What's New With Rex?

I know it's been too long since I have posted an update about Rex.  I cannot believe that he has completed more than another semester of preschool and is doing very well.  Unfortunately, at the start of school in August, we discovered that quite a few of his mastered skills had gone dormant or were lost altogether, so Rex spent some time catching himself back up.  This is a phenomenon also present in neuro-typical children who usually require some weeks at the beginning of a new school year to bring themselves back up to speed academically.

That said, Rex is now solidly into new skill acquisition.  He has mastered taking off his shoes and socks, pedaling and steering a bike (now the two must be combined for full-fledged riding, hopefully by spring), feeding himself different foods from a spoon, identifying a variety of clothing items, taking off and putting on his glasses, and completing inset puzzles.

Behaviorally, Rex has been doing very well.  He still needs eyes on most of the time, primarily because he is curious and strong and does not fully comprehend dangers to himself and destructibility of objects.  When things break or Rex gets hurt these days, it's not usually a function of anger, but a side product of his explorations.  Rex still throws a mighty tantrum when being told no on something he really wants, but these tantrums are largely self-contained now.  What I mean by that is that they look like any neuro-typical kid's tantrums with screaming and thrashing on the floor in hopes of eliciting attention.  And they end with Rex calming himself down and moving on with life.  A recent incident gave me confirmation that Rex, to a great extent, now has control over his behavior.  Rex had finished his sandwich, but signed for more.  I told him the sandwich was gone, but he could have a banana.  This led to a thrash-fest in the kitchen.  Normally, I would have ridden this out, but we were in a bit of a hurry, so I said to Rex, "Do you need to go sit on the couch with Mama or can you calm your body down on your own?"  Complex sentence, I know, but he understood it because he almost instantly stopped his behavior to avoid having to sit with me.  After some praise from me, he ate the banana and we were on our way.  Even the janitorial staff at Rex's school has noticed the changes in him with one of them telling Craig recently, "When Rex started here he had no restraint over himself and now he seems so in control of his body and actions."

At school, Rex has mastered complying with instructions, engaging in appropriate physical interactions with peers, sitting in small groups without disruptive behavior for at least 15 minutes, and physically transitioning from one activity to another without assistance at least 50% of the time.

One thing we have found over the last several months is that about 70% of Rex's undesirable behavior is caused by constipation.  The more stopped up he gets, the less cooperative, connected, calm, and obedient he is.  When he has regular BMs, at least at home, his behavior is wonderful and he is happy, loving, relaxed and listens well.  We are still trying to find the magic formula of supplements that will keep him regular without having a negative effect on other areas of his life - yes, unfortunately, different ingredients and substances in nutrition can benefit one area while hurting another.

Rex does and will always have behaviors that society at large considers strange, if not inappropriate.  We, however, don't even blink an eye anymore when our son goes to bed with a (clean) frying pan instead of a teddy bear or marches off to school carrying a five pound candle.  It's who he is and it actually keeps our life surprising and full of fun.

Rex continues to communicate through sign language and is learning new signs, most recently for frisbee and iPad.  Under the right circumstances, he uses a few words, such as bubble, pop, and bye-bye, but he is far from reliable with his spoken language yet.  However, he vocalizes spontaneously for at least five minutes every hour which is another skill he has mastered.  Rex eats relatively well on his gluten and dairy-free diet, he sleeps through most nights, he loves showers and swinging and the outdoors even on cold, snowy days.

While Rex has been well-attached for a long time, it's no secret that he prefers his daddy over all other people in the world.  However, in the last few months, there's been another push between Rex and me for more closeness and affection.  Sometimes Rex chooses me over Craig now.  When I plant a big kiss on Rex these days, he doesn't just endure it, but we see a tiny, silly smirk on his face that he tries to hide.  When Rex comes home, his eyes briefly light up at the sight of me.  Rex seeks eye contact with me and initiates physical contact as well, sitting snuggled by my side while watching a video or listening to music.  And when Rex needs help to calm or settle, I am the person that can best assist him.

Napping Together

Rex is truly a great boy who works so hard each day to overcome the challenges life presents to him.  He is active, adventurous, joyful, loving, and determined.  It is unthinkable what would have become of him had he remained an orphan.  Instead, we now have the privilege to call him our son and brother and to enjoy the happiness, beauty, and quirks as well as to weather the trials he brings to our life.  We are thankful for this gift.