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

Thursday, September 28, 2017

How Do You Keep Finding Me?

I made an interesting discovery this morning, but before I go further with that, let me first tell you about our morning school routine:

  • Evan is up at the ass-crack of dawn (sorry, but it's the truth). He keeps asking to sleep in before he goes to bed, and I keep saying, "YES, please!!!".
  • He takes himself into our TV room, shuts the door, and starts to play video games. Or, if he hears someone upstairs, he may or may not walk into the kitchen to complain that he's tired and then asks, again, to sleep in.
  • At about 7, I start trying to figure out what he'll eat for breakfast. Twice this week it was a hotdog in a bun with ketchup (hey, if it's good enough for dinner, it's good enough for breakfast).
  • At 7:20ish, he's yelling at me that he's thirsty and commands a drink. Sometimes he says, "chop, chop!"
*No, I am not making any of this up.

  • At 7:50, I say to him, "Buddy, it's time to get dressed", to which he replies, "can I have more time?". 99.9% of the time, on a school day, I say yes.
  • At 8:00, we dress him, push, carry, or pull him into the bathroom so he can pee, then catch him as he tries to escape having his teeth brushed (by me).
  • He heads upstairs (his room is on the lower level of our house), and I brush his hair, put on his shoes, and head out the door.
This process is irritatingly inflexible. Sometimes, Jayme will try to help me out and go out of order, which stresses me out because if we miss a step we may not be able to add it back in. We also cannot rush him, as that totally stresses him out. Because I have to be prepared for something to go wrong, I am rigid with the timetable in order to give us a few extra minutes so we won't miss the bus.

For the past week or so, when I head into the TV room to get Evan dressed, I have found him in the same spot on the floor, which is out of sight of the door. Every time he says, "oh, you found me", and I say (with a chuckle), "you are in the same spot as always, silly". 

This morning he said, "Agh! How do you keep finding me?" I started to laugh, but then stopped...
"Evan", I said, "do you think I don't know where you are because you can't see me?".
"Ya", he said, "that's how it works!!".

Huh.
(Seems this is a common sentiment of mine lately)

So, there's this thing called Theory of Mind; I've mentioned it before in blogs, and essentially it's the ability to understand that people have their own thoughts, beliefs, and actions which can be different from your own. Theory of mind is often impaired or delayed in kids with autism for a number of reasons, including delayed speech acquisition and gaps in cognitive function. To teach theory of mind to kids who don't develop it autonomously, you literally have to model thought process (i.e. by talking out loud the thinking we usually do in our heads when we make observations and decisions in different situations). We worked a lot on this with an excellent therapist when Evan was in preschool. 

I though Evan had a lot of it figured out. Sure, I know he has gaps in his theory of mind, which typically develops between the ages of 2-7, but I thought for sure he had figured out that just because he doesn't see someone doesn't mean that they don't know where he is. This particular skill should have definitely imprinted itself by now (it' hard to pin down the exact age when this should happen, but I saw some references to the 4-5 year age range in some literature). 

I'm curious...if you think about this with your own children...do you any of you have 8-9 year olds that haven't figure this out yet?

Clearly, this gap will cause a disadvantage at hide and seek, but at what else, I wonder?

Hmmm....food for thought...

Friday, September 22, 2017

Prosopagnosia - Ever Heard of It?

Prosopagnosia...I have a hard time even typing the word...is commonly called facial blindness, and I think Evan has it. It's actually not common at all, affecting only a small percentage of the population. I'm not sure how I even first heard of it, but something happened at school pick-up this spring that caused me pause and put prosopagnosia officially on my radar.

Here was the scenario: Evan and I saw one of his old behavior therapists at school pick up last June. This was someone who was in our house probably 6 hours a week for over a year, or, in other words, someone who was very familiar to us. I said hello to her, but Evan didn't say much (which is not unusual). When we got in the car, we had the following conversation:

Me: Wow, that was neat that we got to see A.
Evan: She must have changed her style.
Me: Oh, I didn't notice that; I recognized her by her face.
Evan: I don't recognize people by their faces.
Me: How do you recognize people? (I was thinking that he was going to tell me it was by their                  clothes, based on his comment about her fashion)
Evan: I recognize people by their voices.

This comment completely stunned and fascinated me, but it was the first I ever heard him say something like that, so I just filed that away in my brain as one of the many strange things that pop up that I can't explain (like the time when he was a pre-schooler and he was crying that his eyes hurt, but it was so random and strange; I could never figure out what was happening to him that day).

Maybe a week goes by, two at the most, and I was sitting at my desk (which is really a card table in the kitchen because we are short on office space) and Evan walks by and looks at a graduation card with a picture of his cousin - a cousin that he has seen thousands of times in his life, and who we had seen just three days before this event. This was what was said:

Evan: Is that your dead friend?
Me: (thinking, what the hell?) No, that is AF.
Evan: Oh, I couldn't recognize her! (as he is laughing at himself)
Me: How do you recognize people?
Evan: By their voices.

