this because I am angry at the other parents from dance. That's not my point at all. Sitting there alone was hard, but for me it's not a big deal. I also know I've probably missed opportunities to be there for others. I am writing this because it brought to the surface the fact that we as a community always talk about reaching out when we see someone in pain, but how often does it really happen?

One day there might be a parent sitting on those stairs, so close to that rabbit hole, who really needs support. Who needs an invitation for a night out. Who needs someone to just sit and listen. The question is, are you ready to offer that support, even to someone you don't know? When you talk about a village, are your words empty? Meant just for those you already call friends?

Thankfully, K's class ended on a high note when she received a light up wand to take home (sometimes it's the little things), and seeing my child happy was all it took to make me feel better. I learned a lot, though, watching the interaction between my daughter and her classmate. I realized I don't want to just talk the talk. That I need to keep my eyes open for those who are struggling, and that words on a page are just words until you put them into action.

Light up wands make everything better. 

Wednesday, October 9, 2013


If you are anything like me, you cringe when it's time for open house or parent/teacher conferences. Open house seems benign enough, right? Until a few kids from your child's class make it their job to tell you everything your kid has been doing in school lately. Crying. Knocking chairs over. Just being weird. Why does she do this? Why doesn't she do that? Then there's always the quick talk with the teacher, different from the chats she has with other parents. There's no gushing about how well things are going. It's mostly therapy related, or things they are working on to help your child make it through each day. You walk out, happy it's over (while usually trying to wrangle your overstimulated kid.)

Parent/teacher conferences are more of the same. Sure, you get to look at some work, but the majority of the conference is spent talking about your child's weaknesses. Behavior issues. Everything that's going wrong. Last year I was even asked to make time for an "extended" conference for my son. Not the 10 minute, in and out, talk, but 30 long minutes of listening to how everything was going wrong.

You get home, check Facebook, and notice everyone else has posted these status updates about how awesome school is going for their kid, the wonderful things the teachers said, how their child is practically on the fast track to Harvard! You close down your computer, and give your kid a hug, wishing your conference had been a tribute to your child's strengths, instead of a summary of the opposite.

Last night was open house at K's new school, and I almost didn't go. I have what I like to call "school PTSD" which makes every bump in the road seem like a giant road block, and every phone call from school seem like the beginning stages of another program going down the drain. In my mind, I am always waiting for the other shoe to drop. For people to pull me aside and tell me how poorly things are going. That the next phone call will be the one telling me we are back to square one, when it comes to finding an appropriate education for my child.

K had a couple rough days at school recently, and I was feeling down. I didn't want to attend an open house where I would be bombarded with yet another laundry lists of everything my child can't do, and every weakness she has. I didn't want to see looks of pity on the teacher's faces. I've already seen enough of those to last a lifetime.

At the last second I decided to go. I almost turned around on the way there, and sat for a few minutes once I did arrive, working up the courage to walk in. I was so nervous. I felt like I'd be assaulted at the door by stories outlining how things weren't working out. I tried not to make eye contact, but in a school of only 26 kids, it's hard to disappear in the crowd.

As soon as I sat down, people started introducing themselves. The woman who teaches K art. Her OT. A few other staff members. And they all started gushing over how much they love working with Katie. Yes, gushing. Telling me story after story about my child. Not stories about things going wrong, but stories about how well things are going, and what she brings to the school. How they look forward to their time with her. Are excited to see her each day. And they meant it.

When I say everyone I spoke with focused on K's strengths, I mean it. I know there are times when K struggles, but those weren't the stories I heard. They even looked at her choosing to do work under her desk as a positive, whereas before it would have been a huge issue. I had to hold back tears as I heard about her interactions with the other kids. I rarely hear anything from K about school, but she has a whole life there that is just amazing.


I think I was the last parent to leave, when I thought I'd be the first person trying to escape. For once, I left with a giant smile on my face. I can't remember the last time I left any school function feeling anything other than sad for my kid, and throwing a pity party for myself. All my fears melted away. I realized the little bumps in the road really are just little bumps. That K is at a place where the focus is finally on what she can do, and she is appreciated and cared about by those around her. It was like a weight was lifted from my shoulders. I could stop worrying about her placement. I could stop cringing every time the phone rang. I didn't have to browse the Department of Education site on a daily basis, making a list of other programs that might work, after this one inevitably failed.

