Update on Jude

Jude has an appointment at Vanderbilt with the developmental psychologist on Tuesday, so I needed to take some time to re-evaluate how he's doing. There's A LOT of information here, mostly as a way for me to keep track of what we need to discuss with the doctor. It may be way more detail than anyone else is interested in, so feel free to skim the text, skip to the end, or just look at the cute pictures. I promise I won't be offended :)

Finally, I’m sitting down to write an update on Judle Bug’s progress. The problem is that I hardly know where to start. He’s come so far since my last update! Let’s see, where to begin…

First of all, Jude’s language skills have just exploded over the past month. He was doing well before with his speech and language, but he really has finally hit that exploding point. He’s stringing together multiple words, like 5 or 6 or even more, and sometimes making complete, grammatically correct sentences. In fact, earlier this month we took him to Vanderbilt to be evaluated for a research study being done on toddlers with speech/language delays. Jude did NOT qualify for the study because he doesn’t have a language delay anymore! A score of 85-115 is considered within normal limits. Jude scored 112. That’s amazing. He was at the HIGH end of normal! His speech therapy has definitely been helping!

Here are some examples of things he’s been saying:

--“Mama, I play with Baby Micah.'

--Before breakfast is even ready, he climbs in to his booster seat and says “I ready, Mama. I ready for pancakes!”

--“Look, Mama! Fish is swimming.”

--“All done Mommy hold Baby Micah.” (That’s my cue to put the baby down and give Jude some attention.)

--When Clara took his car, he very calmly said, “Clara, that’s Jude’s car. It’s Jude’s turn car. It’s not Clara’s turn. It’s Jude’s turn.” (I was super proud of him for that one!)

--“I want play Silly Faces game. I ready Daddy play Silly Faces game.” (Chris’s cue to hurry up and go play the Silly Faces game with Jude.)

--After coming home from school, “I see my friends at school. I see Robbie. I see Grant. I see Abby. I no see Margaret (Margaret wasn’t there that day). I fun at school, Mama. I had fun with Miss Lori.” Um, AMAZING!!!

--“Look, Mama. I see zebra. I see two zebras.”

He’s using multiple and complicated parts of speech- possessive, plural, verbs, present progressive tense, prepositions, etc. And even more importantly (to me, anyway), he’s using his language to get the attention of other people and point out things in his environment. It seems minor, but it was one of the red flags we saw earlier this year...he didn't feel the need to point things out to other people just for the sake of social interaction. Jude would get my attention when he NEEDED something from me, but not just to show me something because he thinks it's interesting. It’s called shared enjoyment, and it’s a skill that I’m very happy to see him gaining. It's a great step towards the development of better social/relational skills.

(Reading books with Daddy. He LOVES to read books, which is great because 6 months ago he wouldn't let us read books to him at all. Now we can't make him stop!)

Jude has also learned a lot academically. He can name and label all of his letters and numbers, and just a couple weeks ago he started learning the letter sounds. He has now just about mastered that skill, meaning he can tell you what sound every letter makes. The crazy thing is that he learned them so quickly! Once they started working on letter sounds, he had pretty much learned them all within a week. Now he walks around pointing out things and telling me what letter they start with, like this: “Mommy, it’s a butterfly! B says buh. Buh buh butterfly!”  He’s very bright and very teachable. But what confuses us is that he doesn’t seem to be learning many things naturally the way most children do. Most kids will eventually pick up on how to use things like prepositions by themselves. Jude doesn’t seem to do that. He didn’t learn to make eye contact until he was taught. He didn’t learn to use words to communicate what he needed until he was taught. We’re thankful that he CAN be taught and that he learns so well, but we’re unsure why he’s not picking up more skills naturally. Fortunately, it seems like he’s beginning to do so. His speech therapist has pointed out some parts of speech that he’s using that she hasn’t taught him, which means he’s picking them up just by observing and listening to those around him. So maybe incidental learning is another skill that is beginning to emerge.

(Just being cute...)

Other important skills he's learning are imitation skills and play skills. A few months ago, Jude hardly ever imitated people, either verbally or through motions (another ASD red flag). Now he repeats almost everything he hears us say, which is a great way for him to learn new vocabulary and language skills. He also copies just about everything his sister does (which is not always a good thing!). It’s a great way to increase his social skills. Clara and Jude have so much fun playing together – she runs around and acts crazy, and he imitates her perfectly, then they both crack up laughing. It’s quite entertaining, actually.

