1/25/08
I am often asked if I will return to the blog. Seems many folks would like a look inside our world of autism recovery and daily living to see what goes on. But I haven’t obliged. I’ve kept busy, attempting to balance the demands of treatment with a bit of normalcy. And it has felt good!
But time ticks on. Jack is just a few months shy of his sixth birthday and we are still working at overcoming autism. Still. Guess I thought we’d be done by now. Might sound silly to those who aren’t involved, but all my fellow warrior parents understand just what I mean. We get the diagnosis and we all sign up for our tour of duty. But your paperwork doesn’t tell you when you’ll get to “return home”, if ever. So we make up a time that sounds reasonable. “I’ll put in 3 years and by then, surely, we will have won the war!” Then, at the end of two years, we see that the conflict is taking longer than expected to resolve. “Hmmm,” we think, “maybe I can stick it out another 18 months. Surely by then we’ll have won!” That’s where I am. I’ve figured out that this is definitely a LONG process. There isn’t recovery at 5 for us. 7 or 8 now sounds perfectly reasonable to me! So, I’m regrouping. Oh, and gestating too. Just 11 days to go until we add yet another element into the mix…the bringing home of our latest family addition, our second son, Tyler.
Amidst the impending chaos, the blog has risen to the surface, crying out to me. Perhaps it will ground me…or keep me sane…in the days and weeks ahead of sure change. I don’t know, but since it calls, here I am.
Saturday, March 22, 2008
2007...Plenty to say but no time to say it
Life was moving at a fast pace...and well, I was pregnant. Enough said.
5/24/07
Summertime, and the living is easy. Or at least we hope. Today was the first day of summer break. We all headed over to Kristi’s for a “waterslide party”. Bathing suit and Nemo towel in hand, we headed over for a great day among new friends and old. We were there from 11 until 4, when we shut the place down. Overall, Jack did awesome. He ran around, tried to engage the kids at times, played alone at times, and had a great time. He did start to cry when it was time to leave, and he said that he didn’t like leaving. I was thrilled that he had so much fun. We came home, grabbed a quick bite and were off to Daddy’s double header softball game. Jack was disappointed to learn that he was the only team kid attending tonight, and got bored easily. He was ready to go after 20 minutes or so, but managed to stick it out for the entire 2 hours. He tumbled into bed tonight, wiped out from a funfilled day. No therapy, no special efforts (other than his gfcf lunch!). It almost felt normal! I watched him harder than the other moms did with their own kids, and I worried when he played alone for too long, but then as the kids began to leave and the crowd became more manageable, he came more into his own. The best interaction of the day was in Kristi’s garage with just 5 kids. He was riding a bike and the girls were commanding him to stop/go. He thought it was great. I don’t think his interaction was age appropriate, but it was good enough for today. He’s made giant leaps…and this summer just might allow us to reap the benefits of all of his hard work.
We talked today in the car about fun things that we could do this summer. He loved the idea of his very own “waterslide party” and offered that he wanted cake and ice cream at HIS waterslide party. We talked about going to two twin birthday parties this month and other fun activities, like a visit to the library, zoo and aquarium. There will be group speech and private OT, and summer school with an aide, but the days of scheduling around nap, aba, potty training and various other autism related events are behind us…perhaps temporarily and perhaps for good. I’ll take either one right now!
I’m determined to figure out the root of his scripting, the evil that sets him apart so strongly in social settings. Without it, it is so hard to see his weaknesses. With it, it’s a 2 x 4. So summer, here I come! I’m headed toward the fountain of knowledge, and I’m coming with a sword. Viral, yeast, or something else? I warned Scott that this is my summer goal. He better put his thinking cap on…
5/24/07
Summertime, and the living is easy. Or at least we hope. Today was the first day of summer break. We all headed over to Kristi’s for a “waterslide party”. Bathing suit and Nemo towel in hand, we headed over for a great day among new friends and old. We were there from 11 until 4, when we shut the place down. Overall, Jack did awesome. He ran around, tried to engage the kids at times, played alone at times, and had a great time. He did start to cry when it was time to leave, and he said that he didn’t like leaving. I was thrilled that he had so much fun. We came home, grabbed a quick bite and were off to Daddy’s double header softball game. Jack was disappointed to learn that he was the only team kid attending tonight, and got bored easily. He was ready to go after 20 minutes or so, but managed to stick it out for the entire 2 hours. He tumbled into bed tonight, wiped out from a funfilled day. No therapy, no special efforts (other than his gfcf lunch!). It almost felt normal! I watched him harder than the other moms did with their own kids, and I worried when he played alone for too long, but then as the kids began to leave and the crowd became more manageable, he came more into his own. The best interaction of the day was in Kristi’s garage with just 5 kids. He was riding a bike and the girls were commanding him to stop/go. He thought it was great. I don’t think his interaction was age appropriate, but it was good enough for today. He’s made giant leaps…and this summer just might allow us to reap the benefits of all of his hard work.
We talked today in the car about fun things that we could do this summer. He loved the idea of his very own “waterslide party” and offered that he wanted cake and ice cream at HIS waterslide party. We talked about going to two twin birthday parties this month and other fun activities, like a visit to the library, zoo and aquarium. There will be group speech and private OT, and summer school with an aide, but the days of scheduling around nap, aba, potty training and various other autism related events are behind us…perhaps temporarily and perhaps for good. I’ll take either one right now!
I’m determined to figure out the root of his scripting, the evil that sets him apart so strongly in social settings. Without it, it is so hard to see his weaknesses. With it, it’s a 2 x 4. So summer, here I come! I’m headed toward the fountain of knowledge, and I’m coming with a sword. Viral, yeast, or something else? I warned Scott that this is my summer goal. He better put his thinking cap on…
2006 - Has come and gone!
2006 entries...that never made it here.
Jack’s Journey…and my life as his mommy
January 2006 -
1/7/06
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!!
7/20/06
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.
7/23/06
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!
11/18/06
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.
Jack’s Journey…and my life as his mommy
January 2006 -
1/7/06
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!!
7/20/06
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.
7/23/06
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!
11/18/06
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.
Short and Sweet
Last Entry of 2005...
10/7/05
As I sit down to write, I am saddened by the time that has passed where my thoughts were not captured. Lots has happened during these 3 months. I’ll have to go back and retell it as best as I can. However, since the pizza man will be here in a few minutes, it will have to wait for another day.
10/7/05
As I sit down to write, I am saddened by the time that has passed where my thoughts were not captured. Lots has happened during these 3 months. I’ll have to go back and retell it as best as I can. However, since the pizza man will be here in a few minutes, it will have to wait for another day.
Old Musings...Playing Catch Up
I'm going to play catch up...here are a few entries that never made it to the blog...
7/11/05
The magic continues…Jack’s language “burst” is still a steady stream of activity. At school today, his teacher and aide both commented on how appropriately he is talking! He picked up his art project (a face on a stick) and handed it to me, saying “here you go”. Then he said to me (as I was carrying his backpack) “zip it in the pocket”. He happily hugged his teacher, saying “Bye Miss Penni” and then “Bye kids!” He even tolerated an overpowering hug from his sweet friend Laney. He also sat well during circle time AND…tah dah: rode a tricycle at school for the first time, JUST LIKE THE OTHER KIDS! Woo hoo for Jack! You go, boy! I talked to Jack’s home team ABA consultant tonight and mentioned some of the things he’s been saying. She couldn’t believe the improvement in just 3 weeks since she last saw him. She’s going to come over tomorrow to see it with her own two eyes. It sure is impressive….
