Last Wednesday, acting on the recommendations of Ethan's therapist and his new developmental health nurse practitioner, Sarah and I pulled Ethan out of kindergarten for at least the remainder of the school year.
We've got a lot of work to do to heal the trauma that he suffered this fall. But we're already seeing clear signs of improvement and it's wonderful to see him happy again.
Why it didn't work
There are a lot of reasons that Ethan has had a hard time in kindergarten. When you boil it all down, he just isn't emotionally mature enough for it. Added to that is the fact that his verbal abilities are still too limited for him to effectively communicate with us and with his teachers.
In some respects he did okay. Academically, he did pretty well with the lightened kindergarten curriculum in his special education classroom. His biggest difficulty was transitioning from one task to another. The classroom schedule basically broke the 2 hour and 40 minute day down into a lot of 10-15 minute activities and each transition was two distinct challenges for Ethan: first in stopping what he was doing and then transitioning to a new activity that he probably didn't feel he wanted to do.
When Ethan does get frustrated, he usually doesn't like people trying to guess what he wants or trying to redirect him into what they want him to do. He knows what he wants and doesn't want to do. He can't express it, and he's having a hard time processing it all in an emotionally age appropriate way. All of that is a long way of saying that if you try to talk with him when he's upset, it usually only serves to upset him further. It's a hard trick to pick up. When a kid's upset we all naturally try to offer suggestions to help. Sarah and I have a hard time with it and often have to remind one another to stop talking at him. You can imagine, in a kindergarten setting with a number of teachers, instructional assistants and pull-out specialists, all of them wanted to offer Ethan suggestions when he got upset, and that often would only serve to get him more and more upset.
Add into that increasingly destructive amounts of fear and trauma as his parents and teachers mishandled it and kept putting him into these situations day after day without addressing the first two issues, and the whole thing went going downhill fast.
Moments of Clarity
There were a whole lot of times this fall where I knew that we were on the wrong track and where it was clear that all of the adults involved with Ethan were hurting more than we were helping. But there are three incidents that really stand out for me.
The first was in early January, a couple of days after school started again. Ethan didn't want to go to school and he wasn't cooperating getting dressed and ready. In fact he'd just thrown his glasses out of the window. I just didn't have the energy to fight him any more. So I told him that he could stay home, but he couldn't watch tv or play with the iPad. A little while later, Ethan was upset with me because I wouldn't let him have the iPad. I looked at him and tried to reason with him and said, "No, you don't get the iPad because you didn't go to school today. You need to go to school." And my five year old looked back and me and yelled, "No! You go to school!"
A few months before that, we'd started seeing a developmental pediatrician. The guy didn't talk much (which may have been part of the reason he didn't help much), but one of the few things he did say, came back to me at that moment. He said that young kids are kind of hard wired to want to be helpful and cooperative. That five year old Ethan was now not only oppositional but confrontational, was a big, flashing neon sign that we were screwing this up.
That day I sent an email to Ethan's teacher explaining why Ethan wouldn't be in class that afternoon, and I copied the therapist that we'd just started working with. At that point, Sarah and I had had an initial meeting with her, but we were putting off bringing Ethan in for an appointment until the therapist had done a school observation to see what was happening there. When the therapist got this e-mail, she wrote back to say that we wouldn't wait for the observation, and she wanted to have him come in.
The second event that is sticking with me occurred at that appointment, two days later. Sarah, Ethan and I were sitting in the therapist's waiting room. There was no one else in the room and the three of us were playing one of Ethan's games that we had brought. We were having a good time and Ethan was fully engaged in the game. The minute the counselor walked in, Ethan bolted out the door and we had to carry him back into the office where he had a 45 minute hitting, yelling, throwing escalation.
That wasn't the first time this fall he'd escalated like that. By that point, we were seeing similar behavior almost daily. What was notable about that event is that it was so clearly a fight or flight response. Ethan wasn't being oppositional at all, he was just afraid and he was panicked and ran for the door. The starkness of his reaction really drove home the fact that Ethan's behavior wasn't just oppositional A lot of it was fear and trauma. While there are likely other parts that we need to understand, we needed to understand Ethan's fear and help him start to feel safe.