At this point, I shared my suspicions with Jayme and started doing some research.  There is, in fact, a developmental prosopagnosia (versus developing it after a brain trauma), and at least one study has found it to be highly heritable and theorized it to be caused by a defect in a single dominant gene. Interestingly, you can read about anecdotal findings in some autism literature and social media sites, but that was something I was never dialed into until I looked. Because there is not much I can do with this information, I internally flagged this to be brought up at Evan's next neurology appointment.

Mid-summer, though, we ran into his 2nd grade teacher at Target, and I could tell he didn't recognize her. Frankly, the fact that he wouldn't recognize her didn't even cross my mind, despite the two incidents that I wrote about previously, until we were in the moment and he became his very withdrawn self.  Later, I asked him if he recognized her and he said, "not at first because she had a cap on".

So, now I started thinking about the social impacts that facial blindness could cause, and was wondering if this could explain some of his weird quirks, like how he doesn't like to see Jayme without his glasses on, or doesn't like it when I wear a hat. Imagine all the people you see in a day and how stressful that would be if you couldn't tell who they were until they talked to you, including your own family?

Last week I went to pick Evan up at school before his weekly OT appointment. The pick up procedure is standard and he's done it a few times already; it's a drive-by situation, so the child watches for your car and then gets in when you pull up in front of the line. I hadn't showered that day (real life problems) and it was sunny, so I had on a hat and sunglasses. I could see that he recognized my car, but even after I waived at him he wouldn't come to it; I rolled down the window and waived, but he still hesitated. Finally, I took off  my sunglasses and yelled, "HEY, Buddy!", and then you could see it clicked for him - THAT'S my mom. On the way home I asked him if he had a hard time recognizing me with a hat on, and he said, "HECK, YA!!".

Huh. Fascinating, isn't it?

What now? Well, I can try to get him formally diagnosed, though it seems that there is some  unreliability with the testing; I still need to talk to his neurologist and get her take on it too. For now, the "treatment" is all social modification, or, in other words, if someone is coming up to him I should say things like, "hey, Evan, looks it's XXX". I need to discuss this with the school personnel so they can do the same, and I'll do just that in our first meeting next week. There are several strategies people with this disorder use, with the most popular (anecdotally) being voice recognition (use of clothing and shoes as indicators of who is in front of you can be unreliable for obvious reasons). It seems that Evan is doing a fine job of overcoming this obstacle on his own, but I think it plays significantly into his social comfort level; in fact, as I'm writing this, I always wondered why he would be so taken aback if we met a peer outside of school unexpectedly, like in the grocery store (now, he rarely goes out with me, so we run into this problem less often) and facial blindness could explain it.

I just love trying to figure out his brain, truly. It's so amazing to me. I only figured this facial blindness out because he could verbalize it for me, but what about all those people who can't verbalize it? Could this be more common than we think? Could we significantly alleviate social anxiety in a slew of people by just using some verbal prompting? I live for this stuff...for the little clues that help me understand why Evan is the way he is, and what his perceptions are. Why aren't more people curious about this? Why aren't we working harder as a society and within our educational system to learn about things like this and how they impact learning, and relationships, and living.


“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” 
― Audre LordeOur Dead Behind Us: Poems

Tuesday, August 29, 2017

Ramblings on a First Day of School Eve

I'm sad. I can't believe the summer went so fast, and, for the first time in a very long time, I'm sorry to send 2 of my 3 off to school tomorrow. This summer was, you see, the best one I've had since Evan was 1 1/2 years old, and it wasn't long enough. We had some trouble, but overall the theme of the summer was the same as my last blog: the Best. Summer. Ever.

We saw such milestones this summer. Not in speech, or coordination, or strength, but in happiness, in risk-taking, in socialization. The summer DID go horribly right, and now my stomach hurts and I'm not sleeping because I'm worried about what comes next.

Some of the best news of the summer was that Evan learned to swim underwater and to jump in the deep end (this skill is less than a week old). These were HUGE accomplishments, because his fear of the water would literally paralyze him. From a safety perspective, we had to push him continually through his discomfort, and we couldn't have done this without his swim instructor from Swim Angelfish; if you aren't familiar with this organization and are a parent of a child with special needs, look them up - you won't be sorry. Now that he can jump in over his head and successfully swim, we will put him in regular clothes and shoes to be sure he can still do it; this is an incredibly important skill, which may seem silly to some, but the change in sensory input and extra weight of the clothing could negate Evan's ability to safely get himself out of a dangerous situation. Anyway, here is a picture of him swimming underwater:


We didn't do as many things as I would have liked this summer (my reference is the days when he was little, and I could drag him anywhere with the girls without complaint...it wasn't easy, but he was little and so it was doable), but we did what he could handle; unfortunately, that meant skipping some of the things on my girls' summer bucket list, like the beach (which he can't tolerate because of the sand). He did tolerate a trip yesterday to the zoo, an item on his older sister's bucket list and he did very well. He does continue to fatigue quite easily, and I do have to carry him on occasion; he is getting so tall that I'm not sure how long I can continue to do this, but on the bright side I find that if he is wearing his headphones, I don't get any disapproving stares from passerby's, which I appreciate.