Apparently a notice was going around that high chairs are for babies, because now Jack only wants to sit in a “Brown Chair” (our wooden kitchen chair). He started out wanting to sit in “daddy’s chair” but we’ve been able to appease him with a chair of his own in his usual place at the table. So now, if you peer into our kitchen window at mealtime, you’ll see the three of us, happily gathered there, each in our own big person chair. My, what will be next, a big boy bed and big kid underwear? That’s too much to think about!
Jack’s new passion is painting. Not finger painting, of course, for our little sensory guy, but it is exciting nonetheless. Picasso he may not be, but enthusiastic captures it well. He has 10 jars of paint, and loves to use them all. He has a big brush and a small paint brush, and uses them alternating and sometimes simultaneously! Amanda, his school ABA therapist, swears he made a smiley face today while painting, but it just looks too good to believe. I need to see that one with my own two eyes before I declare it an official milestone mastered. We are proud parents around here, beaming with delight as our little boy comes into his own.
Meanwhile, autism has eaten away at my soul. It has taken my easy carefree being and replaced it with a “Mother Warrior”, soapbox in hand, attitude. I feel like I am alienating my friends, and it seems an inevitable destructive path with no alternative route. My occupation has become “autistic child saver” and it has come with a price. I am racing against time, swimming upstream against modern general medicine, and am fighting desperately to keep cynicism and bitterness at bay. I am at peace with our “journey”, and know that I am not weathering this storm alone. As the old saying goes, the footprints in the sand on my journey aren’t mine….for I am being carried. This, I know for sure. Yet, amongst the autism research abstracts, continuous monitoring of Jack’s abilities and weaknesses, and national media suppression of the Truth, I grow a little more tired each day. There is less to give to the other, less immediate causes surrounding me…family, friends, hobbies, even to my husband and, honestly, to myself. I choose to blanket my spirit with other like minds…they know this battle the best and offer support in a way no other can.
7/11/05
The magic continues…Jack’s language “burst” is still a steady stream of activity. At school today, his teacher and aide both commented on how appropriately he is talking! He picked up his art project (a face on a stick) and handed it to me, saying “here you go”. Then he said to me (as I was carrying his backpack) “zip it in the pocket”. He happily hugged his teacher, saying “Bye Miss Penni” and then “Bye kids!” He even tolerated an overpowering hug from his sweet friend Laney. He also sat well during circle time AND…tah dah: rode a tricycle at school for the first time, JUST LIKE THE OTHER KIDS! Woo hoo for Jack! You go, boy! I talked to Jack’s home team ABA consultant tonight and mentioned some of the things he’s been saying. She couldn’t believe the improvement in just 3 weeks since she last saw him. She’s going to come over tomorrow to see it with her own two eyes. It sure is impressive….
Apparently a notice was going around that high chairs are for babies, because now Jack only wants to sit in a “Brown Chair” (our wooden kitchen chair). He started out wanting to sit in “daddy’s chair” but we’ve been able to appease him with a chair of his own in his usual place at the table. So now, if you peer into our kitchen window at mealtime, you’ll see the three of us, happily gathered there, each in our own big person chair. My, what will be next, a big boy bed and big kid underwear? That’s too much to think about!
Jack’s new passion is painting. Not finger painting, of course, for our little sensory guy, but it is exciting nonetheless. Picasso he may not be, but enthusiastic captures it well. He has 10 jars of paint, and loves to use them all. He has a big brush and a small paint brush, and uses them alternating and sometimes simultaneously! Amanda, his school ABA therapist, swears he made a smiley face today while painting, but it just looks too good to believe. I need to see that one with my own two eyes before I declare it an official milestone mastered. We are proud parents around here, beaming with delight as our little boy comes into his own.
Meanwhile, autism has eaten away at my soul. It has taken my easy carefree being and replaced it with a “Mother Warrior”, soapbox in hand, attitude. I feel like I am alienating my friends, and it seems an inevitable destructive path with no alternative route. My occupation has become “autistic child saver” and it has come with a price. I am racing against time, swimming upstream against modern general medicine, and am fighting desperately to keep cynicism and bitterness at bay. I am at peace with our “journey”, and know that I am not weathering this storm alone. As the old saying goes, the footprints in the sand on my journey aren’t mine….for I am being carried. This, I know for sure. Yet, amongst the autism research abstracts, continuous monitoring of Jack’s abilities and weaknesses, and national media suppression of the Truth, I grow a little more tired each day. There is less to give to the other, less immediate causes surrounding me…family, friends, hobbies, even to my husband and, honestly, to myself. I choose to blanket my spirit with other like minds…they know this battle the best and offer support in a way no other can.
Tuesday, August 01, 2006
Wednesday, October 12, 2005
Jack LOVES the camera now!!!
Thanks to treatment with hyperbaric oxygen therapy, Jack now loves to "ham" it up for the camera! Here he is on his homemade crash pad, courtesy of his Mimi, smiling happily and saying "Cheese!" 
Monday, July 04, 2005
Fantastic 4th of July
7/4/05
Fantastic Nite Under the Stars We had a great night tonight...we loaded up our energetic little boy and drove down to the City’s 4th of July event at Crockett Park. I don’t know what Scott was thinking but, like always, my hopes were guardedly high. Last year had been a great success, but this was a new year…and things are not always the same for this little guy. I hoped he wouldn’t get frustrated by the waiting (we were arriving 1.25 hours prior to the launch) or frightened by the fireworks themselves. We told Jack at home that we were going to see the fireworks and he seemed excited, saying “Let’s go to the car. Let’s go see the fireworks.”
We arrived at the park, along with the entire motorized population of Brentwood and Jack said “Look at all the cars!” as he gazed out his window to the stream of cars parked along the road. We were directed to what turned out to be the world’s BEST parking spot, in an adjacent church parking lot, atop a small hill (and near the exit – a bonus!). We began to walk towards Crockett Park, when we passed the church’s playground. There was a big kids area (5-12) and a tot lot (2-5), which turned out to be perfect for Jack. Challenging enough, but nothing dangerous enough to warrant the eagle eye parenting I have grown to anticipate at the playground. It was populated with toddlers and their cautious (and not so cautious) parents. Jack was excited to spend some of our “wait” time here. We watched him try out each area of the playground, even eyeballing his new found interest, the sandbox. The weather was fabulous for a Tennessee summer nite, 78 degrees with a breeze, and this was an “easy” moment in our parenting. Jack looked like a typical kid, perhaps a bit on the anxious side, nervously yelling “Mommy!” when some big kids stormed the play area and ran up the slide. All in all, he was holding his own just fine. About 30 minutes before the fireworks were scheduled to begin, the playground cleared out, and we had the whole tot lot to ourselves. It was a neat moment, Scott and I standing, chatting, while Jack climbed and slid and hollered for our attention. Then Ben appeared, 6.5 and friendly. He was alone with his mom, who had set up firework viewing camp in the big kid playground area and was engrossed in a cell phone conversation. Jack took to Ben right away. After a few minutes, Ben was performing for Jack, jumping off the end of the slide as Jack would yell “Do it again!”. The boys really interacted great!!! Jack was following Ben's every move. Ben was standing at the bottom of the slide making a tunnel for Jack, and Jack would slide through and shout "Let's do it again!". Scott asked if Jack always played this great with other kids. I was proud of that moment for Jack and glad that, for once, Scott was getting to see an awesome moment, instead of only hearing about it back at home at the day’s end.
