Tuesday, May 29, 2018

Please Don't Be Sorry

I had an experience today that didn't sit well with me. After a bit of contemplation, I think I've figured out why.

Here's the set up: I had a dental cleaning today (and can I just interject that I really, really dislike dental visits on a good day); my dentist popped in to say hi and check on the family, asking specifically how Evan was doing. After she left, the hygienist asked what was wrong with him, and I told her that he has autism. Her face fell and scrunched up all at the same time, her shoulders dropped and her hand when to her heart; "I'm so sorry", she said.

I immediately felt weird about her reaction. I didn't feel right. Her reaction didn't feel right.

"No, it's o.k.", I said, sitting myself taller in the chair. "He's good."

The hygienist went on..."My Aunt's daughter had Ash-berger's, and she went through hell".
Yes, the misspelling is intentional. You can imagine my eye strain as I withheld my eye roll, though I couldn't even vocalize a reaction because I was still taken aback by her first comment.

To be fair, this woman meant no harm or disrespect with her statement; in fact, I would argue in her favor that she was doing her best to be empathetic and to connect with me. The Gretchen of 5 years ago, honestly, would have a) started crying, and b) said, "thank you", while appreciating that someone was acknowledging my struggle. The Gretchen of 1 year ago would have felt the same, but without the crying.

But, today...

                ...today's comment felt Unwelcome. Unwanted. Uncomfortable.

So, what's changed? How did I go from there (yes, please feel sorry for me) to here (I don't like the way that comment feels)? This is what had me thinking this afternoon.

And, here is what I ended up with - somewhere along the line, within the last year, the last 6-8 months really, Evan became AWARE. He's trying to figure out this autism thing, what it means inside his body, and what it means out in the world. From Day One of his diagnosis, we said we would never, ever be embarrassed or ashamed of autism, and that is what we've taught him. Yes, there are tough days and hard work, but autism is also amazing and we are trying really, really hard for him to see that in himself.

Just a few days ago, Evan was making a comment to me that started, "some autistic people...", which really made me pause. It was the first time I've heard him talk about autism in language that is not 'People First'. Disability advocates have fought tirelessly for everyone to adopt People First Language, which places the person before the disability (i.e., the person with autism, versus the autistic person); this is somewhat controversial within the autism community because there are many people with High Functioning Autism that proudly call themselves Autistic. In general, our family practices People First Language; we rarely refer to Evan as 'autistic' but instead say 'he has autism'. However, when I heard him say, "some autistic people...", he meant people like him and what I felt was pride. Not shame. Not degradation. Not disadvantaged. THIS, this is EXACLTY what we are trying to instill in him.

I think, then, what made  me so uncomfortable earlier today was that in the look the hygienist gave  me I saw pity. Pity, however, is not even in my emotion catalog and I didn't like the way it looked when she offered it up.

You can feel sorry for my stress, you can feel sorry for Evan's stress, you can feel sorry for the hardships that surround us. You should never, not ever, feel sorry for Evan. I would take away his autism for the struggles it causes, but I would never strip Evan of his being.What I learned today was how far I've come emotionally on this crazy autism ride, and, more importantly, how great Evan is doing in his personal acceptance of being an autistic person. Relentless Forward Progress.

Image result for accept me the way i am quotes

Wednesday, March 28, 2018

How Do You Measure Progress?

Progress can be painfully slow, sometimes only visible after time and perspective. Other times it can be super fast, like turning on a light switch. Today, progress looked like this:

It looked like a chip sandwich, to be exact.

About 2 weeks ago, Evan decided that on Wednesdays he would bring lunch to school. This announcement came as surprise to me; after all, Evan has bought lunch for approximately 650 days in a row (three years of school, K-2, plus 3/4 of this school year, minus a couple of dozen sick/vacation days). I've tried in the past to get him to pack a lunch, but to no avail. He has eaten a bagel for probably 645 of those 650 days. You can understand my shock, then, when he announced he wanted to bring lunch.
Great!, I exclaimed (not too enthusiastically, should my response negate his desire), what would you like to bring?

Chips, he answered.

Okaaayyy.... (This is PROGRESS, I reminded myself), and so I packed him chips.
** If you've ever wondered who 'that parent' is who allows their child to pack ridiculous lunches, that would be ME. I hope, however, that in the future you judge less 'those parents' and consider more that there could be a whole lot going on that you hadn't considered.

Imagine my surprise then, when this morning he announced that he was going to have a sandwich for lunch and that he was going to make it himself. YES!, I exclaimed (not too enthusiastically, should my response negate his desire - again), what kind of sandwich do you want?

