We'd been going back and forth on this for a few minutes. She kept trying to test Ethan, asking him to copy sequences of colored blocks or identify images in pictures. Ethan kept shutting her out, playing with his Legos or hiding underneath the furniture. I kept telling her that unless she was going to get enough responses to make giver her us a valid test result--and it didn't look like that was going to happen--then there was no point in stressing Ethan and we might as well stop the testing right there.
It struck me as odd that this woman, who works to understand and define the needs and supports for special needs kids, couldn't accept Ethan's needs when they went against her intentions or were outside of her paradigm.
Then I realized that this is exactly the problem that all of the grownups in Ethan's life have been having for the last few years.
None of us, not his parents, not his teachers, and not his doctors have recognized and accepted the fact that Ethan's needs are quite often outside of the range that we're willing to accept.
All of the adults in Ethan's life have their own agendas for Ethan, things we want or need Ethan to do for us, whether that's cooperate with an eye exam, or go to school, or take a neuropsych test. We all approach Ethan with some pre-determined set of assumptions about needs and abilities and we plan to interact with him using some pre-defined set of special needs accommodations.
But Ethan's not in that range. Ethan's range of needs and abilities are far to the left or to the right of us, or above us, or whatever. The one place Ethan's needs usually are not, is in the same range that we've got in our heads.
I used to think that the parents were the key piece for understanding and interpreting their child's special needs. But this past year has taught Sarah and me that if we want to help him, we need to accept that he's the one in charge of his life.
It's an interesting feeling knowing that you're not in control of your special needs six year old. I didn't expect this feeling of helplessness until my kids were teenagers.
We're in Minneapolis for Ethan's annual evaluations. We've been out here about a week and a half so far, and we fly home on Friday.
|Having some fun at the Mall of American before exams kick off.|
With all the trauma and anxiety Ethan has experienced this year, we've taken as much care as we could to make the appointments as easy as possible for him. We limited his appointments to no more than 3 hours each day. All four of us came out with him. Caleb comes with Ethan and me to support Ethan through the appointments while Sarah puts in a half-day of work, telecommuting from the hotel. In the afternoon, all of us can relax together, swimming in the hotel pool, or going to the zoo or the movies or heading over to the Ronald McDonald House to play and have dinner.
|Rockin' the treadmill|
Now that we've been here awhile, Ethan's getting worn down. For most of his passive appointments--where the doctor just has to examine him or review lab results--Ethan's content just to sit there and tune the doctors out as much as he can. He will engage with the doctors occasionally if the doctors are particularly patient and willing to work with him. But Ethan hasn't been willing to actively participate in the exams or allow himself to be poked or prodded past a certain point.
Considering the rough year that he's had, and where he was just a few months ago, Ethan's doing really well. But we're not pushing him very hard, and some of his providers would probably say that we're not trying hard enough.
I'm trying to watch and listen to him carefully and I'm not willing to push him very far at all. For example, yesterday at our eye appointment, Ethan took one look at the opthalmology chair and equipment and said, "Run for it!" He wasn't joking. He started to escalate a little bit when I blocked the door and wouldn't let him out. He calmed down a bit thereafter, but based on his initial reaction and his overall mood, I couldn't see anyway that he would sit in the chair and cooperate with the exam. So I called it right there, and told the doctor that I was canceling and getting him out of there. Coming out of that exam, I also called the scheduler and preemptively canceled the audiology appointment scheduled for Thursday.
|Horsing around at physical therapy|
Maybe I was too quick to give up on both exams. Dr. Bothum, the eye doctor, is really good with kids. Maybe I should have let him have a go with Ethan to see what he could do. The same is true with the audiology exam. Maybe I shouldn't have assumed that he'd have a problem with audiology. Sometimes he does okay with that and there's a chance we might have gotten important results. But I've come to see each exam as a series of pin-pricks. The more involved exams like eye checks or hearing exams have more pin pricks. Even if we get them done, all the pin pricks take their toll on Ethan leaving him more raw, sore and sensitive when it comes time for the next appointment.