A few more random pics from our summer:

Evan not mini-golfing.


Evan not eating ice cream with everyone else.


Evan kayaking!!!

So, with such a big summer, am I premature in my worry for the school year? Maybe. However, Evan has mentioned some things that have raised my haunches, including the fact that his stomach hurt on his recent tour of the school (and his only question was where the nurses office was located), that he only trusts his school "2%", and that he's not sure he's going to eat because "I only trust the school 2%". Here's to hoping that I'm pleasantly surprised, again.

Farewell, summer of 2017 - it's been a good one.

Tuesday, August 8, 2017

Skateboard Obsession, Day 1


Real kid practice needed a little intervention today in the form of bribery. After returning to our house from a trip out of state, Evan retreated to our TV room from which he has barely reemerged. By 8 this morning, he had logged over two hours of video gaming and TV watching (he watches others play video games, so I'm not even sure how to categorize that), and had said no to every alternative activity I offered. No to anything inside our house (playing, coloring, cooking, swimming), no to anything outside our house (movies, indoor play place, stores). Yesterday I had to resort to the "you're going to summer school if you don't leave the house" line, which worked like a charm, but today I was trying to make the point that he can't spend his whole day in front of the TV or computer even if we stay home. The idea of limited screen time grew more and more caustic to him, but LUCKY ME - I was out running when he really broke down, so Dad had to work through the roughest part of his tantrum; during this time, Evan told Jayme that he's always wanted to learn to skateboard and so Jayme suggested that finding a skateboard could be something we do today.

I'm not sure how Evan settled on skateboarding, but I think it was from a video game because he was using terms like "pop a wheelie", which is something we don't say in normal conversation here. Skateboarding did the trick, though, and he happily left the house. Several stores later, and VOILA ~ our skater dude was born.

Evan practiced for a long time in our driveway. A really long time...over an hour, which by Evan's standards, for physical activity at one task, is huge and by the time he was done he was like a limp noodle when I was taking his pads off. He talked about practicing tomorrow morning (so he could play video games after), and that his goal is to do turns and ramps. I'm not sure he'll actually stick with it, but the $20 skateboard and $25 pads were definitely worth the conversation and activity that I got this afternoon. 

I'll admit that one of my limitations as an autism parent is my ability to stay motivated in the face of Evan's restricted interests. With my girls, there was always something we could do together (baking, coloring, scrapbooking, trips to the zoo, etc.), the biggest hurdle being my constant exhaustion and lack of creativity. With Evan, however, there is little that I can engage him in; Jayme has a much better chance of getting his interest due to their shared love of roughhousing, video games, Star Wars, and superheros. On the rare occasion that I can get him interested in something, like Legos, it's very short lived (he'll build the Lego guys, then I spend hours, alone, building the rest). I tend to really feed into Evan's lack of motivation with social activities, even within our own home,  and do less with him, and less with the girls, which makes me feel guilty; it's a cycle that is quite hard for me to break. In fact, I feel like there are some days where I've spent less than 30 minutes with Evan in the same space as me for the entire day!! That isn't his fault, it's mine. It's an easy trap to fall into...he's got an electronic babysitter and that frees me up to do something else, or nothing at all. 

Anyway, I'm hoping that Evan's skateboarding interest will last for at least a few days. I dream of being that parent with boarding ramps in my driveway. Drumming is the other thing he's interested in right now, so if I can just push that one off for a little bit, my waning hearing will be thankful.


Friday, July 21, 2017

The Wonderfully Boring Dog Days of Summer

It's been awhile since I last blogged, so it's time to catch everyone up! This summer we are doing NOTHING, but to understand why, let's back up to spring 2017...

     ...in April of 2017, Evan started hearing voices in his head. His episodes were intermittent, the worst one was in early May and lasted for about 45 minutes to an hour; if you've seen someone in a mental health crisis, I don't need to tell you how scary it is. Evan was holding his head in pain, rocking back and forth, and begging me to help him get the voices out of his head. He was 7 at the time.

His symptoms were clinically categorized as hallucinations due to intense emotions that he was unable to process at the time; he was, fortunately, cleared of any organic psychiatric disorders.

At the time, my gut told me that he was overloaded - he was doing a lot of therapy (5-6 days per week), and the school curriculum was ramping up - so I cut back on all obligations outside of school and let him take a break. This did the trick; the voices went away and have never returned. During the summer, we slowly added back in home ABA, speech and occupational therapy, and he tolerated it fairly well, though it became quite clear that our home ABA was reaching a point of ineffectiveness and we ultimately decided to discontinue that service. We then headed into the fall with just speech and occupational therapy (and weekend swim), which went very well until early spring, when he started  to struggle again with his schedule.