A chip sandwich, he answered.

Okaaayyy.... (This is PROGRESS, I reminded myself), and so I cut off the crust and he made his sandwich. He even put it in his lunchbox.

This is all that remains of that sandwich:

While a chip sandwich may seem so insignificant, what it means to me is that I finally have something that Evan will eat on the days that he must bring a lunch (like his upcoming field trip), because before a couple of weeks ago his choices were limited to cafeteria lunch or no lunch.

PROGRESS, one chip at a time. I'll take it.

Thursday, March 8, 2018

Do I Have a Disability?

And, in the first aid section of Walgreen's, in the middle of the city, the question finally comes...
"Mom, do I have a disability?"
With years to ready an answer, I was unprepared. So, with one second to answer, I took a quick breath and said, "Yes".
But, I couldn't stop there.
"Or, you have a different ability. You are good at so many things that other people are not."
Evan didn't understand, so he said, "small words please".
"You have a disability, but that isn't a bad thing. You are so smart with things that some people are not."
"O.k. I'm good at finding things."
He's not, actually, but tonight I said, "Yes, yes you are buddy".
"Ya, o.k."
There you have it.

Friday, February 23, 2018

Is That My Autism?

The most amazing thing has happened...well, maybe not the most amazing thing, but autism continues to fascinate me, and so I happen to think this is pretty noteworthy stuff. In the last two weeks, Evan has taken a significant interest in trying to figure out his autism; he's been verbalizing things about himself, and then he'll ask, "is that my autism?".

Here is a bit of background knowledge that is probably important to understand: after Evan was  diagnosed in 2013, our very first family rule was that we will not shy away from the label. We are not ashamed of, nor embarrassed by, the word AUTISM. Autism is part of who Evan is and we love him  unconditionally. We will educate those around us that do not understand (hence, part of the reason I blog), and we will model tolerance and acceptance. Above all else be KIND, is coming out of my mouth a lot these days as I help my older girls navigate the social complexities of middle school - we must practice what we preach.

Anyway, helping Evan understand himself has been tough. He's asked in the past what autism is, and since it's difficult for a young child with a language disorder to understand the neurological basis of his disorder, we've struggled to describe autism to him in a way in which he doesn't feel badly about himself. We highlight his amazing memory, for example. In the past he has never felt like he has had any limitations, which is great (but also hard because he doesn't understand why I keep dragging him to therapy).

Recently, however, he has begun to notice that his hearing/understanding of words may be different. He complains that his brain "slides" and it's sometimes difficult to pay attention. So, maybe because he is maturing, and definitely because we don't hide the word autism, he has started asking me lots of questions about himself as they relate to autism. Here is a sampling of his questions:

  • Does autism have hearing hallucinations?
  • My hearing is super sensitive, is that my autism?
  • Does everybody have trouble pooping, or is that my autism?
  • Does XXX have autism? Is it the same kind as my autism?
  • Why am I so tired, is that my autism?
  • I think I'm color blind, is because of my autism?
  • Do I have a lot of autism?
At first, these questions took me off-guard and I stumbled to explain things to him. Now, I'm not surprised to find him trying to blame things on his autism (he is also blaming lots of things on his facial blindness, and we've had to explain that facial blindness only makes it difficult to recognize people - and, interestingly, cars...a fun fact found by our 14 year old that made it her mission to understand all things prosopagnosia). Some things are easy to explain: for example I told him that lots of people have belly problems but it's very common in people with autism because autism effects your nerves, and nerves control your belly. Other things are harder to explain; I really struggled to explain "how much" autism he has. 

Some things we are discovering together. He has said to me in the past that he has color blindness but I've always explained to him that he doesn't, or told him that two similar colors are hard for lots of people to distinguish. Today when he complained about it again and asked if it was his autism, my 14 year old (who wants to study genetics, by the way) found a test on-line and don't you know, he tested positive for Tritan-type color blindness, which is a loss of color discrimination for shades of blue and yellow. Huh. No, we are not taking an internet test as the final word, but we are going to investigate it further, so stay tuned.

While I wish I could say that the progress Evan has made in understanding himself has all been positive, I have to tell you the negative. It comes in the form of a quiet thought, muttered to himself, and goes like this: stupid autism. We jumped right on this, Jayme and I, and told him it's normal for people to lose attention when they are playing a game, and that it will get easier; this did little to appease him. I caught him  being negative again today, apologizing about his autism while recording his video game playing on his laptop (to a make believe audience because we don't share this content). The bad feelings about autism scare me, and is something that we are going to have to keep a close eye on. I wish with all my heart that he may never feel negativity about himself from another person, but I fear that it's only a matter of time. 

