All About School

On the school playground
in September
Usually, I update Ethan's blog when we're in the middle of a thing.  So, no news  means no drama.  Okay, that's kind of a relative term for Ethan, but it's been mostly true for the last six months.  There's nothing huge happening now.  With the end of the school year a couple of days ago, this seems like a good time to recap Ethan's school year and take a look at how he's doing today.

This year has been all about school.  Everything we've been doing has been about helping Ethan be successful there.  Ethan's made good progress, but it's been a challenging year.  We've been juggling teacher and staff education. We've been trying to gently stretch Ethan behaviorally and environmentally into school.  And we've struggled with the fact, that in some ways, Ethan's still too twitchy and hyper-reactive to allow even specially trained staff to work with him.  Through it all, we've been trying to cope with the fact that Ethan's sleep schedule is still in the toilet.  Many days, the planets just weren't aligned and he fell asleep before going to school or after he got there.

When we pulled Ethan out of kindergarten last year, one of our primary goals was to learn to understand Ethan's behaviors and triggers, to finally listen to what he was trying to tell us, so that we didn't make the same mistakes with  him again.  We've learned a lot about how to support Ethan and how to understand and work with trauma victims in general.  One thing that was never an option was just dropping off Ethan at school and trusting that it would all work out.  Ethan wasn't ready for them and they weren't ready for Ethan.
Asleep in his chair
at school in October

When the school year started in September, I began reintroducing Ethan to school by taking him to the playground, so he could join his class when they went to recess.  After a break for Ethan's spine surgery, we continued that until about the end of October.  Then we started going inside with the class for snack time.  Then it was playground, snack time and a work group.  For less structured activities like P.E. or recess, I was working with him directly.  During class time, the teacher or classroom aides were with him, but I was in another part of the classroom in case Ethan had problems.

I think that I was probably the only parent in the school district who was at school with his kid everyday.  I suspect there are a lot of other parents who also feel like the school system isn't adequately supporting their kid.   From what I've heard, those parents usually pull their kids out and home school them.  Given my lack of teaching skills and Ethan's desperate need for socialization, home schooling wasn't an option for Ethan.  So the school was stuck with me.

Working with the school system was an ongoing point of friction, for us and for them.  On the surface, his teacher and the school staff
seemed to understand just how badly everyone had blown it last year and they were okay allowing me to support Ethan in the classroom.  But, while they supported it on the surface, the subject of getting me out of the classroom came up weekly. Honestly, I think they saw me as the worst kind of helicopter parent, unable and unwilling to let Ethan grow in school without me.

Asleep in the bike at school
in November.
For better or worse, none of the staff we worked with this year had witnessed the type of full scale meltdowns that Ethan was experiencing at the school they sent him to last year.  I honestly think they would have cut me some more slack if they'd seen what that looked like.  But Sarah and I weren't about to let them do that to Ethan again.  As a result, they never seemed to know where the line was between letting me support Ethan and telling me to get the hell out of the building.

Every time they asked when I was going to be comfortable leaving the classroom, I reiterated that I absolutely didn't want to be in the classroom or in the school, but that the school hadn't demonstrated that they could successfully support and manage Ethan without triggering an anxiety response.  

During the fall, Sarah and I were doing everything we could to try to teach the teachers and staff in Ethan's classroom what we'd learned about him in the past year. Primarily, we were trying to help them see that many of the typical teacher behavior strategies are exactly the kinds of things that can trigger him.  We were trying to help them learn to interpret Ethan's limited verbal responses and to read
Ethan, with his excellent private occupational therapist,
Rebecca Peterson.  OT has been a fun highlight for
Ethan this year.
his body language to better understand the early signs that he's struggling.   We used the care plan that we'd developed during his spine surgery and wrote an extensive guide about Ethan's common triggers, signs and strategies for working with him.

In March, Ethan's school schedule was up to an hour and forty-five minutes every day.  The school brought in an aide for Ethan.  After everything we had tried to teach them about Ethan and months of observing him, the team didn't pass along any of that information to Ethan's new assistant.  Her first day with him, she turned to me and asked, "So, did you all just move into the district?"  She hadn't been told the first thing about his history or how work with him.  As a result, by her fourth day with him, Ethan was so agitated that he wouldn't even enter the school building.  In her first three days, we lost a month of progress because she hadn't been trained or prepared to work with him.
Ethan and I were at the mall in early December.
Ethan asked, without the least hint of fear or anxiety,
to have his picture taken with Santa. This
picture is the moment when I really thought
he'd turned a corner.

The school should have done a better job training Ethan's aide before she started working with Ethan. However, the other half of the problem was that Ethan was just too nervous and hyper-reactive for most people to work with him. Ethan is on a couple of baseline medications (guanfacine and citalopram) to help with his emotional control and his anxiety.  Unfortunately, that baseline just didn't give him enough support.  In order to give him  enough help to allow his school team time to learn how to work with him and to help Ethan escape the cycle of escalation and negative association, we added a small dose of ativan on school days.

After the problems with Ethan's new aide, the school district case manager brought in their resident pediatric behavior specialist. She observed Ethan over a period of time and put together a really good and insightful report and list of recommendations.  Frankly, almost everything she said just reiterated what we'd been telling the school for months.  It was wonderful to get the validation, but it would have been nicer if they'd listened to us from the get-go. One of the big things the behaviorist was able to do was bridge the gap from understanding Ethan's behaviors and supports to crafting appropriate goals and lessons for him.   As she put it, basically, she gave the team license to really back up  and put together a pre-school level plan for him.   Having these more realistic goals, activities and expectations for him has really been a significant step (that, <ahem>, shouldn't have taken so long).