I could see the path we were headed down, and it wasn't good. It was the precursor of what had happened the previous year, and I desperately didn't want to go there again. This, by the way, is a terrible position to be in...you know your child needs intervention (and school), yet sending him causes such mental distress that it causes more harm than good...how do you balance this? I don't know. What I did know was that it was time for another break, so in March of this year I cut back again on all his outside services.

Then, April vacation came. You know what we did?
                                                                                                NOTHING
And you know what happened?
                                                                                    SOMETHING AMAZING

Evan played, with toys, for the first time in years. And, I remember thinking, he's acting like a regular kid.

So, summer schedules came out for school, speech, and OT and I passed on everything. He needs a break. I need a break. The family needs a break. We are on a break.

Now, just because I wish it, doesn't mean that autism will take a break too. Nope, that little sucker is holding on nice and tight. If given the choice, Evan would stay in his pajamas and in front of the TV or video games for the entire day; I'd like to say that I don't allow this to happen, but I do. I allow it to happen because it gives him the downtime that he needs to tolerate what I'm calling Regular Kid Practice, and Regular Kid Practice is what we are doing this summer. I've not allowed Evan to stay home more than 1-2 days in a row; he knows he needs to leave the house to do something fun, and he has to stay somewhat active. We've had a couple of major meltdowns, but overall, we are having the Best. Summer. Ever.

Here is a little pictorial journey of some of our practice:

Week one of summer vacation, we went to the science museum 
(because astronaut ice cream is awesome).
Evan is practicing being an exhibit in this picture; though he ultimately gave up
because staying still that long is "way too exhausting".


Legoland Discovery Center happened during week two of summer vacation; 
this is Evan's super video game player dude.


It's not all peaches and cream, of course, so here's a pic of Evan sleeping off a tantrum.


Most days, Evan's exercise is swimming! This is a pic of him working up the nerve
to jump. He can swim now, but he can't jump in the deep end (he couldn't jump in the shallow
end either until just this week, when he finally tried without a noodle, though his head does
not go under water; once he realized he could do it, he didn't stop :).


Last week Evan had two playdates, and while one ended with him secluded in our room
while his friend sat outside with the rest of us, two playdates in one week
is huge news. We also went out to dinner as a family of 5, which hasn't happened
for at least 2 months, possibly more (no one could remember the last time).

This week, week four of vacation, our big outing was pottery; thank goodness for the clay TARDIS!


We are just about half way through summer, and I can't tell you what happens next. School, of course, which is always a tough transition, but then...?? I had a great discussion with Evan's neurologist about when the right time is to accept Evan for who he is and just let him be a regular kid - when can I stop dragging him all over kingdom come? She had great perspective and advised me to consider what a "regular kid" is; is it someone who is actively participates in life, who seeks relationships and interacts with the world around him, or is it someone who secludes himself, who would rather be alone more often then not? The answer, of course, is not what we see with Evan, hence the summer of Regular Kid Practice. However, knowing that Evan is struggling with his current course of treatments, the doctor did suggest that I change my focus with him and find him a social skills group that matched his interests; this is something that I've known I need to do, but didn't know how to fit it in his schedule. I think I need to be more flexible and willing to prioritize his treatment as he changes and grows, and know that  (this is what is super hard for me) we can't do it all.

During our first week of vacation, I posted a picture of Evan on Facebook with my intent to play hooky from all things school and therapy related, and made a comment about how things could go horribly wrong. Things still could go horribly wrong, and it can happen in a heartbeat (I've had a brief glimpse of this with the tantrums he's had so far). One friend, though, commented at the time that while yes, things could go horribly wrong, they could go horribly right too. The juxtaposition of those words are so beautiful to me...yes, things COULD go horribly right; I dare say they are, and isn't that a wonderful, horribly wonderful thing.

**Literally, as I was finishing the last sentence, Evan left the TV room and declared that he was putting himself to bed. And, he did.

Tuesday, May 30, 2017

A Cemetery Visit

There is a cemetery in our sleepy little town that Evan has been DYING to visit (his word, not mine). Today, with a little extra time on our hands after an early dismissal from school for a doctors appointment, I finally decided to stop.

The pictures relay the sentiment,



but they don't tell the story.

I'm not sure I can adequately tell the story either, as he was non-stop chatting about death, and dead people, and standing on dead people, and wondering about the current size of the baby that died in 1986. We discussed how married people are often buried together, and marveled over the number of military veterans and local firefighters. We talked about where I want to be buried, and how Evan wants to be burned, and he wondered where people are burned in this cemetery as he couldn't see any rules that said you cannot burn people. Yes, think of Darth Vader in Star Wars...this is the inspiration for Evan's cremation request, so I had to tell him that usually people are not burned out in the open, which disappointed him greatly. He also found some burial crypts in a small  hillside, which he thought were cool and caused him to re-think his cremation plans; I just can't decide, he told me with concern as we were leaving.

