2006 entries...that never made it here.
Jack’s Journey…and my life as his mommy
January 2006 -
Today was a peek into the future. We have turned a corner. I have normalcy in my sights. Perhaps a day without therapists, special preparation, special everything…today allowed me to believe that this will be a reality. We went to see “Joel, the Singing Cowboy” at Borders. Jack had never seen the show before, but was unphased by its novelty. When Joel had the kids come sit with him on the staired stage, Jack jumped up and wriggled in right between the kids. When they patted their laps, he did too. He didn’t stay seated the entire time, but neither did many of them. Then he went and got a book, came back and asked the boy next to him if he wanted to read the book. There they sat, looking at a book together, each one’s hand on one side of the pages. Kristi was there and she was elbowing me…”He looks great! No one here would even know…” I beamed. I know. What a moment. When we were leaving, he was crying. I asked him why he was crying and he said “I’m sad”. I asked him if it was because he wanted the Thomas book that I wouldn’t buy or because the show was over and he said “the show is over. We come back again?” Sweet thing. This is the first time he has answered a why question, albeit prompted.
We were headed to the grocery, when I offered a visit to Daddy’s office. He was quite agreeable to go see Daddy at work. Once there, he painted a picture and wrote his name on it and gave it to his proud Daddy. Then we headed for the grocery. He informed me that he wanted to “walk in the store”. We even got a balloon, another first! What a great, normal outing. What a great, abnormal day!!
Why did I abandon the journal? I do so love to be able to read the old entries, beaming with pride at the progress our little guy has made. But, selfishly, I’ve kept all those thoughts inside. I wish I’d continued it…But, I’m back now. SO, here goes. Mid June, Jack was doing fabulously. Seriously fabulously. Scott and I were considering taking a vacation, a real destination vacation to the beach, our plans squashed only by the fact that we have no vacation funds. But the point of the discussion was that Jack would enjoy it and, consequently, so would we. Finally. And on a Thursday, Jack had an EDTA IV. This one is rough on him, and the last one he’d had effected him for a week or so, but this one started out mildly. Even through Sunday, he seemed no worse for the wear. Then Monday came and so did a cold. I had caught it too. Never a fever, it was still a nasty cold, assumedly a virus of some sort. I don’t know if the death grip came from being set up poorly by the IV or the recent introduction of Valtrex, but this cold grabbed Jack by the britches and wouldn’t let go. It lasted a good 2 weeks for me. But for Jack, it has been much longer. As recent as yesterday, which was 23 days after the onset of the virus, he had a super screaming fit. He protests everything, and some things rather violently. He’s watching tons of videos (or requesting) and scripting is back again. I so loved when that was gone. It’s hard to have him here, talking about something else, thinking about something else, not listening to you. Especially when this was not an issue just a month ago.
On the plus side of the chart, however, Jack has taken to coloring. He’s been coloring in specific colors on line drawing pictures as well as scribbling on paper with crayons. He’s even requesting to “color”! I’ve never seen him interested in this before. He’s also doing remarkably well in our newest adventure: potty training. He has been in underwears, as he calls them, for a week now, and doing great. He’s able to go longer between toileting, and for the most part is not having any pee accidents. He is currently pooping in his underwear, but hey, one thing at a time. I stocked up on cheap underwear at Sears this week, so it’s ok. And Pull Ups are a thing of the past. Just like that. Gone. Crazy. I’m so proud of him. We started putting the potty out in the den months ago, and then pushed him to go little by little. We worked our way up to a reward system, and he was getting presents for peepeeing in the potty. Then he started to earn tickets, which he put in a silver rabbit bank in his room. He’d get the ticket and bound upstairs to put his ticket in the bank. When he got 20 tickets, he was able to trade his tickets for prizes. That lasted for a while, until we implemented the poopy prize box and pee pee prize box this week for initiated pottying. One morning he managed to squeak out some pee 3 times between 7:50a and 9a to get 3 pieces of a tunnel/bridge for his GeoTrax set. That sneaky kid.
He loves his new teacher, Miss Dana. And, after a small fiasco with his summer EA, we were able to acquire Amanda to attend summer school with him. He had zero issues transitioning into that classroom, even though he’d been in Penni’s room since May of the year before. He still speaks fondly of Miss Penni, saying that he likes her, but he’s quick to add that he likes Miss Dana too. I hope our 4 yr class this fall will be as good of an experience as the last 6 months at Judson have been. I do pray that Linda will come back and be his EA in the fall. I really think that she will do everything possible to fade herself by the end of the year.
For some reason, this month has been extremely tough on me. I’m in a funk. I lost 11 lbs in the Spring, and that made me feel great. Now I’m all yucky and depressed and feel the pounds coming on…possibly the result of what seems like a month long eating fest. It’s hot and I hate hot. We’re broke, with Scott’s sales lower than expected, and money is super tight. Scott and I are in our everything’s ok but it’s not/roommate phase still, and it really eats at me. I want a boyfriend. Specifically, I want him to be my boyfriend. He seems not to need this from me. So we are in different places in our needs for our relationship. I KNOW that money is a concern that feels like a brick on his chest, since our bills don’t stop pouring in, but I know that I would be happier if we had a romantic relationship. I’ve tried to mention this, but it’s just not sinking in. That is surely contributing to my state of mind. And, Jack’s illness this month has been so hard to watch. To know that he’s struggling so much more to get through his day is hard. And, to know that all the progress he’s made is delicately balancing over a chasm of all the old auti behaviors, and that it could all cave in that hole with an illness or some other uncontrollable event is just maddening. You want to believe that he doesn’t toe walk anymore or eye stim or drop toys behind a surface or any of the other things that he “used to do” because he’s “past that”; healthier. Then he gets an insult (I’m thinking virus) and it all comes rushing back. The good skills are still there too, for the most part, but dang! That old stuff was just in the closet, not thrown out with the trash and long gone. I can’t protect him from viruses. I can’t protect him from communicable disease. How vulnerable will he always be?
