Thursday, July 30, 2015

Hot Lava

This, my friends, is a metal called Inconel. While in HI at Volcanoe National Park, Evan's geologist grandfather was talking about types of lava; Evan, on the periphery of our group (it would have appeared that he wasn't engaged in the conversation if you were passing us by), asked Jayme to ask Grandpa if there was anything that lava could NOT burn through.

"No," answered Grandpa, "lava can burn through everything".

"Not Inconel." answered Uncle Ron.

The conversation then turned to Inconel, a metal no one besides Uncle Ron had heard about, and then we went on our way.

Fast forward to our arrival back to the East Coast, and a few days go by until I ask Evan if he remembers what the metal is called that Uncle Ron was talking about (I'm not sure HOW this came up in conversation, but apparently this made an impression on me too). Without hesitation, Evan answered correctly.

And, his fascination with Inconel was born.

Well, we've bought him a Chop Wizard, for crying out loud, why not a little Inconel, at a mere $20 a pound. He has been waiting not so patiently for it's arrival, and he was super excited that it finally came today. Evan wants to build an Inconel typewriter...good luck with that one, Daddy (Evan's go to build-it and technology guy).

Jayme jokes that we are probably on a government watch list now for purchasing it, since it holds up to such high heat that it's used for rocket-launching applications. I did find that it is also used in NASCAR and Formula One exhaust systems, so perhaps we'll take up car racing.

And, in case you are wondering, Inconel hurts when you hit your sister with it...we've tried that use out already.

Tuesday, July 28, 2015

Summer Living

I long for the simple summers that we had when my kids were really little. When our biggest dilemmas were where to go on any given day, and would I pack lunch or buy it? The days when the most stressful thing was figuring out when everyone was going to nap. I am a stay at home life was not rough.

Then, Evan got a little bigger and life got harder. When he was 3, our summers started to fill with speech therapy. When he was 4, summer school started in addition to speech therapy. When he was 5, we added occupational therapy to the mix. At 6, our summers are filled with school, speech therapy, and 5 days a week of ABA therapy (karate has replaced occupational therapy for now and is once per week).

This is the first summer that Evan has a notion of what "summer" means. He is realizing that it should mean "no school" and "fun things" and this makes going to school (a.k.a. camp - and, please, don't call it what it really is if you see him) difficult.  And then our afternoons and evening fill with home therapy and there goes the play dates, evening concerts and movies, picnic dinners, or long days at the beach.

I'll be honest here spontaneity and sense of adventure started to wane about 3 years ago, when taking Evan out was nearly impossible. Now that he is older, and some trips are actually doable would it not be for his schedule, I don't even know what to do any more. So, as much as I complain about being a hostage to Evan's school and therapies, it actually makes my life easier. Are you wondering where you can find me these days? Home - I'm always at home.

So, welcome to one of the internal struggles of raising a child with autism. How do you balance letting Evan be a kid with teaching him how to be a kid. When you are in a race against the clock, it's hard to not spend every moment in therapy or thinking about therapy or researching the next therapy. His days of learning are essential to him gaining access to an independent adult world. He will not be able to reinvent himself in college or as an adult if we don't give him the skills to succeed now. Will he be able to drive a car? Will he manage his own money, or will his sisters take over that task when Jayme and are gone? These are the questions that we have to ask ourselves now, so that we give him the foundation that he needs to do these future skills. The autistic brain is most flexible (and therefore the most amenable to learning, according to research) between the ages of 2-5. Evan was not diagnosed until 4 years 3 months. You can see our dilemma.

Fortunately, we have surrounded Evan with amazing private practitioners that understand this struggle and are more than accommodating should we need a night off. In fact, I'm about to play big time hooky and skip three ABA sessions and a morning of school so that we can enjoy a long weekend away, and I'm trying not to feel guilty about it. And, how awesome is Evan's speech therapist - part of his speech therapy took place in our yard while 5 kids played on the Slip n' Slide. Yep...that warmed my heart and reminded me of the care free afternoons that I used to have.

It's summer time, and the livin' is not so easy, but fingers crossed that I look back on this time 10 or 15 years from now and not regret a second of it.

Saturday, July 11, 2015

Happy One Year Blog-iversay

July 8, 2014 was my first blog entry,

Followed shortly by my second entry,

One year later, I find myself thinking I wish I'd done this sooner. I really, really enjoy chronicling our crazy life, and I think it provides good perspective to our family and friends. You know all those Facebook posts that say people only post the 2% of their lives that they want you to see, and hide the other 98% (or some such thing)...well, I'm airing our worst dirty laundry out there for you all to see and I don't regret one second of it. It turns out that writing is a bit therapeutic for me, and along the way I've reconnected with old friends, made new ones, and have realized that you don't have to look too far to find someone connected to autism.