Ethan's escalations are not just responses to current anxiety and stress but are episodes that cause additional damage in their own right. Truth be told, though, It's not just Ethan. Sarah and I are raw and sore and emotionally exhausted. Each escalation takes a toll on us as well, so we're all tired and raw. None of us want to see him get to that point if it can be helped.
|Zoning out during a bone scan.|
Through April, May and June, we started to see his volatility decrease and he started to heal from the events of the fall and winter. Also at that time we finally got his meds to a therapeutic level to help stabilize him further. The last couple of months, he's been doing really well. He may have one or two escalations a month now, but they're not nearly as extreme as they were and he's typically able to recover more quickly.
But, we're asking a lot less of him. We're not challenging him very much at all. Chronologically, Ethan may be six years old now, but developmentally, he's closer to three. And he's a three year old with a lot of baggage and scars and very little emotional control.
We're constantly negotiating and compromising with Ethan. We rarely say "no" anymore. If Ethan goes to the cupboard and wants to snack on some crackers or cookies even though it's almost dinner time, the best we can do is try to slip some pear slices and maybe some chicken onto his plate, too. If he wants to watch a show at bedtime, saying no may well upset him to the point where it sets his bedtime routine back an hour or an hour and a half. Instead, we'll bring an iPad to bed and fast forward the show to so it's only got a few minutes left. If Ethan doesn't want to wear his seat belt in the car, we'll let him get away with that because it's far easier than having to physically wrestle him into a car seat and have him scream for ten minutes and then be uncooperative when we get to our destination.
|Destressing after facing the x-ray machine.|
SmilingDoes all of that stuff above sound overly negative? I hope not. Because, really, Ethan is doing so much better. We've been keeping a behavior journal and over the last month, you can see the number of entries that say he's happy, creative and more engaged than he has been in quite a while. We are just starting to get Ethan back.
No, he's not back all the way. But outside of structured, grownup led things like doctor appointments and testing and hard stuff, he's our happy fun boy again. We've been getting out more lately, having more fun together and there have been a lot more smiles all around. Mostly. There are still occasions in daily life that cause him anxiety and upset him, like large groups of people in an unfamiliar setting, but he usually responds to being comforted and gives us the time to help him.
|@ the Raptor Center|
SeattleThe hard part of this is that two and a half weeks after we get home, Ethan will have his spinal fusion and knee plates and pins placed at Seattle Children's. He'll be in pediatric intensive care for 2-3 days, then in a post surgery ward for another four days. Then when he gets home his legs will hurt and he'll be in back brace day and night for the next three months.
And none of us know how he'll respond to that kind of invasive bodily assault, let alone being forcibly confined to a brace for three months.
|@ the Minnesota Zoo|
It's certainly possible that he'll be sore and groggy after the surgery and will just accept the brace as a fait accompli. But we know that when Ethan gets upset, one of his key moves is to strip off everything starting with his medic-alert bracelet and continuing right down to his diaper. As I'm writing this, it occurs to me that we'll probably need to talk with his surgeon about casting his torso. I don't know if that's a realistic option. I know it wouldn't be comfortable for Ethan. But if it's viable and if he could have almost as much mobility in a cast as I think he would in a back brace, then maybe it's the way to go. It might be a better option than arguing with him about something that he decides he can't tolerate.
And there we've come full circle, haven't we? We're defining the set of accommodations and tools that we're prepared to use with Ethan instead of listening to him.
I just don't know the answer to that. How do we listen to Ethan while preparing to do this to him? All I know is that his spine is curved enough that it's getting worse over time. It's going to keep getting worse and the longer we let it go, the harder it will be to correct and the worse the potential permanent damage to Ethan.
|The hotel pool has become a key place for Ethan to unwind after exams. |
He is FEARLESS!
|Snoozing at the Minnesota RenFest.|
|Caleb engaging with the Science Museum|
|Mini-golf Ethan style @ the Science Center|
|Recovering from a sedation for a bone scan, carpal tunnel check and spine and brain MRI.|