We made a couple of changes at school. First, instead of having me leave the school if Ethan was settled, the plan was that I would stay for the whole half-day kindergarten session. There were a couple of things we were trying to do there. The idea was that I could do a couple of things that the staff couldn't: I could help him feel safe and secure and identify when he might be starting to escalate and intervene to see if I could calm him; and when he did escalate, I could read his cues better than the teachers and could help decrease the severity of his escalations over time.
Even though Ethan was a bit more settled during the two weeks I spent in his classroom, I really wondered if we weren't doing more harm than good. Ethan would typically start to get upset when he first saw the school building. Once I carried him into the classroom, he would be upset for 10-15 minutes before I was able to transition him into something fun, like Legos. Then I'd work with his teachers to transition him into an academic activity, and once he was settled with them, I'd back off and let the teacher work him him. That would work to a point, and he was often well settled at this point and would actually get some decent school work done. But as soon as that activity ended and it was time to move on to the next thing, Ethan would balk. More often than not, at that point, he'd escalate again for a period of time, and even after I was able to calm him down, it was hard to get him to refocus on school.
So, at this point, in any given school day, Ethan was typically on task about 10 minutes, stressed for 30-40 minutes and tuned out the rest of the time. And this represented an improvement over where we had been.
Changes in Ethan's Care Team
It was clear pretty early in the fall that Ethan was having a hard time in kindergarten.
A lot of transplant patients and a number of Hurler kids have behavioral impairments, such as problems transitioning between activities or ADD diagnosis. Ethan's been having problems transitioning for years. Given that background we started with a medical behaviorist (MD) first instead of a therapist. We started seeing this guy in October, but by January, Ethan's condition had only gotten worse.
In late December, we had added a therapist to Ethan's team. By that point, it seemed clear to us that the MD wasn't giving us the information and help we needed. About the time that Ethan had his first meeting with his new therapist, we asked the therapist and Ethan's pediatrician for recommendations for a new medical behaviorist.
Ethan was really in crisis at this point and it was pretty sketchy trying to find a new person in this role when it was so clear we needed to focus on helping to stabilize him. I think Ethan's pediatrician and his new therapist thought our interest in changing providers was ill-timed at best. Nevertheless, Ethan's therapist gave us a recommendation for a nurse practitioner and was able to talk with her to get us an urgent appointment.
It look longer to switch providers than we wanted, but it was soon clear that the change was for the better. In the first twenty-minutes of the our first meeting with the new provider, she proved be more knowledgeable, and effective than the first person had been over the preceding four months.
After I finished recounting our experiences over the past few months she cut right to the chase. She said that she had real concerns that, given Ethan's medical history, continually placing him in these types of stressful situations could result in a critical immune system response.
I think that hearing that rocked us on our heels. Sarah and I had just started exploring the question of how repeated exposure to stress can cause individuals to develop conditioned cortisol and adrenal responses. But we hadn't yet carried that to the next step to wonder about the system implications, and neither had any of his other doctors.
In addition to this very significant physical risk, she said she was concerned about his long term emotional health. She said that she thought that if we continued to place Ethan into these stressful situations, we would see continual escalations, but then at some point his behavior would seem to improve as he just started to withdraw and disengage.
So long kindergarten...For a while, anyway
She recommended that we remove Ethan from kindergarten immediately. She said that we needed to take Ethan back to the last place he was successful, the early intervention preschool that he was in last year. She was actually the second person to say this. Ethan's therapist had told us the same thing a couple of weeks before. But Ethan's nurse practitioner went a step further. She said, that she would be in touch with the school system to start the discussion of better and more appropriate alternatives for him. And that step about appropriate alternatives is important.
The third thing that stands out to me in all of this, is that Sarah and I didn't think he was ready for kindergarten in the first place. Going back to last spring, we asked his early intervention case manager if we could delay starting him for another year.
With the failed first transplant, Ethan suffered more waste material build up in his brain. He was older than most Hurler kids by the time we were effectively getting enzyme in his brain to help clear it out and he had more waste material to clear out. And, the hard truth is it's more likely that he suffered neurological damage that he'll never recover from. So for all kinds of reasons it would have made sense to delay his kindergarten start, and put it back at least a year.