Then the fireworks started and Jack snuggled into my lap on our blanket. We too decided just to set up camp in the big kid playground area, which happened to have the perfect view of the fireworks and easy access to the car! Well, Jack just LOVED the fireworks. He said "More loud ones!" and "I want to see more fireworks!" He was so sad when it ended, but transitioned nicely to the car. Scott got to see him interact with the boy and the mom said she couldn't tell Jack was autistic (God love 'em for their ignorance!) A great family nite for us and a perfect outing! Yay! A 4th of July for the recordbooks!
Saturday, June 11, 2005
Journal Jan - May 2005
January 2005 -
12/1/04
Lots of changes in the last few weeks. Jack was really doing so well. Late October and November were great. There’s an awesome little boy in there. Now to get him to the surface. We’re banking on the fact that we are going to hit a rough patch that, once beyond, will bring amazing things. I hope we are not disappointed. We’re counting on this!
Jack’s teachers, the school days of the 18th and 19th, were beside themselves with praise for Jack’s behavior, compliance and overall “typical-ness”. I am so proud of that! Jack sat in circle time without being prompted, attended perfectly during Flashcards and all around was a sweet boy with a special spark in his eye that his teachers said they had not seen before.
We started TD-DMPS 3 days following the first B-12 shot. Didn’t see anything good or bad. That sounds good to me. Then on the 23rd, just around the time we arrived at MeeMee’s for Thanksgiving, Jack started screaming more. He was a bit resistant when asked to do some things, like sing, which he had been willingly been doing for the past few weeks. We assume the change is yeast related, as DMPS can trigger yeast growth. We had also dropped the dose of the Nystatin from 8 tsp/day to 1.5 tsp/day maintenance dose. By the time we got home on Sunday, the 28th, there was no guessing that something was going on and it wasn’t necessarily going to be easy to deal with. Monday afternoon ABA session was ugly, as were ALL therapy sessions Tues & Wed. Additionally, we are seeing more screaming and increased difficulty in transitioning. Meltdowns at bath time, etc. Oh boy. What fun.
Our OATS results show elevated yeast and bacteria. 2 new scripts. Hoping that what we are seeing is yeast related and will dissipate with the Diflucan, but also preparing ourselves for a bumpy ride for 2 or 3 months if this is DMPS related. That would be all of December, January and possibly February until there might be light at the tunnel’s end. If that’s the case, it’s going to be one dark winter. Ugh.
A little note about the B-12 shots. Seems I’m an idiot. Correction: seems I am truly a non-medical not-even-able-to-be-called-an-amateur uneducated idiot. In my defense, the pharmacy sends a vial that says .3cc per day and a bag of syringes. That’s it. No instructions. Nonetheless, we have been dosing at 3 units (the syringe, of course, uses different language). Figured out yesterday, 3 weeks or so into the shots that we are supposed to be giving 30 units. What a big fat duh!!!!!!!! No wonder we didn’t see any magic.
Going to an ENT doc on Friday. Had some nose issues that just won’t quit. The most bothersome is a feeling that my nasal cavity is constantly closed. This may be due to an allergy issue, which would be another doc altogether. Might be caused by the enzymes. It is driving me crazy! I don’t have time to have ISSUES!
NEWEST INTEREST FOR JACK: Dora! Especially the Dora episode with the TRAINS. Go figure.
12/12/04
One month since the start of DMPS. While he hasn’t begun rattling off trigonometry equations, he has not begun biting himself and running up the walls either. Guess I’ll take that. We’ve seen a slow and steady consistent measure of improvement. Is it greater or faster than what we’ve previously seen? It sure is hard to tell. Could this be the greatest placebo trial?? He was a bit more stimmy a few weeks in, but that seems to have leveled off at a somewhat “normal” state.
1/12/05
The ride of a lifetime…every day. Today started out like many others. Busy! Wednesday is our early day: we have to be out by 8a. At 7:05 THIS morning, we were all still tucked safely in our beds with visions of sugarplums. I sprung out of bed and got dressed, foregoing the a.m. shower (again) due to time constraints and lack of desire (we’ve been up until midnight or later each night this week watching Season 2 of 24) and raced to fetch sweet Jack and hurl him gently into our Wednesday abbreviated morning routine. One thing to note: he was awake, but was not scripting. I heard a peep once or twice, but no Dora “blah blah blah” at all. Not sure of what to make of that, so I’ll just note it. He brought his blanket and pacie with him to the rocking chair (also less than usual) and we rocked for a bit in silence until he requested going downstairs to watch a movie (daily occurrence). Cuddling and quiet on the couch, I turned on Sesame Street, which was watched with limited enthusiasm. We rushed through the morning routine and I wondered, for a moment, what the day would bring. OT and ST were very positive experiences. Susan commented on how engaged and happy Jack was today, which I had noticed yesterday all day! So giggly, in an appropriate way. Such big smiles. Such LONG looks. Joy. Since we wrap up early on Wed., I thought we’d dash over to the big park for some recreation. Oddly enough, it is 68 degrees here today. There were only 2 kids at the park, and they looked just slightly younger than Jack. They were chasing each other down the slides, giggling happily, clearly excited to play together. A few times one would cry out to their Mom, “But she won’t slide with me. I want her to!” Jack had a less than peak performance on this day. He chose to run laps around the perimeter of the park on the sidewalk, scripting Dora as he went. Last summer he loved to play on the equipment here and could swing for :30 at a time! Today he barely gave the play area a nod. I finally intervened, to his dismay, and interrupted him every ¼ of the circle and made him swing or climb or slide. Once completed, he could go back to the perimeter. He hated the intervention, and collapsed and screamed each time I forced him to “play”. Other kids his age came to the park, and my attention to his abnormality at the play area increased. Finally I’d had all I could take. I directed him, unwilling to leave, to the car and buckled him into his car seat. On the way home my eyes welled up with tears for the little boy he isn’t. Partly for me but mostly for him. It’s amazing how different I can feel about him and his autism based solely upon what benchmark I am using to measure his progress. At home, I think he’s doing fantastic. I question the need for so much therapy. I imagine him as a normal little school age boy doing everyday school age things. At clinic I see his progress. I see some of his deficits, but he’s talking! I see those who haven’t made as much progress, especially those who are older, and I am relieved that he has overcome so much this year. But then I go to the playground and see him against those he will truly be measured against, the only true benchmark of what is “typical” and I am crushed. Not only doesn’t he care about playing there the way 100% of the other children want to, but he is oblivious to their existence. A truly autonomous presence. The world is flying by and he is unaware. It is moments like this when I do question what gains we can make physically through biomed intervention. Surely it has its limitations. Perhaps his brain is just wired differently and all the effort in the world won’t change that. Moments like these deem days like today HARD DAYS. Yet today is no different than yesterday, which was a good day. But my perspective has shifted. I have caused today to be judged a BAD DAY. It’s me. Perhaps solely within my control. But how?
2/14/05
Valentine’s Day…and I’m ever so in love, with my baby boy. So much has happened over the last 2 months. Gains almost immeasurable! From the benefits of the MB12, to the lows of a massively bad diarrhea combination of Rotavirus and an Antibiotic (13 days of bottom trouble), and a definite casein reaction last week, Jack is in a new place developmentally. He is doing so well. He still does best engaging when it is just the two of us. I am his confidant. Today we celebrated Valentine’s Day with a picnic at the zoo. It was charming. In the 60s, breezy and clear, it was the perfect day to spend some time (mid Winter) outdoors! With a view of zebra and ostrich, we ate our lunch at a picnic table. Jack sat next to me, like a big kid, properly on the bench, with his hand resting on my arm, perhaps for comfort. A few times he exclaimed “Happy Valentine!” and I beamed. We looked like any other family at that moment. We walked around the zoo and played for a bit at the playground before we had to cut our outing short to adhere to our rigid schedule. Nap by 1:30 to be up by 4 to be ready for ABA (session 2 of the day) at 4:15. He has no idea how his days differ from his peers.