Mom and Dad called last week after returning home from their 4th of July visit. Mom made a point to tell me what fun she had with Jack while he was playing on the waterslide in the backyard. They took him to see “Cars” also. She said, “I almost took for granted that we were interacting with him and playing with him. Thank you for giving us our grandson. He is so much fun. We are so happy.” What a great moment. Jack is so interactive now. Tonite he reached up at bedtime and grabbed my nose. He pulled and pretended that he had it in my hand. I asked for it back and he said he was going to put it in my pocket (after he realized that he didn’t have any pockets on his pjs). Then he pulled it out of my pocket and put it back on my face. It was sooooo cute. And so typical. He is a beautiful little boy. Some days I try to remind myself that he’s only 4. I notice us all sitting around talking and we’ve all adjusted our recovery goals. Tess, Michelle and I all now say 6 or 7. But really, is 6 or 7 so old if by then he truly does seem just like everyone else? He’s come soooo far since last year. And last year from the year before that. What can we possibly expect in the next 12 months? Donna remarked on the change this summer from last summer, when we were visiting in Boston. At that time, Jack didn’t speak to her, nor did he speak to Wes or Will, he could not answer a Yes question and he scripted constantly. This year he was asking Wes to play with him, speaking to Donna directly, even telling her one day that he loved her, and talking up a tremendous storm. His pretend play is up, he enjoyed bowling tremendously, and even enjoyed Wes sleeping in his room with him. They imitated each other and really seemed to have a good time together. I try to remember these gains, this remarkable progress, in moments like these when the hours are bumpy. The road is still long and straight and heading upward.
Potty boot camp has commenced. Sound the alarm! Actually, it is going quite well. Perhaps that is what happens when you get serious after your child turns 4 and has just transitioned from a six month “ice breaker” into pottying full-on. We went 100% underwear 11 days ago and are not looking back! Up until today, I was doing a large percent of the work. He was essentially scheduled trained for #1, and #2 was an all out disaster. But I found cheap briefs at Sears and was prepared to go the long haul with the BMs in the underwear. Yesterday he had 3 BM accidents in his pants. 3! Whew. Today, we instituted a new policy. His reward for pottying by himself was 2 Peep episodes. Then the video was turned off. It worked great and he pottied on his own to earn his movies. He had 1 accident in his pants late in the afternoon (BM) but it seems like that was the catalyst for change. After that he initiated going to the potty for the BM two times in a row, and the second was monumental (he was mid-meal at dinner!). Great job, Jack!!!
He was also much more like his old self, albeit scripty and a little too protesty. But, all around, he’s much more like his old/new self. Thank goodness. I was really settling into a low state. It is infuriating how my mood ebbs and flows with the tide of his behavior and ability. Poor little guy. He has no idea that he has the ability to swing my mood like a pendulum. If he knew, I’m sure he’d be on his best behavior to allow my best self to be the only presence he has to deal with. My less than best self can be a little unbearable, I’m sure!
Time keeps on ticking. That is for sure. We’ve witnessed an amazing transition for Jack to a “great state of being”. Started in mid September with the introduction of Spironolactone. Jack became a boy with delays. No “issues”, just delays and a rather noticeable love of numbers and time. That sweet boy taught himself how to tell time in little over a week in October. Just did it. I didn’t even see it coming! Sat down with a Dora time telling book each time he was on the potty and before we knew it he was telling time on our Roman numeral kitchen clock! We thoroughly enjoyed the two months or so of all around awesome Jack. And then last Saturday, the protesting returned. Slowly but surely over the week it has become evident of some change. Something is definitely out of whack with his system. If only we had more clues!?! After a predictably rough day at school, which had his new aide sweating, I decided to rotate his antifungals. It feels like yeast. I always second guess my gut, but so many times I’ve been in this place and every time before I have been right with my instinct. So, I took him off of the Nystatin/sporonox combo that he’d been on for 40 days and threw in ketoconazole. I have no idea if this will work. I pray so. Life was so easy and Jack was so happy. Transition was a breeze. Today was day 4 on the keto. I know it takes 4-6 days for a new antifungal to work, so I’m not sure why I’m getting nervous, but I fear that yeast won’t be our culprit and we’ll be in the dark on how to change his treatment. I also dropped his Spironolactone dose from the recently upped 37.5 mg dose back down to the “we know it works” 25 mg dose. I pulled Taurine back a few weeks ago, so to add that back in will be my next mystery play. His teacher and aide were both quite taken aback this week as the protesting raged and, frankly, so was I. The roller coaster is so difficult for us all. How can we get him to such a great place, only to see him take a big step backward?! Poor baby. I so want him to break free of these chains of autism that often bind him. He’s made such great gains…I want it ALL for him. And for us.