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... 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 know your child needs intervention (and school), yet sending him causes such mental distress that it causes more harm than 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.