3/8/05
Birthday party, take 1. I cried as I placed him in his crib tonight. He was having such an awesome night. He had a birthday party with his Grandparents and he got it. He knew there were presents and he opened them eagerly. He saw his new viewmaster (which he calls a telescope) and peered in. He commented on Thomas and then Dora and said "It's SO beautiful!" as he looked at the pictures. Then they brought out a shiny new tricycle and he jumped up excitedly. He rode it for a few minutes and then was back to his "telescope". He enjoyed his "birthday cake" and had a great time. What a difference from a year ago. What a difference from Christmas, even. Yet, as I tucked him in to bed and said "Bye Bye. See you Sunday." my heart grew heavy. He has no idea that we are leaving and won't know why we aren't here. I'm sure all kids go through this at some point in toddlerhood, but it is painful nonetheless. Hopefully there won't be too many tough moments for the three of them until we return.
3/14/05
We all survived…and with flying colors! Mom & Dad were awesome parent replacements, stepping in without missing a beat. Jack did great. They noted that he seemed a little bit quieter and, perhaps, somber on the last day, but overall did wonderfully! There WAS the little issue of his all out panic attack in the tub, but other than that he has escaped unscathed! And Mommy fared well also. The first night there, I awoke with an emptiness in my heart. As though I had left something behind that I was responsible for. But once I began day 2, I realized that this trip was truly a gift from my parents. Their willingness to take on all of the responsibility of his care should not be received lightly. And from that point on I enjoyed myself to the fullest. Scott and I reconnected, I was pampered, and it was relaxing. I know that these moments will be few and far between for now, so I embraced my freedom. The last day there, Mom had Jack say a few words over the phone. He sounded so little! I had never heard him on the phone before. It was precious. And I missed him even more! The homecoming was sweet, and he was all smiles as we came into view at the airport. We were happy to be reunited!!! And Mom & Dad feel even closer to Jack than before, I suspect. The trip was awesome for us all.
3/18/05
Jack astounded us tonight. We went to Morri Faith’s birthday party at Pump It Up. I did not have great expectations for Jack’s participation there, since he has always adamantly refused to play on any blowup structure for as long as we have been around them: at 18 months at his school’s Fall Festival, this past Halloween at Julia Johnson’s birthday party and just a few weeks ago at playgroup, where a family had a small version of one in their den. But we went anyway, hoping for something good. Jack toured the facility privately before the party, and immediately started saying “No thank you!” as we coached him to try out the equipment. But then the kids came running in and he saw them sliding down the 15 foot slide. His eyes were as big as saucers! I asked him if he wanted to try it and he said “Yes!”. I still didn’t believe he’d do it, but I carried him up the slide. He LOVED it!!! Over the course of the next hour and 15 minutes, he conquered any previous fears of the blowup jumping equipment! By the night’s end, he had tackled the 15 foot slide ALONE!!!! He jumped in the enclosed jumper and rolled off the center mountain! He mastered the 4 ft. inflated rock wall in the obstacle course and was trying to accomplish the 10 ft wall! What an astonishing night! And of course, me without my camera (I thought there wouldn’t be anything to see!). Shame on me and hurray for Super Jack! He was awesome! We were the most proud parents…
3/28/05
Happy Easter! We just returned from our annual Easter trip to Meemaw’s. This year we actually “hid” eggs in the yard for Jack. He had a good time hunting them, thanks to Dora (and Grandma & Grandpa who sent the video) who explained the art of hunting eggs in “Dora’s Egg Hunt”. A current classic. Jack’s scripting is up again, so we are hearing all about the egg hunt with Dora. He did well traveling and really enjoyed having the DVD player in the car. He was disappointed today to see that his “computer” was gone when we went out to run errands.
He is suffering from diarrhea again. I’ve now concluded that he cannot tolerate Vancomycin. We are supposed to be on a 3x day every other day regimen. I have him on either 1x or 2x day every other day and he is still going 5-6 times per day. He’s eaten up with diaper rash and has taken to lying to me when asked if he has poopy pants, since the changing itself is miserable (I guess I don’t blame him). We are going to have to stop the Vancomycin and wait for our consult on 4/18.
I cannot believe we are 2 weeks away from transitioning to Metro. The heat is on. I am overwhelmed with the prospect of singlehandedly fighting the School District for his services. I’m not sure this advocate is helping as much as I need. Why in the world are we expected to represent ourselves against people who do this on a daily basis? If I were to show up in court wanting to defend myself, people would think I was a loon! But here it is expected. It is an absolute absurdity. I pray that our experience defies the norm. Perhaps I’ve built it up to be worse than it will be. I can only hope.
In a last ditch attempt to utilize TEIS’ services, we have a feeding evaluation at Easter Seals on Wednesday. I hope they can assist us in some way. Jack’s food selections are so narrow. It makes mealtime a little bit of a battle, even without any progress! He’s down to eating chicken nuggets or pb&J for meals and, of course, he wants fries. Other than that, or pancakes or waffles, he’ll eat fruit. That is about it. Chips and cookies too, but nothing else. No meat, no alternative bread, no vegetables…I could go on. We need some advice that will work for Jack’s combination of sensory issues and autism.
4/17/05
Ugh. Whew. CALGON!!! This would be one of the darker moments on the journey. We’re in the middle of a therapeutic-custody battle with Metro over Jack’s proposed IEP and services, they are now bringing in the “heavy” for round two (the Spec. Ed. Director) and Jack’s having a bit of a rough spell. It sometimes feels like it is just too much! I went out this afternoon to run a quick errand and found myself, on a beautiful Sunday afternoon, tempted with the notion of driving forever! Maybe not forever, but for a good long while to a destination unknown. What is that? Stress to the nth degree? I would actually choose to abandon my family and drive without purpose? This is not a good sign.
Note to self, in my next life, I’m going to set up a system by which all special needs families receive an Advocate, at no cost, to deal with the school system. This is Board of Ed vs. Joe Nobody and Joe isn’t feeling too good about the whole thing.
Jack is off. I can’t exactly put my finger on it, but it seems a bit yeasty. Screamy, less compliant, scripting to the point that he doesn’t always hear you speak, constantly playing trains, getting in movie jags…for 2 weeks straight it was only Thomas, now it is Baby Einstein (particularly the original, which features 15 different languages, which is getting put away tomorrow for good!) and an overall demeanor that is worse than what we saw a week or 10 days ago. That was bliss! He was so awesome! Much more typical. I did read tonight that kids who are getting better (typically through chelation) either look ADHD, Tourettes or OCD. And the author claimed that this behavior is transitional as they recover. Once recovered, these behaviors subside. IF this is true, and this is what’s happening, I’d classify him as mostly OCD with a little ADHD. Eloise is here today and she commented that he didn’t seem “right”. Said he seemed hyper and screamy. You know, it’s bad enough when it eats at you all day…but it is just plain over the top when other people, even with the best intentions, point it out.
His birthday was a success. He seemed to enjoy having the kids over, played well outside with them and even chose to sit outside with them over his standard place at the kitchen table! I’m glad I had the party. Funny that I had considered not doing it. Hindsight is an interesting perspective. I wonder what all of this will look like with hindsight glasses on?
