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?
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."
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.


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.


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.


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


On bread.

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


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.