Ethan's karate chopping bubble routine at the
class talent show.
When Ethan's aide started, I stopped going into the classroom with Ethan.  However, I did stay in the building.  When Ethan's in a full escalation, it's really easier for me to work with him then it would be for staff.  For example, I can pick him up and carry him out of a classroom or away from a street or parking lot, but it would be more difficult for the school staff to do that.  I also wanted to be close by in case he was demonstrating chronic low to mid levels of anxiety.  Those are the kinds of things that the school might not include in a daily report home.  But they are signs that Ethan's needs aren't being met and when they occur regularly, they usually lead to significant escalations after only a few days.

Gradually, we started to see signs of increasing stability at school.  In addition, I have to mention that
Sleeping in his chair in March.
Ethan's school team really started to understand him and do some really good work with him.  But our attempts at building a sense of regularity and a predicable routine were often frustrated by Ethan's sleep problems.   A few nights a week, Ethan would wake up at 3 a.m. or so and be up till 7.  At that point he just wasn't going to be ready to wake up for school at 8 a.m.  Equally often, Ethan and I would go to school and Ethan would fall asleep in his push chair soon after we got there. 

Towards the end of the school year, we added an hour long afternoon  block.  Primarily, we wanted to give Ethan an option for school time in case he slept through the morning block.  But we started taking him for both morning and afternoon sessions whenever we could.  That took his school day up to 2:45 minutes a day.  Unfortunately, it was really hard for Ethan to transition from home to school and back again twice a day.  And, due to staffing constraints, Ethan's one on one aide wasn't available to lengthen Ethan's day in the morning.

Actually towards the end of May, I thought Ethan was stable enough to allow me to leave the school building.  But after a couple of days, Ethan's erratic sleep schedule together with the grind of morning and afternoon school sessions, started to prove too much for him.  After a couple of days of that experiment, Sarah took him to school because I had another appointment.  Fortunately, she stayed around, because Ethan ended up in the school parking lot and his aide needed some help to coax him back into the building.  The following day, he had a larger escalation and his teacher needed some help with him.  The underlying issue that day wasn't a major thing.  But he was tired enough that he didn't have the emotional control he needed in order to make good decisions.  So, I stayed in school through the last couple of weeks of school. 

Ethan, proudly showing off
his school to his big brother.
As you can see, there's been a lot of two steps forward, one step back over the last nine months. Through ups and downs, however, Ethan's progress has been real and measurable.  We're seeing real gains in his verbal abilities, problem solving, confidence, and his emotional control.  The improvements are noticeable month to month, even day to day. When Ethan has a good day at school, he's more expressive and talkative for the rest of the day.  We hear him using lots of new words and new sentence constructions all of the time.  We see him becoming more confident both with his classmates, and with other kids around and outside of school. Every time Sarah or I see or hear a new word, phrase or skill, we smile and do a dance.  There's been a lot of that, going on, especially through the spring. Yet, it's tenuous progress, and missteps or pushing him too hard easily cause him to lose ground.  

When I look back over the last year, I'm really proud of Ethan's growth and development.  I'm very happy that we can look back with a belief that it was worth challenging Ethan and pushing him, that we have helped him stretch and grow without breaking him  again.  It really feels like everything we're doing, school, behavioral supports, medications, and the enzyme replacement therapy are all working together.   Even more, Sarah and I have helped Ethan get to this point without dedicated psychiatric support.  Ethan's psychiatrist, dropped us in January after we repeatedly asked for her to share reports and recommendations with Ethan's school and his pediatrician.  Honestly, I'm not sure that she ever really agreed with our decision to get Ethan back into school. But that's another story.

We just recently hired a new care assistant and she'll begin working with Ethan in a few weeks.  A
With Mom at book fair.
few days ago she asked me what our goals are for Ethan's future.  That's a really valid question for any special needs parent.  It's particularly relevant for Sarah and me given how hard we push for  treatments and supports.  Is it worth the cost to Ethan, to our family?

Certainly, we never want to subject Ethan to that level of emotional trauma again.  Much like a recovering alcoholic, Ethan will always be a trauma victim.  He will always have heightened sensitivity and responses in certain areas.  Whatever else we try to do with him, we have to remember that.  We never want to break him again.  Beyond that, we think he's spent so much time in isolation that getting him out of this house and into school, where he can develop academically and socially is absolutely critical to his long term health and development.  It's impossible to know where he will be when he's 18 or after that.  Our hope for Ethan is that he'll be able to hold a job, live semi-independently, and be happy.  If after all the challenges he's been through, and those that lie ahead, he can do that, than Sarah and I will keep doing our happy dance.

Some expressive shots of Ethan at Caleb's school.

Ethan recently started riding Caleb's old training wheel bike.
Of course, we're thrilled that he's riding.  But what really
makes us happy is that he's doing a great job of thinking
about what he's doing, planning where he wants to go,
steering the bike and pedaling and stopping.
All of that has developed over the last 9 months.


tina waite said…
I read the whole thing, and as usual it is awesome! Thanks so much for sharing. I especially appreciate the goals you shared, and am so happy to read that you are setting high goals for him! Let's hope he will reach his absolutely highest potential possible, and I believe he will, thanks to your and Sarah's patience and wisdom and awesomeness! Looking forward to learning much about your beautiful son!
Sandi said…
He is such a cutie! I admire your patience and persistence in working with the system!