4th month chelation records have come in the mail. What a depressing moment! Nothing remarkable to share. Consult w/Scott Smith tomorrow. Perhaps he’ll shed some insight. I keep hanging my hat on the thought that Dr. McCandless’ granddaughter didn’t excrete until 9 months into the process. Gotta keep having hope. And he’s really a different kid now. Surely the DMPS is playing a role in that.
5/13/05
Medical attention week here on the Halbert Channel! Sunday afternoon Jack had a hard time waking from his nap. Tuesday morning we had the same super-sleepy disinterested little fellow, coupled with blue fingers and ashen lips. A pediatric visit and blood draw found nothing. A consult with his Autism doctor revealed DMPS the likely culprit. We are watching him like a hawk over the next few days to determine any changes in treatment… Then Thursday, in perhaps a peak moment of exploration or boredom, our sweet son shoved a dried black bean up his nose. Just like that…we were off to the ER. This was traumatic for Jack, things like wearing a fingertip pulse occ monitor, enduring a bp cuff on his lower leg…were just the beginning of a tough afternoon, as he was wrapped mummy-style in a sheet, placed on his back on a bed and “tortured” with a nasal speculum and otoscope. All to determine that the bean was no longer lodged in his nose. Yup! The bean turned up at home at the top of the garage stairs. I’m wondering if that will be the last time we make that trip!
Jack seemed to improve between that entry, 4/17 and a week or so ago. My guess is that the full two week course of Vancomycin and Sporonox were quite effective. However, a few days ago we went back to the every other day regimen, and now it is a tough time behaviorally for Jack again. Lots of screaming, crying with transition…today he protested vehemently as we turned into the Grocery parking lot, something we do often after school. Seems like he wants to be home…in his safe environment, playing with trains or with a favorite, predictable electronic toy/computer game. Poor baby. Wonder what he’s feeling. Mom & Dad bought him a new pair of sneakers a couple weeks back. He refused to wear them, crying “shoes OFF!” over and over. So, I took them back and bought a second pair, these a little more like the current pair. I put them on him this morning. He wore them for a few minutes until he noticed them. And then we were back to the new shoe protest all over again. It seems like it will be a miracle if he gets better on days like today. He’s pushing, kicking, hitting. I guess he sounds like a typical 3 yr old, but he’s anything but. Yesterday was the school picnic. He screamed to go to the car, had tremendous difficulty transitioning to the picnic scene. Finally agreed to eat ONLY if he could sit in my lap. Thirty minutes in to an hour and a half event, he was begging to go home. Not his best day.
On a positive note, I’m hearing “MOMMY!” often. Sometimes he’s calling me and sometimes he’s addressing me. It’s really great. Yesterday he said “Come with me, Mommy, please.” Previously he would label me, but not call me or address me by name. It sure sounds sweet. A diamond amongst the rough!
Creating a Blog
A friend asked if I had started a blog. I was puzzled. I have a personal journal of our journey to recover Jack, but I haven't shared it. Why not? Wouldn't other people want to know what we're doing, what works, what our struggles and joys are? So, with Jack in a morning ABA session, I set out to create a blog. Here goes. Hope you like it, whoever "you" turns out to be. Bux, you may be the only one reading! Thanks for your continued support, my friend. I love you.
Journal Sept. thru Dec. 2004
9/11/04
Today marks 3 years since our generation’s American Tragedy. I don’t often think of it…that tragic day where we realized that this strong country is vulnerable, weak, penetrable. I remember, barely 2 months pregnant, wondering if this was a world I wanted to bring an innocent new baby into. Now we run about in our busy lives, listening to the Republicans defend our position at war, the Democrats scoffing at it, a nation divided amidst the appointment of a new President. Yet, does there truly exist, amongst the American heart, a fear of further tremendous destruction here at home? I sincerely doubt it. Yet, today, as we are so vividly reminded through scenes of that dreaded day, our hearts stop, but for a moment, to worry as mothers, fathers, friends and family for the safety of our own.
We have put our baby through his own “hell”. He has started “school”. Jack has returned to Forest Hills Baptist Church’s Mothers’ Day Out program for his second year. Perhaps his new found awareness of self has made this a bit more difficult. Whatever the reason, I have watched him suffer these last two weeks. To soften the blow, I sent a therapist to his class to “shadow” him each day. I have found that having eyes in the classroom is a blessing and a curse. I am glad to know that someone, solely with his interest in mind, is within arm’s reach of my baby. But, to know that he is lying on the floor, failing to participate, holding his beloved blanket and pacie, moves me to tears. Is this cruel and unusual punishment, masked by the theory of “socializing” him for his greater good? He is a changed boy since that first day of school last week. He demands his blanket and pacie at home at all times and oftentimes soothes himself by saying “It’s okay?” over and over. The reports do show that he is making progress at school, but what will the cost be? The anxiety bothers me greatly. My sweet, usually happy boy. Unsettled by the unsettling of his little life.
His language is building! He is using names to request, when the motivation is high. Yesterday he could not find his pacie. “Wuh wuh wuh blue pacie?” he stated (his version of where is blue pacie). Then he said “Vovvy…pacie!” When I produced his pacie he said with glee, “There it is!”. The makings of sweet conversation!
9/30/04
We’re chugging along at the slow pace of progress and becoming disenchanted with the current pace (which I feel is a good thing). Time to put the pedal to the metal. Jack is 2 and a half. Rapidly approaching three, where he’ll be thrust into Metro’s land of opportunity (sarcasm). Mom and Dad are asking me to pick out a new chandelier for Christmas, and I am suddenly burdened by the expenses of non-material things. We MUST take him to an expert. We must tackle his underlying metabolic/biomedical issues. Correcting the myriad of issues going on biochemically will cure the ailments, not treat the symptoms. That is where true healing takes place for this dreaded disease. And time is fleeting…with each passing day he falls further behind in our race to “catch up”, all the while his brain becoming less and less malleable, neurologically speaking. We need to be moving with lightning speed. Days are turning into months. We’ve been at this formally for 6 months already. What have we accomplished?
10/12/04
Officially on the downward turn toward 3. Yikes! Only 6 more months of all of this generous intervention. And we seem to have some momentum going! Jack is surprising us daily. Today he finished therapy and, while heading for me, was intercepted by Daddy. Daddy scooped him up and kissed him. Jack obliged him with a returned exchange, then turned to me and said “Want Vovvy!” and leaned out to me with outstretched arms. Delightfully delicious.
School has become a respite for me and a tolerable morning for Jack. Teacher reports indicate that he is settling in “nicely” although observational reports seem to reflect a less rosy picture. He is starting to tolerate some peer interaction during play time and has definitely become accustomed to the routine of the day. Naptime is a bit of a struggle. Friday he was put in a crib across the hall from the classroom, where he promptly went to sleep. I’m left wondering if it would be better for all (except me) if I were to pick him up after lunch to avoid the nap fiasco in its entirety.
Jack spontaneously pointed on Saturday night. One might consider this a pivotal moment in his developmental timeline. Seems, if only for one brief moment, that he figured out that a) he needed our attention, b) could command our attention with a gesture and c) picked the correct gesture to summons our attention! Hooray! Something that seems so very simple is such a struggle for these sweet little ones. We have not seen him again do this spontaneously but are now encouraging pointing in general in hopes of solidifying the relationship of pointing to having his needs met.
