Cousin It and the Bride of Frankenstein are in the car!

In my last post I told you that our family is dealing with a tremendous amount of stress right now. Since then my mom has been in and out of the hospital...and is currently back in.

When it rains it pours. In our case, it feels like a hurricane.

I feel like a raw nerve at this point.

However, something happened this morning that gave me a moment of humorous relief, and I thought I would share it with you. I find it important to focus on the good stuff to get me through the bad stuff. So, here is my attempt to do that.

Monkey is in orchestra. Orchestra practice happens twice a week before school starts, and in the case of Monkey's school, that time is 0-dark-thirty (a.k.a. butt crack of dawn).

Up until recently, we have driven to his school under cover of darkness because we were always up before the sun. It pains me to even type that. I would rather have been in my warm and comfy bed any of those days...

Well, I realized this morning that spring has sprung, and we no longer drive in darkness.

It was a typical Pacific Northwest morning: overcast, gray and misty. So, I did what I always do when I am stumbling around, bleary-eyed in the morning. I attempted to make Monkey's lunch and get him to eat breakfast, wake up Prince Charming to get his coat and slippers on, and then we headed off to orchestra. I put the defrost and heater on high so that I could see something through the windows of the car, and we got our trip underway.

Now, for the visual:  I am wearing some God-awful sweat pants that look like they've been through a war and have shrunk through repeated washings, which makes them unfashionably highwater. I have on my husband's old flannel shirt that he didn't want anymore but I thought it was too comfy to toss out. My slippers are fuzzy, but well-worn in that matted down, filthy fleece kind of way. And, the best part - I am sporting the most awesome naturally curly, long-haired bed head you have ever seen. I haven't even bothered to run a comb through my hair or even brush my teeth. Makeup? Ha! I laugh in your general direction. I am the antithesis of "put together."

So, we are driving along through the fog and the gray and I start to get a glimmer of light coming through the windshield. Could that be the sun? As we get closer to Monkey's school, the sun gets brighter and the fog gets thinner. It's actually quite a beautiful morning and I am silently reflecting on that.

We pull up in front of the school and I park in the line of cars with other parents waiting to let their children off for orchestra. The sun is brightly streaming through my sun roof and that's when I looked at myself in the rear-view mirror.

BIG MISTAKE!

To describe my hair as "finger-in-a-light-socket, sideways-mohawk, Bride-of-Frankenstein frizzy" does not even begin to touch what I saw. There I was in all of my backlit-by-the-sun glory, exposed by the sunlight to all of the cars around me. Those poor parents and kids that saw me must likely still be in shock.



I wasn't even this cute - she has makeup on!
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I averted my eyes from my own freak show to glimpse at Prince Charming in the back seat.

He likes to bring a throw blanket with him in the car when we take Monkey to orchestra. This habit originally started out as a "I'm sleepy and cold" thing and ended up being a sensory thing. He would throw the blanket over his head, much like you would if you wanted to pretend to be a ghost. It helped him block out the bright car lights that we would see in the dark mornings, and he liked the feeling of a warm and soft enclosure. It was a sensory tool he figured out on his own, so I have supported him continuing to use it in the mornings that we make the early drive.

As I looked at Prince Charming, the only thing I could think of was that he looked like Cousin It. He was covered up by a fuzzy blanket and it struck me as funny.



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Apparently the sunshine made me a little loopy or something.

Here I was, the Bride of Frankenstein with my raggedy clothes and wild hair, and Prince Charming was a more colorful version of Cousin It.

I felt bad for Monkey having to asssociate himself with us in light of our early morning, roll out of bed version of crazy. Had he been a neurotypical junior high schooler, he would likely have asked me to park down the street so he could walk to school so that we didn't embarrass him. Thankfully, that is not an issue we have to deal with (yet).

I think maybe next time I take him to orchestra I should at least comb my hair. Darn that sunshine!