Once in the car, I asked him how he liked the cemetery. It was AWESOME, was how he replied.

While I'm happy that he enjoyed his visit with our local deceased, and I loved the quality time we spent in conversation (and watching him so closely inspect the stones and read off names), I was struck with sadness on our way home - made worse, I suppose, by the conversation I had just had with his neurologist who had helped me put in perspective what a "normal childhood" is and how to prioritize Evan's intervention...
                                                  ...here is my child, whose idea of an awesome adventure is walking through a cemetery, who will pass on playing with his peers 9 times out of 10 (and his family 8 times out of 10), but will happily commune with dead people. There are a thousand memes about the greatness of solitude, but only quote that captured a slice of what I'm feeling:
"One can acquire everything in solitude except character."
-Stendhal
Solitude, to the extent that Evan seeks it, is not normal in childhood. How do kids learn to navigate the complexities of adult relationships? By engaging with their peers and not, as it turns out, with excessive time spent alone or with the dead. I know this, of course, but bridging that gap is a struggle.

So, stay tuned as I navigate a shift in our focus (because, I've learned the hard way that you - Evan, me, the family - can't do it all and there will be no return to the 5-6 days per week of therapy that we slowly backed down from, but the 0 days per week that we are currently at is not sustainable either). In the meantime, play dates at the cemetery will be welcomed ;)

Tuesday, May 9, 2017

Can We Ever Catch a Break?

Gosh, I don't know how other autism parents feel, but I'm feeling like we can never catch a break over here. Many don't realize how many body systems are affected by autism...if it's not sleep trouble, it's gut trouble, or it's being sick all the time, or it's managing anxiety, etc., etc. (and sometimes it's everything, all at once), so it's rare that we get more than a stretch of a couple of weeks of peace (or, in our case, everyone in school all day for a full week).

We survived April, which I dubbed "the month of irrational ridiculousness" for all the crazy shit that Evan came up with. We started last month with the great egg sandwich debacle, which I last blogged about, and ended the month with the me throwing away dirty pretzels and Evan screaming, "how can you do this to me! I just got off the bus and THIS is how you treat me?!!". A monthly theme for him in April was his big sister's "stench", which sounds funny but gets old fast, especially when he refused to be in the same room with her and often lost his appetite just by seeing her.

Sigh...

So, enter May and seasonal allergies galore. Because, after all, it's always something. Evan has very bad allergies and has had irritated eyes for weeks. Unfortunately, he somehow ended up with a large corneal abrasion on his left eye and is now even more miserable. Poor kid...imagine a sensory processing disorder on top of itchy eyes, and I guess it's not too hard to figure out how this happened.

Here is a pic of our trip to the doctor today:

I had to call in my Mother-in-law to help get my oldest to the orthodontist today, then had to dismiss my middle one early from school in order to get her to dance early so I could get Evan to his appointment. Seriously, it's comical over here trying to manage, and that, I know, everyone with kids can appreciate.

Relentless Forward Progress. My motto, you might remember from many blogs ago. Keep moving forward, until the next hiccup...then move forward again.

Thursday, April 6, 2017

Oh, For The Love of Egg Sandwiches

Today was an early release school day for my elementary kids, so we decided to go to Sky Zone (Evan's choice). The last time we went, it ended terribly, but if he was ready for another try then so was I. He didn't want to invite a friend, but had a great time jumping with me tagging along; it was a great success.

Evan also needed a haircut, so we had planned ahead of time to get that done after Sky Zone. I was ready to cancel this at a moment's notice because I don't think I've ever successfully navigated more than one activity in a single outing (with the exception of getting ice cream, and even then more times than not, Evan is in the car while I grab whatever he has requested). But, don't you know, he managed a haircut too.

In fact, I was so impressed with how well our afternoon had gone that I had the thought that I should blog about it; it was, after all, a huge accomplishment to go right from school to lunch, to Sky Zone, to a short car wait while his sister shopped with a friend at the Dollar Tree, to a haircut (in pouring rain and subsequent wet pants).

And, of course, then the shit hit the fan.

Sigh...

It started with Evan smelling a restaurant outside of Snip-Its that reminded him of egg sandwiches. Then he wanted an egg sandwich. An egg sandwich with bacon. On bread. I can take you to Dunkin' Donuts, I told him, but I think they serve it on an english muffin.

NOT AN ENGLISH MUFFIN, he yelled, A REGULAR EGG SANDWICH!!

I explained that they don't use bread at Dunkin Donuts, but he could probably get it on a croissant.

NOT ON A CROISSANT!! A REGULAR EGG SANDWICH! 

On bread.

Can I make it at home? I just don't have bacon. NO
I can stop and buy bacon? NO

I WANT AN EGG SANDWICH LIKE THEY HAVE IN CAMDEN, MAINE. NO, NOT IN CAMDEN, MAINE...IN CAMDEN.