It seems that I have not journaled of Jack’s new passion: Thomas the Tank Engine. It has been about 4 weeks since we went to the Stansbury’s house for dinner. Tate & Grant have a large train set in their playroom and, during the course of the evening, the boys all watched a Thomas movie together. Jack was mesmerized. By the second week thereafter, all we heard was “Thomas” this and “Thomas” that. Now from the first word of the day to the last (almost literally) we hear: “watch Thomas. Okay!” or “It’s Thomas. Hiya Thomas. Whoo whoo.” “It’s Percy. Hiya Percy. Whoo whoo.” “It’s Jays (James). Hiya Jays. Whoo Whoo.” He talks to himself about the Island of Sodor and quotes lines from the movie (“how dare he say we’ll do. How dare he say we’ll do). It’s typical two and autistical scripting all at the same time. He LOVES to go to Barnes and Noble to play with the Thomas trains there. He now “works” for Thomas time during therapy. It’s sweet and all boy. Christmas this year will bring big surprises for Jack!
11/6/04
We went to visit Grandma & Grandpa in October. We had a great visit. Mom & Dad commented just how “different” he seemed. He was truly a delight. However, mid-trip, Jack went for a swim with Grandma in the pool. He enjoyed himself thoroughly, but we saw immediate behaviors associated with exposure to the chlorine. These symptoms are similar to what we see/have seen when Jack has a phenolic reaction to foods. He was madly giggling, hyper, stimmy…and it lasted for about a week (he went in the pool two days in a row). It was tough to watch what was almost like a regression! Thankfully, most of the symptoms have now subsided (except occasional head shaking) a month later. Phenol sulfertranferese. Can’t explain it…just know that is at the core of the stimmy weird behavior. Hope we can fix it!
11/10/04
One month after we began treating yeast (on a whim, mind you) we have a new little boy with us. Other than his obvious language delays, he is doing remarkably well!!! He is “just one of the kids” at school, participating beautifully in therapy, and an all around delight to have around! His speech teacher observed him in class on Friday. She called me to discuss her findings. She was amazed at how well he fit in and “flowed” with the rest of the kids. Other than seeking out his teacher’s hand to walk to the gym and choosing her lap instead of the floor for story time (perhaps he’s just clever!), he would be hard to pick out by the untrained eye. What great news! And in therapy, he’s doing things that a month ago were impossible (and had been that way all summer). Imitation was a lingering concern as we went into month 5 of his individual ABA therapy. However, in October (month 6), imitation truly blossomed! Now he is happy to imitate you touching your nose, rubbing your tummy, patting your head, or whatever else you show him at a mere command of “Do this!”. What a HUGE developmental leap! At home, transitions that previously seemed “typical two” (But obviously weren’t) are now a thing of the past. No more shrieking at the mention of bathtime, but instead a willing toddler who claims “pee pee potty” as we enter the bathroom. (No, he has no idea about GOING potty, we are taking baby steps!) Now when movies end, he yells “Yay!” instead of crying as though his beloved dog had died. He is chasing the dog and giggling with glee. He is happy to go to the grocery store to ride the train, willing to come inside after a car ride without hesitation and loves to “play trains” in the playroom. Pointing is a regular occurance, and he is now starting to use carryover phrases like “It’s a two” instead of just “two”. The effects of 30 days of yeast treatment is ASTOUNDING!!! We finally feel like we are gaining momentum. So, what’s next? Well, it’s time to rock the boat, of course!
I had a consult with Scott Smith, P.A. at Dr. Bradstreet’s office on the 3rd. This is Phase II. Now bring in the big guns…cuz we’re fighting the big boys now! Scott thinks that Jack is carrying a significant heavy metal load. He recommended that we begin chelating right away. So, that’s what we’ll do. We will keep most of our protocol the same, with one major difference. We will adjust our Nystatin dosage significantly. Dr. “Crap”delaine was dosing Jack at 1,000,000 units per day. Dr. Bradstreet had a cow when he heard that! The most he is comfortable prescribing is 250,000 units per day. Another nail in Crapdelaine’s coffin. What is he doing over there? Thank God that He directed us to Bradstreet. He’s currently treating 5,000 kids worldwide. What an amazing database of symptoms AND treatment!?! I imagine that we will see, over the next few months, the treatment rollercoaster again emerge. I am ready this time. I know what “pretty good” looks like in Jack, and I can’t wait to see what “Great” or perhaps, “Recovered” looks like. I’m willing to take “difficult” for a time if it gets us to greatness. Perhaps I should bookmark this line, to refer back to in the days ahead!
11/12/04
First B12 injection went super smoothly last night. Mommy was uptight, Daddy thought he was in private practice and Jack was none the wiser. NEVER EVEN FELT IT! What a blessing! I do feel like we are getting a little “alternative”, if you will. Next we’ll be rubbing cow spleen on his backside or some other black magic treatment! No reaction to the B12 and the injection site was undetectable by morning. Hurray for the small victories!
On the way into school today, Jack and classmate Grant were entering the building at the same time. Jack saw Grant and made significant eye contact. I prompted him to say “Hi” and Jack sweetly said “Hi”. Grant said a shy “hi” back. Awww.
12/1/04
Lots of changes in the last few weeks. Jack was really doing so well. Late October and November were great. There’s an awesome little boy in there. Now to get him to the surface. We’re banking on the fact that we are going to hit a rough patch that, once beyond, will bring amazing things. I hope we are not disappointed. We’re counting on this!
Jack’s teachers, the school days of the 18th and 19th, were beside themselves with praise for Jack’s behavior, compliance and overall “typical-ness”. I am so proud of that! Jack sat in circle time without being prompted, attended perfectly during Flashcards and all around was a sweet boy with a special spark in his eye that his teachers said they had not seen before.
We started TD-DMPS 3 days following the first B-12 shot. Didn’t see anything good or bad. That sounds good to me. Then on the 23rd, just around the time we arrived at MeeMee’s for Thanksgiving, Jack started screaming more. He was a bit resistant when asked to do some things, like sing, which he had been willingly been doing for the past few weeks. We assume the change is yeast related, as DMPS can trigger yeast growth. We had also dropped the dose of the Nystatin from 8 tsp/day to 1.5 tsp/day maintenance dose. By the time we got home on Sunday, the 28th, there was no guessing that something was going on and it wasn’t necessarily going to be easy to deal with. Monday afternoon ABA session was ugly, as were ALL therapy sessions Tues & Wed. Additionally, we are seeing more screaming and increased difficulty in transitioning. Meltdowns at bathtime, etc. Oh boy. What fun.
Our OATS results show elevated yeast and bacteria. 2 new scripts. Hoping that what we are seeing is yeast related and will dissipate with the Diflucan, but also preparing ourselves for a bumpy ride for 2 or 3 months if this is DMPS related. That would be all of December, January and possibly February until there might be light at the tunnel’s end. If that’s the case, it’s going to be one dark winter. Ugh.
A little note about the B-12 shots. Seems I’m an idiot. Correction: seems I am truly a non-medical not-even-able-to-be-called-an-amateur uneducated idiot. In my defense, the pharmacy sends a vial that says .3cc per day and a bag of syringes. That’s it. No instructions. Nonetheless, we have been dosing at 3 units (the syringe, of course, uses different language). Figured out yesterday, 3 weeks or so into the shots that we are supposed to be giving 30 units. What a big fat duh!!!!!!!! No wonder we didn’t see any magic.
Going to an ENT doc on Friday. Had some nose issues that just won’t quit. The most bothersome is a feeling that my nasal cavity is constantly closed. This may be due to an allergy issue, which would be another doc altogether. Might be caused by the enzymes. It is driving me crazy! I don’t have time to have ISSUES!