The rollercoaster of change

I try hard to be real with you. I try to be authentic. I’m not about giving you only the best version of myself and my kids. If you’ve been reading my blog for any length of time, you probably know that I keep things fairly eclectic. I go from serious topics to recipes to humor to a myriad of other things, and I try to keep things light whenever possible. Humor is one of the best coping tools I’ve got.  

I’m going to be honest.

I’m struggling.

I work hard at many things. In order to keep my head above water and not be overwhelmed by everything going on in my life, I put on an exterior of positivity and confidence. It’s not a cocky thing. It’s not a fake façade. It serves a purpose. You know, one of those “create your reality” trains of thought. I know I won’t do any good to myself or anyone else if I wallow in all of my problems, so I don’t. It’s a deliberate choice, and I think it works for me most of the time.

But, I’m struggling. I couldn’t fall asleep tonight because I couldn’t stop thinking about things, and the emotions were too intense to allow me to sleep. So, I got back up to write this post. Since I started this blog, I have found that writing posts can be quite therapeutic. It helps me process what’s going on in my life so that it somehow feels more manageable. Writing is another one of my coping tools.

While change can be good, it feels really scary right now.

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I was at a place where I felt our family was more stable with the boys’ behaviors, their schooling, and even our finances were starting to slightly improve. None of it has been easy. However, if our past is any indication, getting comfortable usually means change is about to happen. I never seem to see it coming. You’d think I’d be used to the rollercoaster effect by now, but I’m surprised every single time we crest the hill and come screaming down into a new challenge.

Spring has typically been a hard time of year for us, so I know I shouldn’t be surprised. Spring Break in particular has been a time of regression for my boys in the past. And yes, we are smack dab in the middle of Spring Break right now. I don’t know what it is about the “spring forward” time change, the plants blooming and growing, and things happening with my boys, but there is something there.

I learned very recently that Monkey is having some issues that are affecting him much more than I previously realized. I don’t think he deliberately tried to hide anything from me, but he just has a hard time communicating what’s going on when it involves emotions. It’s easier for him to suppress things than to talk about them, because talking about it makes him very uncomfortable.

Of course, then I have immediate guilt about being too distracted from my nonprofit work to notice if there had been any silent signals from him. It’s a mother’s job to know. Was I paying enough attention?

Monkey is a very complex individual. He is layered like an onion. I continuously find there is more going on with him than meets the eye. It’s just really hard to get some of his layers to peel back so that I can gain a better understanding.

I immediately reached out for some psychological assistance to discuss my specific concerns, and was able to get in to talk with someone highly regarded for their work with autism. Monkey had his first appointment on Monday – on the first day of Spring Break. Fitting, isn’t it?

I have no idea how we are going to pay for it. I just know he needs it.

At about the same time I was figuring out the issues with Monkey, I learned that Prince Charming is struggling socially at school. Since he started talking, this has not been a huge concern for me. He has been much more social than Monkey, and I didn’t think I’d need to worry about that so much with him. Well, I was wrong.

And, with Autism Awareness Month, this is one of the busiest times of the year for me in my nonprofit work. It’s the height of event season and I’ve been at a dead run for God knows how long. I’m exhausted. That’s why I’ve been scarce here on the blog, because I’m too tired to keep my eyes open long enough to type anything coherent for you to read.

In the past week my Grandma was placed on hospice. It was not unexpected, but it’s still hard to grasp. Her brain doesn’t seem to be failing her, but her body is. I am thankful that I was able to go down and see her again last week and have her video chat with the boys on my cell phone. She thought that was a hoot. I haven't yet figured out how to prepare the boys for her eventual passing. Frankly, I don't know how I will deal with it for myself either.   

Tonight I learned that my parents will likely be moving back out of state. They only came back to Washington about 2 years ago, after having missed a good portion of the boys’ childhood. It was such a blessing to have my parents back and involved in their lives again. I have no idea what I will tell the boys to make them understand why they are moving. I think it will have a huge impact on Monkey in particular, who is already struggling to talk about things that make him sad. Having his Grandpa and Grandma move away will be hard for him to process.