I'll end this on a positive note...I am thrilled that Evan is trying to figure himself out. We've got a long way to go, but the more he figures out the better he can help us understand him. I think he'll go on to be the adult that offers amazing insight into the life of an autistic person; in the meantime, we'll nurture him along the way as best we can and will be ever grateful for the ride. 
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Saturday, February 3, 2018

The Little Stuff

Image result for autism social skills pics

Evan had a great social skills group this past Thursday. It was so great that the facilitator came out to tell me that he's never seen Evan so open and engaged before; he was demonstrating appropriate social reciprocity with a peer and was even flexible enough to allow them to play music in the background. 

I expressed my thankfulness for the update, and explained that for 2 days Evan had been more socially engaged with the family and that Jayme and I had specifically talked about it because it was so great to see (when I picked Evan up from school on Tuesday, I asked him how it was going. He answered, "I'm going good, thanks for asking!"). I told his therapist (S) about how I describe this phenomenon as Evan's 'window being open' (https://theasdchronicles.blogspot.com/2017/03/when-windows-open.html), and S totally understood what I was talking about...I just love it when people get it.

I was super proud of Evan, and our whole ride home I thought about how I wanted to share his progress. Then, I thought about social media and what we typically see when our friends brag about their children: sports <insert any sport here>, and academic achievements top the lists. I do it too because, you know, I'm proud.

Here's what you rarely see: potty training at 6 1/2, getting fully dressed independently at age 9 (Evan's done it once, on Christmas Eve into his new pajamas), and having a 'typical' social interaction in a facilitated group. This makes me mad, and sad, and frustrated because these kids work SO hard just to be, and that should be celebrated.

I've no doubt that I had I posted what I wanted to on Facebook Thursday (YEAH -Evan had a GREAT social skills group today!!), that many people would have liked it, but the significance of that achievement would have been lost on most and that is what held me back from posting. Disability is my village, but I rarely see posts of accomplishments that I know some of these super humans have worked so hard for...HOURS, hundreds of hours of practice some of the everyday skills we take for granted take to develop. Those moments should be celebrated just as often as the goals in soccer, the honor list, the lead in the play. If we could normalize these delayed milestones, maybe our attitudes about disability (or, different abilities) would change. We are not all the same. Our strengths do not always come wrapped in cute packages of leotards and dance shoes, or tough little football helmets. 

This is how far Evan has come:

These cards were what we used with him in preschool when he would get mad or bang his head into me if someone talked to him. 

So, here it is...

YEAH!! Evan had a really good social skills group this past week, and I am SUPER PROUD!

Next time, I'm going to post it on Facebook :)

Monday, January 29, 2018

A Tale of Extremes

One night, a little more than a week ago, Evan said, "MOM, the cafeteria was so loud today. Was my volume turned up to 10 or was it just chaos?".

I wasn't sure what the reason was that made the cafe so noisy that day, but I did know that he had stopped wearing his headphones in that environment, so I advised him to take them with him the next day and wear them if needed.

The next morning, while getting him dressed, I touched his feet to remove his socks (he wears socks all the time...feet shouldn't be naked, he says). Without warning, he quickly withdrew from me and yelled, "STOP TOUCHING ME! I DO NOT LIKE IT WHEN PEOPLE TOUCH ME!!".

This response was SO out of character from him; while it's no secret that he prefers not to be touched, he had never responded to me that way in any situation. And, hello...how do you not touch someone while you are getting them dressed? He refused to get himself dressed, but kept yelling at me not to touch him. A few minutes later, while still angry and on edge, he said in a loud, mad voice, " yesterday I had my fingers in my ears because it was so loud and XXX kept tickling me and YYY was touching my neck and it made me very nervous because I got that weird feeling in my throat!".

It all made sense. When I started getting Evan dressed, he began thinking about what had happened in the cafeteria the day before and he was physically reliving the feeling of that, which caused him to yell at me. Jayme and I know that when he relives memories, not all but many, it's as if he is feeling them for the first time; this is not an atypical autism manifestation, though many fail to understand the ramifications of having a memory that works that way.

Evan remained angry with me until I put him on the bus, but thankfully had moved on by the end of the day. It took a bit longer for me to move past it, however. It rattled me. It made me scared of a behavior that I had never seen and hoped wasn't something that would last. You never know, you see, what new behaviors will stick around and what won't, so I remain attentive, and cautious, and nervous, and cross my fingers that the tough behaviors leave as quickly as they come.