I love to read other people's blogs (and sometimes I'll share them on my FB feed) that make me go Oh my gosh, I've TOTALLY been there before, or Uh-huh, I can completely relate to that. So, you can imagine my joy when I get that same feedback from readers of my blog. Sometimes I write about what I think is the craziest thing that no one else has to deal with, and the next thing you know, I've got a bunch of shared stories from my friends. My favorite example of that is this blog: because as Evan was enjoying his Chop Wizard, I heard about other's bacon bowls, lint lizards, and magic bullets; it still makes me chuckle.

One friend nicely told me one day that I put to words what she goes through and it makes her feel good to know that she is not alone. Wow, that made my day. It wasn't my purpose when I started, but I find myself writing now in hopes that someone new may read my blog and will feel the way my friend feels; knowing I give voice to other people's struggles is an incredibly powerful feeling, and I'm thankful that I am able to do that.

Sometimes, I'll write a post and it will really resonate with people when I least expect it to. An example of that would be this post: My cousin made mention of this post at Christmas and told me it made her emotional because she could totally relate to the way I feel that what my children call me is part of my Mommy identity. I was surprised that this evoked such emotion in someone else, and was moved by that, but even more so when her husband, a PhD in psychology, mentioned that from a professional perspective, he had never considered the parent point of view in such a way as I had described it. Based on that discussion with him, I've since shared this post with Evan's ABA team so that they can have, hopefully, a similar experience.

And, of course, there was this post:
that was reprinted on I wrote that piece in about 10 minutes, totally in the moment of my emotions after Lily's band concert. I'm finding that my best pieces are written raw, when I'm feeling angry or sad or happy or frustrated, etc. If I think too much about a topic, I can't write about it well - is this a common writer thing?

Many thanks to all my readers, those I know and those I don't. I'm thinking about making a FB page for this post, as there are so many funny things that happen in our life that I can't even capture on the blog. Like, how yesterday I asked Evan about doing something, and he responded, "No, that is so last Tuesday". What?! LOL!! It turns out that comment is from Evan's latest binge watching obsession Phineas and Ferb on Disney XD. Oh, this kid is so funny...and frustrating...and amazing...and maddening...and worth every ounce of effort we put into him. Thanks for coming along on the journey.

Friday, July 10, 2015

BCBAs On A Mission

We had quite a fun ABA session today...our therapists went all covert and stuff, hiding in bushes and scaling our rock wall (no, I'm not joking).

Before I explain more, you need to understand what led to this point:
     One of the hardest things about Evan's autism is that it remains relatively hidden to everyone but us. He has had very public meltdowns and you'll often find him with his headphones on, but otherwise he is a very well behaved, polite boy. You may notice that he might ignore you when you talk to him, and if he does talk to you long enough then you might notice that his speech is a little bit off. If you are 6 - well, to be honest I have no idea what his peers think of him. If you are younger than 6, Evan wants nothing to do with you and he hates babies. If you are a tween girl, then he hates your noise. If you're looking at him from afar, then you probably think nothing is amiss.
     Though his primary behavior therapist has seen some non-compliance and tantrum activity in our home, overall Evan is very well behaved when she is here. And, after 6 months of work with our team of therapists, Evan is more compliant with us, is pretty much poop trained (finally!!), and is sleeping in his own room.
     Unfortunately, he will fly off the handle in a second, gets extraordinarily angry, head bangs, bites, and is destructive within our home when it's just the family, and you'll find at least one of those things happening on a daily basis.

If a tree falls in the woods and no one is there, does it make a sound?

    Of course, but how do you prove it? Hidden cameras of course :)

So, enter the covert behaviorists.

First, we spent two previous therapy sessions gathering data on Evan's compliance to a certain demand (cleaning). In a nutshell, he was 100% compliant with the therapists when I wasn't present; he was 100% compliant with me when the therapists were present but had some verbal protests, though not of any statistical significance. The next step was today, which was testing him on his compliance without him knowing that the therapists were present.

To do this, we set up a video baby monitor so that they could see him, and then I had my cell phone with an ear bud so that they could hear him better and give me instructions and feedback. I did laugh out loud when I heard that they were hiding in the bushes, but once they were fully set up outside the house, we got started though they did need to move inside to our in-law apt/my business headquarters once the battery to the video monitor started to run out. We ran the exact same program we used the previous sessions, with Evan being given verbal demands to clean, with only me present in the house. Once that program ended, one of the therapist came into the house to "drop by" and watch Evan do some of the same tasks "to see how well he was doing". She then left, and we once again gave Evan cleaning tasks as instructed by me.