So, at this point, he is intermittently screaming and hitting the car window. Thank goodness Shayna's friend has seen this before (it's always tough for me to have the girl's friends in the car during a tantrum; it's hard for me to process so I can only imagine what they think, though this one friend has been around a long time, so she's seen and heard a lot).

He ended up falling asleep in the car for about 2 minutes, but as soon as we got home and he woke up, the tantrum continued. He destroyed his room and wailed as if something actually bad had happened, crying for an egg sandwich.

The first thing I did was warm up some coffee. Eventually, I went to him where I learned two things:
1. Camden, Maine and Camden are two different places. Camden actually means Farmington.
     - okay, whatever, I said to myself., that is SO not the point right now.
And, here is the kicker....
2. He's never even had an egg sandwich before!!! He has some picture in his mind of an egg sandwich in a restaurant in Camden, which is actually Farmington!

THIS IS SO IRRATIONAL! What messed up nerve signal is making him want an egg sandwich that he's never had, 4 hours away in Maine?!

Deep breath....
Evan is fine now; he had dinner and is playing his imagination (after I put his bed back together, that is). He may be fine, but I am not. I sometimes have a hard time letting these episodes go, though writing this all out helps. Our morning, by the way, was bad too because he got mad at me after I sternly told him it wasn't funny or nice to fart in my face.

O.k., now I'm laughing. It actually IS a little a bit funny (and don't judge - I was trying not to laugh when he was screaming for an egg sandwich from Camden). Seriously, this is a day in the life...
                                       


Saturday, March 18, 2017

When The Windows Open

I've seen this pattern of behavior over the years with Evan, something I describe as "the window of his brain has opened" and we get to see inklings of a normal little boy. What is normal, anyway, you might ask...but, trust me if you don't know this phenomenon from personal experience...it's like the world comes into focus for him - there is language and conversation, and he's engaged in the world (our house) around him and not locked on his own private island.

This window opened for Evan Thursday afternoon after school and I knew it immediately. The moment the window cracked, it could have slammed shut again quite easily because he came off the school bus in tears (the noise and chaos is getting to him, though, frankly, I'm surprised he's lasted this long); I reassured him that I could drive him to school next week and reminded him that he didn't have school on Friday due to some testing he needed. From there I jumped right in to talking about a leprechaun trap for St. Patrick's Day, and, that was it - I was able to prop open that window long enough for him to take over.

The afternoon was spent building a leprechaun trap, and dinner...well, dinner was spent at the table sitting with the family, eating what the family was eating, and TALKING. I can count on one hand the number of times he has sat at the dinner table in the last 8 months with the family. We talked about gym class, and how it's his favorite special, but how he doesn't like "unexpected behavior" from his peers who, on this day, were super excited about playing cops and robbers and were acting a little crazy. You know how you can tell a kid who gets social skills teaching? They say things like "unexpected behavior" and "flexible thinking"as part of their normal vocabulary.

The window remained open on Friday morning, probably helped in part by the night time appearance of a gnome left by the leprechaun. His morning testing left him tired, but he had several hours in the afternoon of quiet, alone time and was right back into being engaged with the family by the late afternoon. Unfortunately, my middle daughter got very sick during this time; however, instead of Evan isolating himself  (which, if I wasn't the Mom, that is what I would have done), he became a secret agent spy, complete with a license and rule book, and traveled stealthily throughout the house in an effort to maintain quiet and calm. As we approached bedtime, he brushed his own teeth (at 8 years old, this is still something we usually do for him), fixed his bed covers and offered to tuck himself in. This morning, he even asked if it was time for his sister to take some medicine; "is she going to sleep all day?",  he asked. "She needs some medicine." He picked a great time to open his mind, this sweet, sweet boy.

Soon, the window will close. It always does. He will become aloof and belligerent. We will need to dress him and brush his teeth. I will have to carry him to the car because he won't leave the house. He will tell me that I am the worst mother ever and that school is terrible. We will miss the boy that we know is in there, and long for the window to open and let him out again. We will be sad because that happy boy is so close. But, we will love him anyway...we will always, always love him, and wait patiently for him to love us back.

Tuesday, February 7, 2017

Friend or Foe, Part Three

I've delayed writing this piece, I think hoping it was my final installment of the 'Friend or Foe' debate. Soon after I published Part Two, the school set to work identifying the child on the bus that was talking to Evan and was able to establish that this child was just trying to be his friend but had some social awkwardness of his own.

It was the best possible outcome, and I was able to tell Evan that the boy was trying to be his friend and that it was o.k. to talk to him.

"What if I don't want to be his friend?", Evan asked.
"Then you don't have to be his friend.", was my reply.

The boy had been asked to give Evan some space, and so it seemed that the following couple of weeks went by without incident.

Until yesterday. When I had just been thinking that I really needed to follow up with the bus story, lest people be losing sleep over the outcome. I guess this was the hiccup I had been waiting for...