2 days later I laid on the couch trying to catch a quick cat nap between weekend activities. Evan came into the room and sat next to me, pulling up a blanket and covering me at the same time. In my head, I was thinking, wait, did he just cover me with a blanket?? I stayed still, wondering what he would do next. Then, he sat back up, took some of the blanket and covered my feet (YES, he definitely deliberately covered me with the blanket), spooned into me and lay his head on my side. Oh, how I wished someone was there to take a picture so I could capture this moment, made so sweet after the bitterness 2 days before. I chanted in my head, remember this - remember this- remember this, in hopes that I could bottle up the feeling of the unconditional love I get from Evan in these stolen moments.

It is this extreme of Evan's autism that makes me so mad. The fleeting moments of love, the prolonged moments of hate. The not enough moments of the time in the middle.

Wednesday, December 6, 2017

Report Card Priorities

It's report card season, and here is what is on my mind: pancakes. Pancakes, and hash browns, and sausage. For the first time since spring of 2016, Evan has eaten something other than a bagel for lunch. This is progress.

It's not about the food choice (that I gave up caring about a long time ago), it's about the rigidity of his choice. Actually, there was no choice because there was only bagels. A bagel every. single. day.

Yes, yes, I was a kid once too and ONLY ate peanut butter on white bread every. single. day.
They were easy for me to make and a comfort food, and there was no way I was buying hot lunch. However, it was always a choice and it was never a rule; my drink would change, my snacks would change, and I'm willing to bet that there were days that I wasn't eating a peanut butter sandwich, I just don't remember.

There has been no choice for Evan; it has been his rule. There have been no negotiations. Before we moved towns, his team had been working on expanding his lunch repertoire, with some success, but when we moved that fell to the back burner and it was not a priority for me. And, so, he ate his bagel every. single. day.

What changed this week? Well, last month the school started talking about nutrition and food choices in his social skills group and in his counseling session (always in a non-pressure way, encouraging but not insisting) and clearly we are seeing the fruits of that labor; boy, doesn't that feel good. Progress where there had been none for so long.

It's been awhile since I've blogged, so you may be wondering how everything else is going? My answer is...drum roll please...well. Evan, generally, is doing very well. We've had a few hiccups here and there - some playground issues, some classroom issues - but his school team has been very responsive and open to my feedback and suggestions, and he seems to be enjoying himself.

He remains behind grade level, though his report card doesn't reflect that; you must specifically ask questions like that, or you won't be told (unless you happen to know what reading level K means, and I only know his reading level because it is a benchmark on his IEP). He got a 3 (out of 4) in all of his specialist classes, even though he hasn't been to music for SIX WEEKS; apparently you don't need to be present in class to meet academic standards in music. Clearly we take his report card with a grain of salt.

Evan currently attends OT once per week, swimming once per week, and new this fall is a social skills group (I pull him early from school, and this is why he misses music class; his music teacher has an accent that Evan can't understand, so no one has had a problem with this arrangement except for Evan, who enjoyed being able to completely escape into his own brain during the
class :).

We've had some trouble with Evan withholding urine, a problem that we haven't seen since preschool. This started the day before Thanksgiving, after two days of him not feeling well...

                                       * random thought: Evan made it TWO MONTHS into the school year                                                      without being sick - a huge milestone for him!

...and I wasn't sure if it was a sensory thing or not (sometimes bladder pressure can be soothing for kids with sensory disorders). On the Saturday after Thanksgiving we went out to breakfast and I asked Evan to pee before we left; he told me he didn't have to go and said he could go at the restaurant. Imagine my horror when, at 4:15 that afternoon he told me that I forgot to remind him to go pee and he was going for the FIRST time that day!! Ugh. Jayme and I have concluded that it is more a constipation issue than a sensory issue, and I am still having to remind him to pee; it's 5:40 pm as I am writing this and I just asked him if he had peed recently; he just went for the second time today right now. Sigh...work in progress...

Currently our other home priority is trying to wean Evan from his extreme TV addiction. It seems like an easy problem to have, but we are having a very hard time engaging him in other activities; this will be another work in progress, as he prefers social isolation to most anything else. Admittedly, I've gotten a bit lazy in engaging him (one can only take so much rejection), and I've got to step-up my effort.

We are feeling very blessed with where we are in life right now, since last year was such a struggle. This will pass, and we'll struggle again, but with every day that he grows and gains more skills we are one day closer to helping him realize his life dreams, which so far this school year have included being a husband, a professional soccer player, a SWAT team member, a mechanic, and a miner.

Never discourage anyone
who continues to make progress, 
no matter how slow.
~ Plato