He’s also picking up better play skills, meaning he can play appropriately with toys. Instead of staring at and inspecting his toys to see how they work, he actually plays with them. Yesterday he asked to play with trains, which he has never done before. So of course I dropped what I was doing (making dinner), and we made a train track. We got out some trains, and he made the trains go round and round the track, talking about them and making sound effects. And he’s beginning to use some imagination, which was a virtually non-existent skill a few months ago.

(Playing with his "friends" on the Little People play set. It's so fun to see his imagination beginning to emerge.)

He does, however, still have his challenges. Social skills are still the most challenging for him. He’s doing much better in this area, but he still struggles. When he finds himself in unfamiliar surroundings or around new people, he reverts to some of his less than ideal coping skills, like marching in circles, jumping, or occasionally lying on the floor and rocking. These behaviors are rare now, so that’s progress, but they do occasionally still happen. We’re working with his school to come up with some field trips in the community where we can bring a therapist along to help him learn to cope with overwhelming situations. One step at a time.

We also have some concerns about how much he's processing vs. what he's just repeating. He struggles to answer open-ended questions, although he's learning (once again, he needed to be taught this skill). If he doesn't know how to answer a question, he just repeats words that he's heard before. It's called echolalia, another behavior characteristic of ASD.  Again, he's making progress, but this is still very concerning.

(Working on some sensory skills...putting bath foam all over himself and playing in the sandbox. Both are great ways to desensitize him from his sensory aversions. We worked a LONG time on this before he would touch that bath foam, let alone put it on his face. And he only just recently started sitting in the sand box. Progress, slowly but surely...)

So overall, he is doing amazingly well. Of course this is what we hoped for, but we never expected him to progress so quickly. He's a completely different kid than he was 6 months ago, but he continues to have some red flags and areas of vulnerability, some inappropriate and atypical behaviors. I struggle with trying to balance my hopes for him with realistic expectations. Part of me hopes that he doesn’t end up on the autism spectrum at all, that he has no long term behaviors that will make him stand out from “normal” kids in the classroom. I still hope that he becomes comfortable in new social settings, that he develops strong relationships, that he doesn’t act ***weird*** (whatever that means) around other kids. I don’t want him to be singled out or made fun of by other children (or adults!). But the other part of me wonders how realistic it is to hope for these things. Am I asking God for too much? Will I be disappointed if He doesn’t answer exactly the way I want Him to? And more importantly, is that what's best for all of us?  I love the C.S. Lewis quote that says “We are not necessarily doubting that God will do the best for us (or our children…); we are wondering how painful the best will turn out to be.” Yes, that is exactly what I’m wondering. I know that God has a perfect plan for this child, but what if that plan involves a lot of struggles and challenges for my sweet boy? What if he doesn't get to have the life I want him to have? Can I surrender my hopes for Jude and trust that God's plan is better, even if it means facing hard times ahead? That’s the struggle I face every morning when I get out of bed. Some days I do okay. Other days not so much. But thankfully, there is enough grace to cover my not-so-great days. And the next morning I can start all over again, and there will be a fresh supply of grace when I fail.

I was reading “Jesus Calling” the other morning, and this thought stood out to me: “Anything that tends to make you anxious is a growth opportunity.” Jude is by far my biggest source of anxiety right now. The hardest thing to deal with is the uncertainty, the not knowing. Does he have autism or doesn’t he? Will he grow up to be “normal” (or typical), or will he be awkward around other people? Will he have friends, will he get married and have children, will he be able to have a good job? WHY do I let myself worry about these things when worrying won’t change the outcome one bit? Why do I worry about it when I know that I will love him just the same, no matter what his eventual diagnosis may be? Because I’m a mom, I’m a control freak, and I’m a rotten sinner. That’s why.

I'm being reminded that, yes, this is a growth opportunity - not for me to become stronger or for my faith to grow bigger or for me to learn better coping skills. I don't need better coping skills. I don't need more faith. I don't need to become a stronger person. I need more of Jesus. Times like this - when I feel most weak and vulnerable and anxious - they are opportunities for growth, but not for MY growth. This is a chance for Jesus to grow bigger in me. If there was ever a cure for my anxiety, it would be this: for me to fall down in front of Jesus and say, "I can't do this by myself. I'm tired and I'm afraid and I just need more of You." That's the only kind of growth I need.




So for now, I'm going to enjoy this beautiful child. I don't know what his diagnosis will be, if he ever gets a diagnosis, but it doesn't really matter, does it? He's just a fun kid. And even better, he's my kid. And no diagnosis or less-than-typical behavior could make me love him any less. Sweet Jude...