...Evan got off the bus and told me that the boy had passed him and said, "why are you wearing that headphones?", and touched/pushed on his headphones. I sent an immediate email went out to the school and they are looking into the matter.

You might be wondering why the school is being so responsive to my complaints about a (maybe) problem?  Well, they have to be. Thankfully we live in a state where anti-bullying efforts for kids with autism is written into state law. The Anti-Bullying bill was signed in 2010, and according to the Mass Advocates for Children, who sum it up nicely,
"the law ensures that IEP teams address bullying of children on the autism spectrum,  specifically focusing on the skills necessary to help individual children avoid and respond to  bullying, harassment, or teasing."

My mind is too crazy right now to write anything better than this (I'm thinking about the piece I want to publish tomorrow, but needed to get this off my plate so I could move on), so if you HAVE been losing sleep because you didn't know what was happening on the bus, please sleep easy tonight knowing that I'm plugging along, that I'm listening to what Evan is telling me, and that I am not letting the school off the hook on this issue.

Sunday, January 15, 2017

Friend or Foe, Part Two

I've had a couple of people ask how the bus situation is going, so here is a little update:
I didn't actually get any new information until Friday; Evan reported that on Tues or Wed, he did not see the boy on the bus, and Thursday I picked him up early as he had a really bad headache. On Friday, he got off the bus and told me that the boy, again, said something about his headphones but he wasn't sure what was said or if it was mean or nice.

After some more pointed questions, I was able to clarify that the boy speaks to Evan as he is walking down the isle to get to a seat somewhere behind where Evan sits. This totally cleared up for me the confusion I had when, on Monday, Evan told me that he can't see the boy but knows the boy is speaking to him because "he is looking straight at me and I am looking straight at him" - the boy looks and speaks to him as he walks by, but then Evan can't see him.

In light of this new information, I am not feeling like this is a friendly situation. This boy walks by Evan, repeatedly mentions his headphones and says things like, "do you know what 1+1 is?", and Evan is unsure of and uncomfortable with the situation. Raises some red flags, does it not?

I've asked that the school put an adult on the bus so that Evan can point out this child. Yes, this will draw more attention to Evan, and yes, the boy can spin the situation any way he wants once finally identified and  could say that he is just being friendly. Evan is not a credible witness, and by saying that I hope I shed some light on how difficult it is to protect a child like him against bullying - he is not sure what is being said to him, both because he is wearing headphones and he has a language disorder,  and he does not understand social convention...think about how easy it would be for someone to argue that Evan heard the information wrong and misread social cues. And, maybe he did!

The truth is, I don't know if he's misread any of this, and when I don't know the answer to a situation with him, I treat the problem with a "the glass is half empty" attitude. I have to, because if I don't - if act as if everything is always "fine" - I will never understand what is actually happening in his life. At a bare minimum, what this current incident has told me is, if Evan HAS misread the situation, then we've identified a major gap in his social skills and he needs specific training in this area of his life; this is the best case scenario and comes just in time for me to discuss with the school at his upcoming IEP meeting next week. The worst case scenario, is, of course, that for months this boy has been bullying Evan, in which case I'm incredibly thankful that the headphones and Evan's lack of understanding of social cues has protected him from the brunt of the damage months of bullying can cause.

Let's hope that next week brings continued clarity to this problem and a peaceful resolution for Evan.

Monday, January 9, 2017

Friend or Foe

Friend or foe, how do you know?

When I considered writing this post, I thought it would be at the end of the story. However, after some reflection, it occurred to me that the problem we are currently facing would actually be great in real time so that I could, hopefully, impart some of the challenges we face as they are happening.

Here goes...

Evan got off the bus today and urgently had this conversation with me (it is the approximate dialogue):
Evan: Mom, there is a boy on the bus and he keeps talking to me and making noises and I don't know what he is saying, except one time he asked me what is 1 + 1 but I don't talk to him because I don't know him except I did answer what is 1 + 1.
Me: What kind of noises is he making?
Evan: I don't know, but he talks too but I don't know what he is saying.
Me: How do you know he is talking to you?
Evan: Well, he is looking at me and I am looking back at him.
Me: Do you think he is being mean or do you think he is trying to be your friend.
Evan: I don't know.
Me: Is he an older boy or is he from your school?
Evan: He is a bigger kid. I didn't tell you because I tried to wait another day so that I could figure out what he was saying but I still couldn't figure it out.

Now, let me put in some additional context...we started this conversation with Evan standing outside of my car. He wanted to start talking before he got in, and so he stood at my window in 15 degree weather and kept talking. I wish I could capture his tone, but his voice rose during the "but I don't KNOW him" part, and his speech was rushed and a bit worried sounding. This is what prompted me to ask if Evan thought the boy was being mean or being a friend, and the "I don't know" answer was enough to convince me that I think Evan might be worried that this boy is, in fact, being mean but that he is unsure about it.