NEWEST INTEREST FOR JACK: Dora! Especially the Dora episode with the TRAINS. Go figure.
12/12/04
One month since the start of DMPS. While he hasn’t begun rattling off trigonometry equations, he has not begun biting himself and running up the walls either. Guess I’ll take that. We’ve seen a slow and steady consistent measure of improvement. Is it greater or faster than what we’ve previously seen? It sure is hard to tell. Could this be the greatest placebo trial?? He was a bit more stimmy a few weeks in, but that seems to have leveled off at a somewhat “normal” state.
Journal from August 04
8/2/04
Today marked an anniversary for Jack – it has been 1 year since he started therapy. It started innocently enough at 15 months, with a referral to our Early Intervention Program by our Pediatrician when Jack had no words at his 15 month appointment. A speech delay, he suspected, citing the remarkable progress his own son had made in speech therapy, “graduating” in just 9 months at age 3. Calls were made, appointments set, an evaluation made, and then the “global developmental delay” term started floating around. I don’t think we were all that worried at first. Speech therapy twice per week and Specialized Instruction twice weekly also. The evaluation cited receptive and expressive language skills at 10 months, cognitive skills at 10 months, adaptive skills at 12 months, gross motor skills at 11 months, fine motor skills at 17-18 months and personal-social skills at 10 months using the Battelle Developmental Inventory (age at testing: 15 months). The Speech Pathologist further assessed Jack’s language skills at that time as receptive language – 6 mo. and expressive language – 5 mo. So, today he underwent an evaluation with the same evaluator one year later. I will receive the results of this evaluation tomorrow. Also, his current Speech Language Pathologist will provide us with an assessment that she has conducted recently to determine Jack’s speech skills to date. I think that we will see some awesome measurable growth from these reports. We have 9 more months to put the pedal to the medal and get as much from the outstanding therapy programs that we have right now. I figured out that TEIS is paying for $575.00 per week of services for our one little boy! That is almost $30,000 per year! I am so grateful to the TEIS program.
And only 9 months until Metro Schools take over. Ugh. I am prepared to battle. I am gathering examples of funded ABA type assistance right now. As always, I will continue to pray that God will put the right people in our path to allow us to take the necessary steps to help Jack reach his full potential. He has done a remarkable job thus far. Our pediatrician, referring us at 15 months, our service coordinator, working to get us all the services we need, Rob, breaking us in to the world of Autism gently, Kristin S, a remarkable speech teacher with a heart for autistic children, Trina, an autism mom and mentor, and the many wonderful parents who have given me advice on diets, therapy, supplementation, and how to parent an autistic child.
8/24/04
Time flies, or so the saying goes. We have just returned from our first official family vacation. We went to Destin, FL with my parents and my brother to celebrate my parents’ 40th wedding anniversary. Aah, what fine examples of wedded bliss. They are quite cute to watch, most days. We packed up 1/3 of our entire house, including all food to be consumed by Jack, numerous toys, beach towels and the like, along with a stroller, pack-and-play, cd player (for nap music), booster seat, inflatable pool infant boat, etc. Good thing we only have one child! There wouldn’t have been room for a second! The condo was perfect and Jack settled right in. Mom & Dad brought along some of their toys, so Jack had a nice mix of toddler toys to occupy his “condo” time. The beach was a bit of a disaster, as Jack would not allow one single grain of sand to rest on his skin. We dressed him in socks and tennis shoes, placed him on a towel that was spread out over a bed sheet. The first few moments were mildly whimpery, until I couldn’t keep up with the sand. He’d touch the blanket, I’d wipe the sand off. Then he began to get sweaty and the sand began to stick. In two or three minutes he was in a bit of a frenzy. We lasted 10 minutes or so each day. This brought up discussions of how I, as a child, was exactly the same way. Just what you need while you are in turmoil about the emotional wellbeing of your baby! Reminiscent cajoling. Overall, Jack was a delight. He enjoyed the pool and talked up a storm! He has just started parroting – repeating most anything he hears, and some of it in full phrases! He was cracking us up with sayings like “Awesuh” (awesome), “There you go!”, “Hey Everybody” and “Tennessee”. His favorite activity was walking down to the elevator and pushing the button. Then he’d run to your leg for safety. Once inside the elevator, he’d try to push as many buttons as he could before you stopped him and then recited the floors as each one posted on the screen. Several mornings he was at the front door by 7 a.m. saying “door, open, walk!” It was adorable! Mom and Dad were absolutely smitten with him. They couldn’t stop commenting on how much improvement they saw over the last visit, 4th of July, just 7 weeks ago. They complemented his improved eye contact, joint attention with them, use of language and increased jabbering and overall increased awareness. They said the vacation was perfect. The drive home was a little rough, as we were in the car from 10a to 7 p. When we were about 15 min. from home, Jack started saying “all dee car” (all done). He was truly a trooper.
Kiley came over for a spell today to pee on our playroom floor and to play with Jack. When she arrived, she sat down next to Jack to see what he was playing with (which happened to be these new Elmo and Ernie animated babies). Jack looked over at her and touched her hair and said “oh soft!” and then went back to playing. It was so endearing. He does this to Colby when he pets him and also did it recently to my bare arm as he stroked it. My sweet little lover boy.
Tonight we ordered pizza, as I still haven’t made it to the grocery store. Pizza is Jack’s current favorite dining delight. He loves to watch “Barney’s Pajama Party”, where they sing a catchy little ditty titled “Pizza”. He sings it intermittently during the day. I might mention that since going GFCF he only eats the soy cheese off the top. No crust. Yes, I make him a special gluten free crust just to hold his precious soy cheese while it melts in the oven. Tonight he ate what was on his plate and looked at me and said “more pizza”, just as plain as day. No hesitation between words, no prompting. Progress. Delightful progress.
8/30/04
Today marks the end of an interesting era: “Mumble Man” – Jack has stopped saying any words inside his mouth. Huh? When Jack first started talking, he kept a few words tucked away: Blue, book, balloon, purple and orange. No matter how we tried, he would say these words with his lips closed. Almost amusing. Susan was also locked up in there. But over the last few days, these words have begun to pop out! First he said balloon, then purple and orange, and today, Susan AND blue!!! Hurray for Jack! So awesome!
We sure are enjoying what seems to be another big growth spurt. New phrases, more requesting (“more juice”), appropriate unprompted commenting, and the beginnings of a sense of humor! Jack may turn out to be a funny man! We are watching a little person emerge right before our eyes. We are awestruck with the splendor of it all. Saturday night we went outside to introduce Jack to sparklers. As his eyes got as big as saucers, he let out an emphatic “Cool!” that perfectly described the moment. It truly was a cool moment. Our worlds were one. And it is happening more and more. We are sharing lots of “moments” together. Last night, I got out “The Monster At The End of The Book” to read with Jack. He seemed to be intently listening as I read the words on each page in my special “Grover” voice (the same one my mom used when reading the story to me). Then he took the book from me and went through it himself. As he got to the first page he muttered his version of “what did that say?” and then giggled. Then on to the next page, “Shhhhh!” he commented, along with the text of the second page. Then on to my favorite, where Grover says in a tiny voice “Do you know that you are very strong” while buried under a pile of bricks. Jack used a high pitched voice with perfect inflection to mumble “do you know you very strong?” Then he laughed so loud! This has been going on all day, as well. He “reads” his book, sharing each page with me. I must videotape this. This is one for the record books.