When we posed the question, we were told that we aren't required to put him in kindergarten, but if he doesn't go he'll no longer qualify for early intervention services and he won't get school services. We could have moved for a home placement and the school system would have given him some, very limited instructional and rehabilitative support at home. He's spent so much time at home, we really wanted him to be around some other kids and to have that socialization.
We now have two external health care professionals saying that Ethan's kindergarten placement isn't appropriate for him. Ethan's nurse practitioner has said that in her medical opinion the burden is on the school system to go beyond the typical bureaucratic responses and develop an appropriate response and services.
Having that conversation with the school system and working out what that looks like for Ethan is going to be a pretty involved process, and it's going to take some time to work that out. It's likely that the level of preschool services Ethan may receive from the school system won't be equivalent to the level of service he could get in kindergarten. Once we figure out what the school system can do, then we'll need to figure out where the gaps are and and fill them in with some hours of private preschool or other rehab therapies. So, it's going to be a while until we settle into a new routine.
Ethan's been out of school about a week now, and he's made a great deal of progress in that short amount of time. Outwardly, the generally happy, affectionate, and physical boy that we love has resurfaced. We haven't had any of the full-scale clothes-stripped-off, throwing-things kinds of escalations that had become almost daily occurrences. He's not back all the way though. He still less cooperative than he was, and he gets mad more quickly than he did before all of this started. In other words, he's picked up some bad habits and he's still scared and shaky. It's going to take time for him to heal more and to regain the trust in us that he lost.
Looking back, the hard truth of the last few months is that all of the adults who work with Ethan failed him. Sarah and I failed him in not trusting our gut last spring and pushing harder to explore other alternatives. And we failed him every day that he struggled in school for not challenging our own preconceived notions of where Ethan needed to be and for not listening to him. Ethan's teachers and school administrators failed him for accepting my sitting in the classroom and restraining him or his becoming so upset that he felt the need to strip to get attention and to express his frustration and anger, neither of which should be considered reasonable events. Ethan's doctors failed him for not looking more closely at what we were telling them about Ethan's struggles and for not looking at Ethan holistically.
While there's lot's of blame to go around, the primary failure was mine. There's no avoiding the fact that I spend more time with him than anyone else. I see more of his positive and negative behaviors, and know his baseline better than anyone . Not only did I put myself in a position where I became a primary stressor instead of a support for Ethan, I didn't react nearly quickly or consistently enough to find additional supports for him either inside or outside of the classroom.
So the question I've been spending a lot of time with is "how do we avoid making a similar mistake in the future?"
I think Sarah and I have learned that we need to listen to Ethan more and trust our gut instincts more. The corollary to that is that we need to be willing to advocate even more for what Ethan is telling us and for the supports that we believe he needs.
It's clear that we're going to be working with Ethan's therapist and a medical behavior specialist for quite some time to get Ethan past this. Even after that, though, I think they both need to become permanent members of his health care team.
Ethan's cognitive development, his limited verbal ability, and his ability to process all of the medical traumas that he is subjected to are the elephants in the room. These three elements impact everything else. It's not enough for Ethan to simply have yearly neuropsych evaluations that identify his strengths and weaknesses. That's like turning a patient loose with a serious heart condition and no management plan or follow up. We should have been providing regular behavioral and developmental care and support from the time he started with second transplant.
Not only does Ethan need the support, Sarah and I need the support, too. I have often said that "I don't know what normal is for Ethan." I simply do not fully understand what his current skills abilities and challenges mean for his daily life. Looking down the road, I don't have any understanding of the supports that might be available or effective to help him thrive. We will need people who can help us navigate all of this.
Combining these two ideas, we need specialists on Ethan's team who can help us define and advocate the school supports that Ethan will need to be successful there. It's important that Sarah and I get impartial information about what supports might be appropriate. Equally importantly, I've come to believe that it's really difficult for two parents to overcome the united front of numerous school professionals who are walking lock-step along a given path. Not only is it hard to get them to move in a direction that they don't want to go, but eventually they wear you down and you start wondering if maybe you're the one who's misreading the situation and you just need to get out of their way. I think the next part of that is that if we really expect to get Ethan the school support that he needs, there's no way to do it without having some external experts to back us up.