And, I’m sad for me. I will miss being able to pop by their house. I’ll also miss the big surprise we got every time they showed up at our door unannounced and the kids went wild with excitement. And, I’ll miss all of the coffee dates my dad and I would squeeze in when the kids were at school. The thought of all that going away in light of everything else simmering in the background was the straw that broke the camel’s back.

So, I'm struggling.

I know this stuff is small potatoes for a lot of people. I also know that there are much bigger problems in the world.

But, for tonight, I’m allowing myself to fall to pieces over all of the changes that I don’t feel ready for, so that tomorrow I can hopefully re-focus and press forward.     

 

Legal priorities in WA: Is this an April Fool's Day prank?

I'm having a nausea-inducing sense of deja vu right now, and I wonder if I'm somehow getting punked on April Fool's Day (a.k.a. the first day of Autism Awareness Month). Beware, because a rant is a' comin'...

Scheduled today in my state's capitol of Olympia, Washington, is a Senate Health Care Committee hearing to discuss an abortion mandate, known as the "Reproductive Parity Act."

This is the same exact type of Senate hearing that I testified at when I was working to enact "Autism Insurance Parity" in the State of Washington. Shayan's Law, as it was commonly known, never saw the light of day because it got shut down by the Health Care Committee every time it was presented.

We had a HUGE grassroots effort, and it was standing room only at our particular Senate hearing. Autism families and our various supporters joined together for rallies at the capitol. Hundreds of us were knocking on the doors of our legislators' offices, scheduling meetings with them, sending emails, and making phone calls to voice our opinion about the importance of autism insurance parity for Washington.

For what?

Nothing.

Autism doesn't matter enough to the law makers in Washington State to do anything about providing mandates for coverage like so many other states in our country have already done.

It appears now that abortions could be more important than autism.

Pardon me while I vomit.

The fight for autism continues. Small strides are being taken through the work of some dedicated attorneys and an organization that is working to sue every insurance company that operates in Washington State, until autism coverage is mandated for everyone. God bless them for continuing the carry the torch of autism for all of us!

And, they are winning!

People are starting to get coverage for necessary autism therapies in drips and drabs. Unfortunately, my family's insurance company has not entered the court room yet, but their day is coming. I only wish it would come faster!



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Until then, my kids will continue to be denied coverage, and we will continue to not get the therapies they need so much, all due to the fact that we are not wealthy enough to pay for it all out of our own pocket.

It is SO WRONG.

It saddens me to think that abortion mandates are more important than autism mandates. Our kids with autism need help. Families are suffering under the financial burden of autism. Children are not getting services that could help them in both the short and long-term. The people who could enact meaningful change that would better the lives of so many of our state's citizens choose not to.

This is not what I consider to be a good start to Autism Awareness Month.


(Please note: This is my opinion about the importance of one issue over another, and I am entitled to feel the way I feel. Negative comments that seek to engage me or any of my readers in a bitter political debate are not welcome.) 

Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.

In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.

A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  

As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     

I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.

I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   

Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.

This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.

To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    

One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

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I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.

For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.

A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.

We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?

If you haven’t yet thought about it, maybe now is the time.             

 

The R-Word Needs to Go B-Bye!

 

Children with special needs should never be made to feel “less.” They may be different, but they are not less. (Thank you, Temple Grandin!)

I am fortunate that I have never heard the R-word uttered in my presence as it relates to any child. Yet, I know it is happening. All over the place.

Children and adults that have challenges, along with their families, are being made to feel like they don’t deserve to share the planet with the rest of the population. Judgmental people and hurtful words run rampant.

When I hear stories of people I know, bloggers and friends, having to experience this sort of discrimination, it saddens me. It’s not easy to live and thrive with a special need or an intellectual disability. Families go through a lot and they do not deserve to be ridiculed. You would think that we as a society would be more tolerant by now.

There is still a lot of work to do! It can start with you.

Spread the Word to End the Word.

Visit http://r-word.org and learn more about how you can make a pledge and participate in activities near you.