Though I don't have the formal data summary, in my opinion what we found was compliance during the first session with increasingly agitated verbal non-compliance (i.e., Evan complaining about what he was doing, but doing it nonetheless). When the therapist came in, he was 100% compliant, chatty and happy the whole time. When she left and we began our third session, he became increasingly angry and destructive, ultimately refusing to do the task asked of him and running away. Oh, and he told me I was the worst mother ever.

Despite the contrived circumstances, what the therapists were able to elicit was pretty much the response that Evan has with us that has not been previously viewed by them. With this information, they can then customize an effective treatment strategy that we'll begin next week, and will again involve them coaching me through contrived demands from a remote location so that Evan does not know that they are here. It is them teaching me to teach him how to appropriately respond to things that are not pleasant to him. I couldn't be more excited to get this going, and I think the scientists in our behaviorists are super giddy right now with their new found data and treatment ideas.

As we were discussing all of this after the sessions had finished tonight, I mentioned that the fact that Evan was compliant and cleaning for me for so long was a huge improvement over what would have happened before he started ABA in January. Based on this statement, and the data gathered today, the BCBAs felt strongly that the prognosis for Evan is excellent, and that with the proper training and teaching we will see huge improvements in his behavior. As long as I don't think about how much work this is going to take, hearing those words makes me very happy (though don't forget, we still have sensory processing disorder, speech and language delays, and learning disorders to fit into this equation).

At this moment I am feeling incredibly thankful to have found, thanks to a friend who I hope recognizes herself in this statement, such an amazing group of therapists that are committed to the scientific process of behavior, listen to what we tell them, and recognize Evan's potential and what an amazing boy he is. Many thanks, my super ninja team.

Wednesday, July 8, 2015

We Survived Vacation!

We did it. We survived a huge vacation and are already talking about our next trip - yeah!! We flew from Boston to Hawaii and back without any major meltdowns or incidences; it took a lot of preparation and here is how we did it:
  • Jayme and I started prepping about 6 weeks out.
  • We asked Evan's home therapy team to create a social story and practice airplane rules and etiquette with him, which they did approximately 3 times per week for over a month.
  • We had copies of his medical diagnosis and a written letter from his doctor.
  • We played the autism card in security and skipped the majority of the line.
  • Evan wore his headphones nearly the entirety of our travel days.
  • We wore autism shirts, pins, and bracelets...we were a walking autism advertisement, but that opened dialogue with several other travelers and one steward whose grandson has autism (and earned us a free movie player from Seattle to Boston).
Evan was an amazing traveler and we were pleasantly surprised; it turns out that the plane ride was his favorite part!! Once in Hawaii there were ups and downs, nothing we didn't anticipate, though I admit that the morning that I volunteered to sit with him in the condo had me gazing longingly at the ocean as I teetered in and out of anger for having to miss out on a half day of my once in a lifetime trip. I'm not going to lie - sometimes my lot in life pisses me off.

Our activities were all planned around Evan, but one day we did divide and conquer so that Lily and I could explore and hike with my sister and niece. Evan did have some days where he tolerated being on the go for the whole day, but this was always followed by a need for significant down time and hours being in our condo with him immersed in his own world. He was even able to do some hikes on his own, though the backpack I used to carry him on our first hike definitely came in handy.

Jayme and I each spent at least one meal, maybe more, with Evan who was not at the table for some reason or another; most of the meals that we ate out, Evan did really well, but there were some where he did not. I still eat every meal as fast as I can...a habit from the early years of my children that I just can't seem to break since my meal could get interrupted at any point.

Evan had some really high highs on this trip and some really low lows. Perhaps one of the lowest that sticks out in my mind is during a tantrum in our condo (I can't remember what the instigating factor was), he ran from the living room screaming, "I don't know what is happening to me!!". That was heartbreaking, I tell you. He is learning how to have control over his body and thoughts and words, but it was clear that in that moment he did not, and he knew it but couldn't help himself. One of my hopes for his future is that he can put into words what some of these episodes are/were like for him, since right now my only glimpse into what is happening in his brain is reading adult perspectives and other people's perceptions of their autism. I would love to know more about Evan's autism and what makes him tick, but it's incredibly hard to reach right now.

Acclimating back into our schedule has been difficult, but he is doing a great job considering that he was thrown right into summer school, speech therapy, and ABA upon our arrival home. He went back to sleeping in his own bed without difficulty and has not had a poop accident in a long time. I did come home with a list of behaviors that we need worked on; being out of our normal routine and in public a lot more than we are used to was great for assessing where Evan is from a social skills perspective, but I don't want to use up an future blogging material at this point :)

For now, bring on the rest of summer...