A bit of that "school PTSD" fell away. Open house ended up being a game changer for me, and I am so glad I went. I had built it up so negatively in my mind, because it's hard for me to believe any program will go well. That anyone would see my child for the great kid she is, and not as a problem child who no one wants around. Let's face it, last year was tough, and I am still dealing with the everything that happened. It's nice to finally be able to relax, just a little, and know K is somewhere she is happy, and thriving, and an important part of the school. Where she is valued, and loved.

If you are anything like me, you know how miraculous this all feels, and how a placement like this is something every child, every family, deserves. It was a long, hard fight, but so worth it in the end. For the first time ever, I was the one posting a status update about how everyone gushed over my kid, and it felt really, really good.

Monday, October 7, 2013

Facing the Cold, Hard, Truth.

Something has been on my mind a lot lately. Something unrelated to autism or epilepsy or, really, the kids in general. It's purely about me. Sounds superficial, but it's not. I've just been uncomfortable with myself. I've watched myself start to go down this road of self-imposed misery, and I don't like it. I've watched myself be mean, and callous, and judgemental. I've watched myself question others, without knowing their full story. Thinking I'm so much better. That I know more.

But I don't. 

I've found myself being mean, just to be mean. Just to push my own negative feelings onto someone else. Break them down. I've gossiped. I've made assumptions. I've done stuff a 36 year old woman shouldn't do. Ever. Something I should have left behind 20 years ago. I've looked for fault in people, when I should have reflected on myself, instead. Am I someone *I'd* even want to be around? 


It's easy to say you are going to turn over a new leaf. That you can just turn off that "mean" switch, and be a better person. But, it's hard. We're all human, and with that comes the innate ability to fail, and fail hard. I just really don't want to be this person anymore. 

I want to give people the benefit of the doubt. I want to build relationships and friendships, and not help create toxic environments. I don't want my own insecurities, and negativity, to permeate every aspect of my life. 

I want to be happy. Not cynical. Not hateful. Not sad, or angry, or jealous, or envious, or vengeful. Just happy. 

I really just don't like the person I've allowed myself to become, lately. I don't like that I've backed down from being my own own, strong, woman...and let outside influences hang a dark cloud over my life. Of course, it's my choice to stand under that cloud, so it's time to step away. It's not the example I want to set for my kids, and it's not how I want to be remembered. 

Change doesn't happen overnight. A lot of things are changing in my life right now, and I feel like a new chapter is beginning. I'm ready to close the book on the last one, and bring only positive energy to my world. Sure, it won't be easy, but it's something I have to do. Something I want to do. 

Wish me luck. Jen 2.0 starts now.


Wednesday, October 2, 2013

Epilepsy Sucks

We haven't been members of *this* club for very long, but I can already say I hate being here. Watching your child have one Grand Mal seizure (never mind 3 in a row), might be more PTSD-inducing than the worst IEP meeting. Worrying about your child's health elevates scary to a whole new level. Especially when you make the mistake I did, and Google. Or when you read what should be a bittersweet "pay it forward" story on Facebook, that ends up being just a "bitter" story to you, because it involves seizures... and death.

The truth is, I have no idea what is going on in B's brain. Neither do the doctors. His MRI was fine, which I am eternally grateful for, but it leaves us all guessing. What caused this sudden onset? What caused so many within just a few weeks? What does it mean? How will they affect him? Is this forever?

To add a whole new layer of worry, I definitely think B is having some activity that isn't being mitigated by his medication. He still sleeps with us, and I couldn't fall asleep last night because his body wouldn't be still. Everyone moves at night, but his body was twitchy, and rigid, and flailing about. It was almost like watching bits and pieces of one of his bigger seizures, if that makes any sense. It didn't look comfortable. Though he was asleep, I could tell his little body wasn't getting much rest.

Thankfully, I did think to video it. I sent 3 videos off to his neurologist this morning, asking (begging?) for answers. B has been more hyper lately, and his tolerance for anything has gone down the toilet, which I think is because he's just tired. Both my kids tend to get hyper/silly/crazy when tired, and B has definitely peaked. It has been worse since the seizures began, and isn't getting better. I am hoping there is something we can do so the seizure activity is less at night (if that's what it is), and he can get more rest. I think that would probably help with the rise in behavioral issues, too.

I do want to end this blog on more positive note, though, so here's a little victory from last night. B has severe sensory issues. So much so, that his diet is extremely restricted. I'm talking cheese sandwiches, some types of pizza, some snacks, and a few fruits. Oh, and plain cheeseburgers from McDonalds, which he would live on if I let him. Even some things I know he likes can be hit or miss, depending on the day. Food is a constant struggle, but I never stop offering different things. Last night I made pasta, which is something he never eats. I pretty much begged him to just try one noodle, and he agreed, which was a miracle itself. I added a tiny bit of teriyaki sauce to make them like the "Chinese food noodles" he claims to like, yet never actually eats.