Evan rides the bus with his sister, and they sit together in the morning. In the afternoon they have a different driver and the kids are seated by grade, so Shayna does not sit near him and has no knowledge of any situation on the bus.

Getting additional information out of Evan is extremely difficult. Here is part of a later conversation:
Me: Evan, does the boy sit behind you?
Evan: Yes.
Me: Can you see him?
Evan: No.
Me: How do you know he is talking to you?
Evan: It's pretty obvious because he is looking at me and I am looking at him.

Hmm....o.k....

Me: Do any of the friends that you sit with hear him?
Evan: Well, I guess.
Me: Who do you sit with? Do you think they could help us figure out what the boy is saying?
Evan: Well, I mostly sit with girls and they are busy doing their own thing.

Shayna added that when she gets on the bus in the afternoon and walks by him, he is never interacting with any peers.

Me: Evan, has the boy been talking to you for a long time or a short time?
Evan: Umm...
Me: Did he start talking to you before Christmas?
Evan: Yes, before Christmas.
Me: Did it happen before Thanksgiving?
Evan: Yes, before Thanksgiving.
Me: Before Halloween?
Evan: Yes, before Halloween.
Me: So this has been  happening for a long time?
Evan: Yes.

So, here are the two scenarios that I am dealing with: 1.) this boy is actually trying to be Evan's friend but Evan's social skills are not generalizing to this situation and he is not sure what to do, and that is causing him anxiety, OR 2.) this boy is bullying him and Evan is not really understanding what the boy is doing or saying and that is causing him anxiety. Either way, he knows enough to be uncomfortable with the situation. In the best case scenario, we've identified a significant gap in his social skills and specific social training needs to be started to address friendship building on the bus with older kids. However, Evan has never had a problem being a friend with an older child that shows him genuine interest and who doesn't mind carrying the conversation or play.

The worst case scenario, though, is that Evan is being bullied and that other kids are allowing it to happen. This, of course, is what has me worried.

What do we do now? Several emails have already been sent to the school personnel outlining the conversation I had with Evan and my concerns. The difficult part is getting accurate information; if asked the correct way, I think we can get good information out of Evan, but getting the real time feel for what is actually happening on the bus is going to be very difficult. My first line of defense is to put Shayna into PI mode and have her gather as much intel as she can. I have specifically asked her to keep her eyes on Evan and his surrounding seat mates tomorrow as best she can. The school will also start poking around on their end to see if they can get any additional information.

I hope I've captured some of the struggle that is happening here. We've got a child with language disorder that doesn't understand social norms and we've somehow got to figure out how to piece this puzzle together and help him. This struggle is not new, it's just in a different environment than we've encountered before. The day is coming when Evan will face tried and true bullying. Is that day here? Ugh, I hope not. I really, really hope not. I'm incredibly thankful for the language he does have, and for trusting his gut enough to (finally) tell me that something is off...the clock is ticking, though, because if I don't help him in a timely and effective manner then the takeaway for him might be that telling me doesn't make any difference.

Stay tuned for how this plays out...




Sunday, January 8, 2017

Compassion: Lily's Perspective

Lily recently entered, and won, a school writing contest and with her permission, I am sharing it here. I'm going to keep my thoughts out of this blog, though after you read her words you will probably understand that I have both a lot, and nothing, to write. I'm choosing nothing so that her powerful voice can speak for itself.

Grab you hankies...

We were sitting at the table. I had no idea what was I was about to be told. Something that would change my life, maybe for the worse, maybe for the better. It’s all about perspective. That day I learned that my little brother has autism, a neurological disorder that affects the way a person learns. I feel compassion for  my brother.
My brother Evan has gone through a lot. Although he has never needed surgery or anything like that he has gone through many hours of therapy, which he hates with a passion. My heart reaches out to Evan. He has to do hours of therapy he hates just to live a  normal life. He will always be effected by something he does not deserve and cannot help.
There are many things I can do to help Evan. I have taken on the project of selling puzzle piece shaped crayons to raise money for autism. I feel like Evan’s life could be improved. Although he does not suffer, many things could make his life easier. I help fund research to help Evan find relief from some struggles. Other ways I help my brother are raising awareness among both children and adults and wearing an autism pin every day to show my support.
Although the dictionary defines compassion as “a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering” I believe that compassion is really the feeling of great sympathy towards others accompanied by the desire to give them a better quality of life. My brother does not suffer but I do everything in my power to make life easier for him. Your compassion that you feel towards another is a feeling that cuts deep into your soul and makes you feel like something must be done. Its an emotion that sparks protectiveness and possessiveness when it is felt deeply. Not deeply like a wounded animal, deeply like a loved one.
Four years ago I was sitting at a table not fully understanding what was going on. Now I have a burning desire to help my brother. I would trade places with him in a heartbeat to give him an easier life. That is the true meaning of compassion.   
-Lily



"If you ever wonder how to treat a child with autism, look at their siblings. They will show you."