Re-Evaluation

So Tuesday was a big day for our little J. We took him back to the hospital to be re-evaluated by the developmental psychologist who saw him back in February. We didn't know this for the initial evaluation in February, but apparently the doctor we saw is one of the country's leading autism experts. He is THE man to see, and we are thankful that not only were we able to schedule an evaluation with him very quickly in February, but we were also able to see him again, and we'll be seeing him again in July. He really is great. So anyway, there was a part of me that was hoping that he would spend a few minutes with J, see the progress he has made, and immediately say "Oh, he's fine! Go on home. You have nothing to worry about." However, I knew that wasn't a realistic scenario (but I still wanted it!). So we knew that our two most realistic scenarios would be that the doctor would either definitively diagnose J with ASD, or that he would continue to be uncertain about the diagnosis. Fortunately, the latter scenario is the one that occurred, and it really was the best news we could have realistically hoped for at this time.

After talking with us and observing/evaluating J, the doctor agreed that he has made amazing progress. His language has really taken off. The speech therapist at his school told us that the goals they are beginning to set for him are almost age-appropriate, which means that his language skills are nearly caught up to where they should be for a child his age. That's very encouraging. And since he's started at his new school, his social interaction skills are improving like crazy. He is so much more socially interactive and so much less overwhelmed and intimidated by new people/new surroundings. He's friendly, outgoing, affectionate (even with new people), makes great eye contact, plays back-and-forth interaction games, and is even beginning to engage in some pretend/imaginative play (feeding a baby, giving a toy dog a drink, pretending to have Elmo talk to a baby, etc). The lead therapist at his school told me the other day that she has never seen a child make so much progress in such a short amount of time. So of course we're very encouraged by all of this. However, there are still some red flags. He still has some areas of vulnerability where he's just not interacting in a developmentally typical and appropriate way. Here are some examples: When he wants someone to do something, like blow bubbles, instead of handing the bubbles to the adult and saying "More bubbles," he will throw them in the adult's lap. He may follow up by saying "More bubbles!" But he doesn't look the person in the eye, hand it to him, and make the request. It may seem like a small thing, but it's an important social skill. He's improving in this area because he's being trained on how to request things appropriately, but typically developing children pick up on this type of skill simply by observing the appropriate behavior being modeled. J doesn't.  It's also very difficult to divert his attention. He rarely follows someone's gaze or point when they try to direct his attention to something specific, and sometimes does not respond even with repeated use of his name. These are just a few examples, but there are several of these social/communication skills that are still challenging for him. 

Overall, the doctor feels very optimistic and encouraged by his progress. He does not feel confident making a diagnosis of ASD at this time, but he is still concerned about J's red flags and areas of vulnerability. He recommended that we continue with our current course of action, continue the interventions we have in place, then come back in 3 months to see if things may be a little more clear at that time.

So now we begin to process what this means and how we feel about it. I know it was the best news we could have hoped for, so I'm glad for that. But at the same time, I just wish someone could tell me for sure that my little boy is going to be just fine. I still hope that he doesn't end up on the autism spectrum, I hope that he develops strong and appropriate social skills, I hope that he will develop healthy, intimate relationships, I hope that he will be able to clearly communicate his thoughts and feelings, I hope that he will one day understand who Jesus is, and I hope that he will understand how very, very loved he is. I want him to be smart, I want him to do well in school, I want him to be able to do anything he wants to do in life. I want all of this so much for him, yet I have no guarantee that any of it will happen. We're doing everything we can do to help him reach those goals, but ultimately we have to surrender our child to the One who created him. We know that God formed this sweet, beautiful little boy for a specific purpose. I may have goals and dreams for him, but they may or may not be the same goals for which he was created. So we will pray and we will love him, and we will continue to get him the best interventionists and therapists that we can find. And somehow we will continue to hope in the midst of the uncertainty. This is why we can continue to hope, even when we can't see what's ahead and it feels like we're walking with blinders on....

"Even the darkness is not dark to you. The night is bright as day..."  ----Psalm 139:12