It took a while, but he finally chose one noodle, and ate the whole thing. Without screaming about how gross it was. Without crying, and telling me he was "just kidding", and really didn't want to eat it. Sure, it took some time for him to build up enough courage to eat it (he even told me he was really scared), but he did! It was just the one noodle, but it was a HUGE step for B. I mean, huge. We are working with his OT on eating issues, but it's something like a 7 step process, from just tolerating food on the table, to plate, to smelling or touching it, etc, etc, until finally trying it, and sometimes I get a little antsy. I was so proud of B last night. I'm going to ride that noodle victory for a while.

Might not seem like much, but this is a BIG deal! 

Tuesday, October 1, 2013

Bucking the Mainstream

Last week we started the process of getting K a new neuropsych evaluation. The last one she had was in first grade, and because she is currently outplaced, we need something new to figure out what's best for her moving forward. The school she is at, while great, isn't a long term solution, but we have yet to tour any school that fits the bill. We hope the new testing will point us in the right direction, when it comes to choosing another school down the line.

The thing is, I am nervous the kind of school we want for K doesn't exist. I also worry that we'll be pushed to choose a rigid, ABA, school. Why? Because after spending just a short amount of time with K, our new psychologist asked if we had toured one particular school, which is considered the "most" ABA school around. It was a school not even on our radar, quite honestly. It has a long wait list, for one, but it is also a school I didn't think served children at K's place on the spectrum. I know these days it is cool to loathe functioning labels, but the school, I thought, served a more severe population (although I could be wrong.)

Honestly, we don't really want K in a strict ABA program. Yes, she requires a very solid routine, but she is also a child who ends up feeling bad about herself if she doesn't "earn" all her stickers, or rewards. She suffers from probably the lowest self-esteem possible, and ABA isn't great for a kid like that. Sometimes it can just leave a child feeling like everything she does is wrong, and I am trying so hard to get away from that model. The school she is in now doesn't use ABA, and she is doing so, so well. But, the reality is, we'll have to move on from there eventually (for many reasons.) So far, we are coming up empty in terms of options.

I know there are various ways ABA can be done, and there was a time it was the only therapy I wanted (mostly because I was told it was the gold standard), but I just don't see it working for the kid K is now. There are parts of my child that ABA would want to change, and I am really in a place of wanting K to be herself. To embrace who she is, and not think she needs to be a different person in order to be a worthwhile human being. Passing is not my goal for K. Mitigating anxiety, helping her achieve the things she wants to achieve, those are my goals. Making sure she stays seated for dinner, doesn't jump up and down when excited, or sits in a class of 30 kids without issue, are not. My hope is that she can surround herself with people who completely accept her, who will love her, quirks and all. I am sure that sounds naive, but not more naive than saying I hope one day K is a different person, who doesn't look autistic.

Unfortunately, because ABA is the gold standard, that's what most schools use. Changing behaviors is a big part of therapy when you have an autistic kid. But, what happens when you don't want to change behaviors? When you realize trying to change who your kid is, only makes things worse? I'm not talking about letting aggressive behaviors go (although I do believe behavior=communication, and there is always a reason for aggressive behaviors. I know with K there certainly was, and finding out the reasons behind them=buy buy aggression.) I'm not talking about letting my kid get away with whatever she wants, because she's autistic. I still teach my kids the same I would any child, but I am not looking to change who they are at their core, and, unfortunately, that's the experience we have had thus far with ABA, and related social teachings.

Some have suggested I just homeschool, which, sure, is a great idea, except I know my limits, and there is a reason I changed my major from Education after just one semester. I don't have the patience. I don't have the degree. I don't think I would do K justice being her teacher. If at all possible, I'd love for her to be at school, with peers, and with people qualified to teach her. Homeschooling is a last resort to me, and we aren't quite there yet.

But, on the flipside, I am realistic that the program we want for K very well doesn't exist. Getting away from the goal of wanting our kids to "pass" is a fairly new idea, and the majority of people still see autism as something to be fixed.

So, here we are, going forward with new evaluations which, in the end, will probably suggest programming we don't want for our child. We'll move forward with the testing because we need it to keep K outplaced anywhere, but I would be lying if I said I wasn't nervous the district will use it to try and force programming we just don't want.

I'm not saying ABA is inherently evil, or that there are kids who don't benefit, but I really believe it won't help K at this point in her life. If only there were more schools that looked past ABA, as well.