Air. Surface. Light. Finally coming up! It has been a long time since my last post, I apologize. This is a tough time of year for us with school and endless cold and being stuck indoors. I feel that even when I sit down to write or be productive, it takes 100 times the effort to get something out. Everything moves in slow motion in Iowa in February. But...
Jack is doing great. First the difficult stuff: last I posted we were in need of a bio-miracle. I wish I could say that over the course of the last 8 weeks we conquered the hat and gloves issue, but we did not. Now we are just hanging in there until March, when we can at least count on more 50 degree days that require fewer layers and more general ease being outside! We had a stormy couple of weeks in January while we battled an ear infection and an endless chest cold. The other night when we were brushing Jack's teeth we noticed he finally got one of his back molars. Poor little guy. I had a difficult awareness recently of how hard it must be for him, that because his communication abilities are so delayed there's just no way he or we can explain anything. He can't tell us that his ear hurts or that his throat is sore and he needs a drink of water. Or that when he woke up and it was dark he felt scared because he didn't know where he was for a minute. Or when he walks out of his room crying and rubbing his neck, and it seems like he probably slept on it funny, I say, "Oh honey, does your neck hurt? Let me rub it and it will feel better in a minute." But he doesn't want me to touch it. I know he doesn't know what I'm saying. Or that it will feel better in a few minutes. If his arm falls asleep while he lays on it, he doesn't know that terrible awful tingly feeling is going to go away and he can't receive comfort from me. I just pray in those moments that God would put his arms around my boy and bring comfort. It seems like a bunch of little things - after all, the tingly feeling will go away, the ear infection will eventually subside, awareness that he is still in his familiar bedroom will come and everything will be normal again. But while his mind and his body keep growing, those little things stack up over the course of the day and I know they affect the way he is experiencing life. So we need some more improvement in that receptive-expressive language area and covet your prayers for increased comprehension.
Now the good stuff!
When he is free from an ear infection and nasty coughing that keeps him up all night, and pain from his big boy teeth coming in, he is just a delight. He has been giggly and interactive and playful. He's doing awesome in his
ABA sessions and is picking up all kinds of new stuff, particularly making great strides in imitating and matching pictures with their objects. He loves his train set, jumping on the bed, tackling us, splashing in the tub, reading his books at night and bashing around the Children's Museum. He is forming a bond with Livvie who has declared that she is going to marry her brother Jack. (It nearly brings me to tears as I type that, it is so wonderful.) He is copying our word games. I say, "Jack - who do I love? I....Love...." and he gets a big grin, points at me and says, "DOO!". We do itsy bitsy spider at night, he loves the motions and tries to say a few of the words. I can tell how hard he is trying to get them out and we try to acknowledge his attempts at over-the-top level and make him feel confident about using language. We've suffered some setbacks in food. He is having a lot of trouble using his spoon and is getting picky about what we give him (not so unusual for a not yet 3-year-old, I know). He actually eats better in a high chair. I think he feels comfy and secure in one. But we're trying to treat him like a big boy even if it means less food consumed, more on the floor, and lots of verbal reminders to stay in his chair. We are thinking about trying to get him into a booster seat again, and maybe bringing Livvie into the plan for influence. He seems curious about the things she's doing and she likes being the big sister setting the tone. Win win.
We're having a lot of difficulty with our insurance company. They won't cover any speech therapy, even though recommendations abound from the clinicians we've seen, because his "disability" is developmental and not the result of some sort of accident (like a head injury or a stroke). That is frustrating. We've called numerous times, had various care providers submit claims, tried going through different organizations, and still no luck. Until we can get our state insurance waiver approved (probably not for another year) we might be out of luck. They
will however cover occupational therapy up to 80%. Which is timely, since we've recently run into some new sensory issues and have called on our trusted early education agency for help once again. An occupational therapist from Grantwood AEA, Patty, paid us a visit and spent two hours going over the results of Jack's initial evaluation with me. Where Jack tests out on their assessment tool is exceptionally 'high needs' in both the sensation seeking and sensation sensitive categories. Seems contra, I know. What it means is what we already know about him - he needs intense "punched-up" sensory experiences with high physical input (jumping, climbing, wrestling, swinging, spinning, turning upside down, being pushed, pulled, squished, squeezed) and also lots of structure. Bleck. Wasn't excited to hear that. It's exceptionally hard to provide that at home right now because of lots of factors, not the least of which is two other kids doing completely different things, work, school, etc. But she gave us some really great ideas for ways we can incorporate those kinds of experiences into our daily routine and recommended occupational therapy (specifically,
Sensory Integration Therapy) for him a couple of times a week. There's a bunch of info unpacked there but here's the summation - it's Disney World for Jack. I think I also want sensory integration therapy.
We notice at night time after we've played and wrestled for an hour and he has exerted himself and been bumped and tossed and turned all over, he is much more receptive. His word attempts are clearer. He can much more easily engage in a story or a song or a snuggle game. He is just so happy. In my novel understanding, the principle behind sensory integration therapy in a case like Jack's is that when we feed the proprioceptive "sense of locomotion" need in a child that is understimulated by their environment, he/she can engage more readily in other activities, ie, listen to a story, put together a puzzle, participate in word play. All children have this need to a degree. Some kiddos with autism experience it to a great extent and it can interfere with their ability to concentrate, play, comprehend, follow instructions, solve problems, etc. It's also not something they're likely to just get over. We're beginning to understand it as a physiologic need that has to be met and trying to figure out ways to incorporate more of it during the transitions of the day.
And the biggest update is that Jack Jack will begin preschool in May, and continue into the summer. I am beyond excited about all the structure of the classroom and the learning opportunities that await. I think it will be so good for him. We just need to get through our IEP meeting in March and start laying out the logistics for what the day is going to look like. I would love your prayers for wisdom for us as we start that process. I'm nervous about it. It feels overwhelming and we don't know what we don't know yet. I do feel confident that God has given us so many wonderful people in our lives who love Jack and are looking out for his very best, and we are leaning on all of you.
And finally, thanks for your continued support. Thanks for asking about him. Thanks for all the ways you give us practical help when things are rough. Every time we are at a low you come to our rescue and we see a reflection of Jesus. I could never say just how grateful and how indebted we are to you. Because of the ways you extend your love into our lives, I find the prayers that spill out lately sounding a lot less like: "Oh God, when
when is it going to get better?" to a lot more like: "Oh God, if it never gets better than this,
thank you." What a gift we have in our son, all the things he is teaching us (elaborate blog post on this topic by AJ to follow), and what a gift we have in the friends and family around us. Jesus, we are more aware than ever that everything we have has you in it.
It's frequently used in schedule format so that the child can see what's coming next in their routine, hopefully making transitions a bit easier. This is where it totally broke down for us at home. Showing Jack the pictures of what was next usually provoked a melt down. He didn't want to be reminded that he was going to have to stop playing with Lego blocks soon and get in his booster seat for lunch. Nonetheless, PECS has made its way back into his life and though he put up a bit of fuss about it at first, he's actually latching on to it pretty well. They've been using a triangular felt board with a "First/Then" design, storing the pictures of all kinds of activities on the back of the board. First we do puzzles, then you can have a fruit snack (his ultimate motivator). Last week when we went in, they had the room all set up with toys and puzzles and coloring sheets, with a very structured plan for the order of activities. Under the "First" slot on the board was a picture of building blocks and under the "Then" slot a picture of, what else, fruit snacks. Jack promptly walked over, removed the picture of the blocks, pulled a 2nd fruit snack picture from the back of the board and stuck it under the "First" slot. Then handed it over to the grad assistant. Smartie pants!