Here's What the Doctor Said...

It’s been a few weeks since Jude’s evaluation, but I’m only just now finding time to sit down and work through my thoughts. Since then I’ve spent lots of time talking to his therapists, to Chris, to friends, and to God about it, but I’m still not entirely sure what to think of it all. The evaluation did not go badly, but it was hard, and it wasn’t as encouraging as I’d hoped it would be. In many ways it was very eye opening. It gave us a better idea of where Jude is still struggling, and where we should focus our efforts in the future.

The point of these evaluations is to set up challenging situations for the child and watch how he deals with those challenges. Jude’s biggest challenges are in the areas of communication and social interaction. He definitely struggled with both those elements at the evaluation. Watching him that day was almost like watching the Jude of 6 months ago. He did better than he did 6 months ago, but he was clearly struggling. He hardly used any words at all during the first half of the evaluation. I know that many kids feel shy around new people and new surroundings, but it was more than just shyness. It was almost like he had forgotten how to communicate, and not just with words, but also with non-verbal communication skills. There were many things (like making eye contact, responding to his name, requesting help, etc.) that I know he’s capable of but just didn’t do. The doctor explained that it appears that Jude has not yet learned how to generalize those skills. In other words, he has learned how to use those skills so well at home and at school (settings where he is comfortable and knows what’s expected of him), but he hasn’t yet learned that he can use those same skills in new settings. It sounds crazy because it seems like that should be common sense, but for some reason Jude needs to be taught this concept. So we discussed ways that we can target the generalization of his skills in his current therapy program, and what we need to be focusing on in the future. After talking with his lead therapist last week, we have some ideas that we’re going to begin working on immediately, and some other ideas that may require long-term planning, including possibly selling our house and moving to another county (yikes!!). I’m trying not to focus too much on the overwhelmingly large long-term picture, and instead take one small step at a time. And thankfully, the amazing staff and therapists at his school have promised to help us every step of the way, which is good because we really have no stinkin' idea what we're doing.

 So overall, it was not a bad evaluation. It was, however, eye opening, as I mentioned before. I realized that I have pretty much been in denial for the past 8 months, not really believing that Jude is truly on the autism spectrum. I don’t think I’ve just been naïve. The psychologist we’ve seen at Vanderbilt is one of the country’s leading autism experts, and even he is not sure whether or not Jude is on the spectrum. He even brought in a colleague during this evaluation just to get a second opinion, and his colleague wasn’t sure either. And the therapists at his school are not convinced that he’s on the spectrum either. He just doesn’t quite fit the profile, although he has several red flags and areas of vulnerability. So I’ve had reason to be optimistic, and I still do. But at that evaluation…watching him struggle with things that should be natural and intuitive, seeing his skills break down right in front of me…it was the first time I admitted to myself that my child is probably on the spectrum. He's brilliant - that's becoming increasingly more clear. Alarmingly intelligent in many ways, but still on the spectrum. Admitting it doesn’t necessarily change anything. The spectrum is a big place – there are individuals with a wide range of skills on it. That’s why they call it a spectrum. Jude is exactly the same as he was before the evaluation, with all the same strengths and skills, but somehow it feels different. Admitting it to myself changed things. It made me stop and re-evaluate my expectations. It made me face my fears and begin questioning what exactly I’m afraid of. And most of all, it popped my little bubble of denial, which is sad because I really liked that bubble. I felt safe in that bubble – safe and warm and comfortable. And heaven forbid that I should have to go through anything in my life that makes me uncomfortable. I mean, if nothing else, God at least owes me a life that’s comfortable, right? Clearly, the cancerous lies of the prosperity gospel are alive and well in my subconscious mind.

 At the end of the day, we still have much reason to hope. Jude has proven time and again that he is very, very smart and very, very teachable. In just 6 months he has learned so much. Yes, those things should have come naturally, but they didn’t. Still, he was able to learn them, and now they do come naturally to him in familiar settings. Now he needs to learn how to continue using those skills in unfamiliar settings. He has the best team of therapists in the city walking along beside him, helping him and teaching him and loving him. His therapists are optimistic and encouraged by his progress, and so is the doctor. He ended the evaluation with these words: “I think it’s entirely within the realm of possibility that a few years from now we’ll be having a conversation about sending him to mainstream kindergarten, possibly without any additional supports in place. And I don’t say that to many of the families I see in here.” So that's definitely reason to hope.

 The doctor also said that had we not chosen to send Jude to the school we chose, had we not intervened as quickly and aggressively as we did, we would be having a very different conversation right now. He feels confident that Jude would have continued to decline in his skills and we would have missed that important window of opportunity. Hearing those words was very comforting. It reminded me of Who has been in control from the very beginning of this journey. Once again, we find ourselves facing some major decisions in the coming months. Once again, things feel uncertain and unsettled. Once again, I’m unsure where to let my emotions land– on realism or hope. I can choose to feel overwhelmed and afraid again, or I can choose to look back, see how He has carried us through this all along, and sing “Great Is Thy Faithfulness” at the top of my lungs. My voice might be a little shaky and out of tune. I might stumble my way through, forget the words a few times, and hit several wrong notes. But I can choose to keep on singing anyway. Because after all, it’s not really about me and how good I sound, is it?

 Again, Jesus Calling came through with exactly what I needed to hear. I read this the other day and was brutally reminded again that it’s time to take my eyes off myself and what I want from my life:

 “Give up the illusion that you deserve a problem-free life. Part of you is still hoping for the resolution of all difficulties. This is a false hope! ...Instead of seeking perfection in this fallen world, pour your energy into seeking Me: the Perfect One…When things seem all wrong, trust Me anyway. I am much less interested in right circumstances than in right responses to whatever comes your way.” 

 Dang it. So I’ll let out a big sigh, take another deep breath, and keep trudging down this rocky path of sanctification. But look at the cute little buddy I get to take along with me!