Deck and update

So, my very wise 96y/o grandmother wrote me an email recently saying that she loved the pictures of James on the blog, but knew that he couldn't always be that smiley, and wondered how things were really going. I realized that I don't include a lot of real information on here besides pictures of James growing, and I'm not sure why. Maybe because it's hard to describe in words what life is like with James, or I just want to focus on the positive for people who are far away. Local folks see James more often so have a sense of what his abilities are. But I feel like it would be good for me to write more about what James does/doesn't do, not only for those reading, but also for myself. With his 5th Birthday looming, this seems like a good time. So here is some of the update I wrote to Granmag: 

James doesn't talk at all as you know. He doesn't often use consonants in babbling, he just makes vowel sound noise most of the time. He does sometimes throw in a 'B' or "Sh' or 'M,' but not a lot. He understands some words consistently-he clearly knows 'eat' 'down' 'sit' 'stand' 'shoes.' He is hugely communicative (though non-verbally), and it's fun to see his thought processes evolve. He physically communicates--he brings me his cup and pushes me to the fridge, drags me to his chair in the kitchen and pushes me towards the fridge/stove, takes me to his toys to play. In the morning, he comes in, and he used to come to the head of my side of the bed, but now he comes to the foot of the bed, roots around under the covers for my feet, and drags them to the floor! I love that, because he clearly gets that my feet have to be on the floor to get out of bed and play with him/make him breakfast. He builds things with Legos, does puzzles, 'reads' books- sits and looks at the pictures and turns the pages. He loves climbing on furniture. He feeds himself, but is not very adept with utensils, so it's generally very messy, and we usually feed him his cereal/oatmeal in the morning for time's sake. He takes his shoes off when we get home from being out, which (for people who know me) is funny. He just comes in, sits down and does that on his own with no prompting! A couple of weeks ago, he went to the garage door, opened it, walked out and sat in his wagon, which we take to the pool up the street, so I took him swimming! When we go to the grocery store, he helps put food on the conveyor belt at checkout. He's really picking up so much. He shows understanding of the schedule at school and participates in some of the songs with hand motions. He just started signing 'go' when horse back riding. Today when we were playing on the deck, he took my hand and put it on the lid to his water table. I took off the top, but there was no water in it as it's been so hot all summer, we really haven't played with it. James took his cup and poured the water from it into his water table, so he clearly remembered what it was for and had a solution to fix it!

But you're right, he's not always as smiley as I portray him on the blog. He doesn't sleep well, so that's been our ongoing hardest problem. We finally put a gate on his door, so his door is open, but if we close the gate at night, he can't leave his room. He had started getting up at 3/4am and wandering around the house which just isn't safe. Now we leave him to play as long as he's not upset. I can hear him, so I'm still basically awake when he is, but I try to stay in bed as long as he's happy on his own. It leaves me tired, so when I do things like forget to attend a friend's bridal shower, swear up and down I returned my book club book when it's still sitting by my bed, or forget to send project materials to school (all things I've done in the past month!), I hope people don't write me off. 

James gets overstimulated sometimes if there are too many people/too much noise, and he bites his hands--sometimes through the skin drawing blood. He doesn't cry a lot, but he fusses if we aren't cooperating with him and he clearly wants to do something we're not letting him do; or if it's time to leave the house, and he doesn't want to stop what he's doing. It's hard not being able to give him a heads-up that we're leaving in 5 minutes (I do this anyway, even though he doesn't understand) or explain where we're going, like swimming or horse back riding (things he loves). All he knows in that moment is that we're removing him from the fun he's having at home. 

He seems to love school. His teachers and therapists are wonderful, warm and loving. He loves being around the other kids, and walks right in happy in the morning. He has managed to charm most of the staff there. He doesn't nap at school, but usually naps on the weekends at home. He walks everywhere, but isn't running and can't jump. He gets around well otherwise and can climb stairs holding onto a hand or a railing. Still in diapers of course, and really doesn't show any interest/understanding of potty training at all. We obviously hope that will change at some point! 

In terms of medical stuff, we've now had 4 rounds of genetic testing, 3 MRIs, 2 EEGs, and a partridge in a pear tree. We've had multiple Neuro, Audiology, Ophthalmology, and Developmental and other appointments. Every test continues to come back normal, except of course for developmental evaluations. I used to cry when I saw the 'less than 1%' result in every category, but now I know that doesn't sum up James or what he can actually do, and I'm able to let it go. Our neurologist said the simplest but most helpful thing last year, which is that something in James's brain just didn't develop correctly, and right now it's not something we can detect. We'll likely never know exactly what happened. Luckily James doesn't seem to have any medical problems aside from a slightly compromised immune system. He does seem to get sick more often than most kids, which means we're at the pediatrician a lot. Since James can't tell us his symptoms, we err on the side of getting everything checked out!

I'm not sure what else to describe. He doesn't throw tantrums and isn't aggressive. He's very affectionate and huggy, gives kisses, loves rough-housing, bouncing on the bed, being thrown in the air. It's hard to maintain one-sided conversations day in and day out though. I talk to him as if he understands me, but sometimes I feel like I sound crazy! It gets lonely. With kids, he watches them and plays alongside them, but not really with them. It's really interesting to see how other kids react to him. He has some friends who are so sweet with him, but make comments to their parents like: 'James won't talk to me' or 'James can't hear you.' This week, one of his little buddies told James: 'I want you to talk like a big boy now.' 

James clearly knows familiar people--me and John of course--and others we see regularly. He doesn't seem to have much stranger anxiety, and if I wasn't watching him all the time, he would just wander off in stores or at the park. He is so sweet and is very affectionate and loving, but I am jealous of other families who play board games or cards or make-believe with their kids, which I wish I could do with James. He's not always that interactive. Sometimes if I try to insert myself in his play, and add to his Lego structures, he takes off my pieces, pushes me away and gives me a look like 'you're messing up my vision.' It's also hard taking him places like restaurants, libraries, museums, because he doesn't understand if he has to stay still or be quiet, and he's so strong now, that if he doesn't want to do something, he's hard to control! Flying with him or driving long distances is hard, and we'd really like to take more trips. 

Well, hopefully that gives you a better picture of what life is like!

Here are some recent pics:

Our house: Fall