Scott said to me “he’s coming out of it” tonight. Is it too early to get our hopes up? There is such obvious progress that we can’t help but be encouraged. However, I know that he still has such a long way to go. Susan fell down during therapy today and asked (begged) Jack for help. He didn’t even notice and could not be coaxed to help pull her up. Socially he will have to work very hard to maneuver in this life, I imagine. I hear myself say often that we are lucky. Funny! Who’d ever thought we’d say we are lucky, with Jack’s autism? But it seems we are. Why we got the autistic kid that responds so magnificently to therapy/intervention, I’ll never know. Perhaps it’s because we have figured out what to pray for. To ask God to put the right people in Jack’s path, to arm us with knowledge and to lead us down the right therapeutic roads. I would love for my baby to be “normal”, but can’t really wrap my brain/heart around asking God to heal him. I think he’s just fine the way he is (of course with the steady improvements). What would our lives be like if we’d never faced this challenge? How much of Jack and our lives would we have continued to take for granted? God does make all things work together for good.
The Journal Begins...thoughts from July 2004
Jack’s Journey…and my life as his mommy
6/30/04
Scattered previous entry – Overall, Jack is doing remarkably well. So much gain over the last few months. I think we have come to expect continued fantastic quick gains and really don’t want to accept stagnant periods or regressive days. I’m hard on him (in my mind) and hard on me too. Today, and yesterday, Jack’s been dealing with some kind of bug, I guess. Intermittent low fever, irritability, decreased appetite, stimming, whining instead of using words…I’m frantically trying to figure it out – teething? A bug? Yeast overgrowth? Ugh – I think I feel pressured because Mom & Dad will be here in 2 days and I SO want him to be at his best. Silly, I guess. But they see him so rarely. I just want it to be great so that they can see his progress.
Today was Rob’s last day. He’s been an integral part of this journey and Jack’s progress for the last 10 months. From a little 17 month old baby who couldn’t follow a simple direction or say a word to a sweet boy who follows simple directions, knows letters and numbers, and talks all of the time! It was hard to see Rob go – he certainly was a blessing to our family as we dealt with the overwhelming-ness of this diagnosis. So many times I cried during sessions as we talked about Jack, his future, etc. I’ll miss his guidance, but feel like I’m prepared now and armed with enough knowledge about this disorder to go forward.
7/6/04
The mystery is mostly solved. I am pretty sure Jack is getting his 2 yr. molars. Good news is that he had a good visit with Mom & Dad. Bad news is that the molars have yet to break the surface. This could be a long summer! Jack was really disconnected from Mom & Dad on Saturday, their first day here. It is heartbreaking to watch, as I’m sure it is also for them to endure. By Saturday evening he had warmed up a little more, especially with Dad at the pool, and by Sunday was doing normal grandkid stuff with them. Mom’s still thinking about him pushing her off the couch so she wouldn’t sit by him, though. When they got home they looked at their video tape and commented that his eye contact was quite poor. He really didn’t respond that well to them. Tough to hear. I love them for wanting to fight the fight with me, but the truth can be tough to hear outloud.
7/10/04
Going to attempt to begin my journal. I have a few previous entries scattered around our cluttered home, but can’t seem to get diligent enough in this effort (or many other efforts) as of late. In fact, with great intentions in hand, I spent the better part of 2 hours on the internet AGAIN. Tonight I was converting Jack’s Hair Test results to post to a bulletin board for comment. I’m so thrilled with all of his current progress. Seems that what is left after many of the other autistic-y stuff has cleared is his obvious low social skills. Eye contact and joint attention, to be most specific. So I posted to see if there was any advice for us regarding supplementation that might tackle the eye contact issue. Because sporadically it is there. We’ve seen it! For example, last night Jack played a little game with me. He was playing with his Learn Through Music Game (were back to this toy again for a jag) on the Dora cartridge. He was happily matching colored birds with their matching color nests (it is still Color Month here at the Halberts) upon request by the toy. As Scott and I sat in the playroom with Jack, he would identify one “nest” on the screen and then say the color. Then he’d look right into my eyes and say the color. I’d repeat the color and then say something like “Good job matching!”. This went on for 20 –25 exchanges! It was awesome! However, Daddy was not included in the looking game. I couldn’t believe how he was even more beautiful as I was getting that special gaze. I saw future pictures where that smiling face, staring directly into the camera, would be caught forever on film…I can dream, and hope, right?
Today we had a windfall! Scott bought 2 scratch off lottery tickets and won $100!!! And, he gave the money to me to go run “Mommy errands”. What are “Mommy errands”, you ask? Typically, they are anything you could do alone in 1/3 the time it would take to do with your two year old. Sometimes they are completely sanity saving events, like haircuts and pedicures (the pedicure part is fantasy, although I have great intentions to actually go one day) and other times they are quick errands that would completely obliterate the good mood of the best two year old, like purchasing makeup or shopping for shoes! And with $100 burning up my cool less-mommyish GAP jeans’ pocket, I headed out. First stop, decaf coffee. Afternoon and caffeinated beverages do not mix for this girl! Then off for the simple stuff. The pedicure crossed my mind several times, but then I decided I could buy 2 months of the “Brain” vitamin for Jack at the health food store. Such are the demons an autism mom wrestles with. So many expenses involved in this conquest, and we are fortunate enough to try many. But the spending nags me constantly. What will we do next year when/if Metro cuts back on funding for ABA? Metro won’t pay for his Autism-Only Speech Teacher – can we actually consider seeing her privately at $80/hr? He sees her at 2/week now! That’s $8300 per year! Yikes! Deep breathing taking place now…one day at a time. What is all of this wonderful progress worth???
This was a welling-up moment this weekend…I was tearful. Here’s why: I decided when Jack was a baby that I would sing a special song to him that would be “his” song. I considered “Baby of Mine” by Bette Midler but never bought the cd. Couldn’t find the song online to download (it was during the Napster scandal), so, while filled with emotion and pregnancy hormones and staring endlessly at this beautiful baby boy in those first days, I created my own. Quite simple, and special, and his. Well, ours. Part of that secret mom-boy wonderment that only Mommies of little boys understand. A simple, no fuss, no hair bows or wanting to wear your shoes, kind of love. Ok, so the song goes “Goodnight, Baby; Goodnight, Baby; Goodnight, Baby; Sleep tight, sleep sweet.” Trust me, it’s yummy. I sang it a lot when he was tiny. My mom said “you should videotape yourself singing it to him!” but I couldn’t bring myself to do it. Vanity, pride, embarrassment, whatever. Sang it quite a lot. Then, when Jack turned 14 – 15 mo., he didn’t want singing or reading. AT ALL. PERIOD. Was convinced that we would want him to participate, do hand gestures, point to something in the book, I don’t know. But there was no reading/singing in the rocker. So, the song went by the wayside. Now, at 2 yrs. old, a sweet boy has emerged that likes to rock. And, most recently, SING! Tonight I put him in his crib. He grabbed his blanket and pacie and said “Yight Yight…Please…Rock”. What’s a mommy to do? Of course, we rocked. Then I said, would you sing the “Goodnight” song? And he did….”guhnight, bay-beee…..guhnight, bay-beeee…..guhnight, bay-beee…guhnight, bay-beeeeeee!” Even Scott had a big impish grin on his face. Those are moments you parent for. And my plan worked…it’s OUR song, even if only for the moment. So, I taped him. And, ruled by the toddler laws he lives by, he had a rather sloppy performance on the second go round, but I heard it as though he was singing it perfectly, like the angel that he is. Sleep sweet, my angel. Mommy loves you.
7/18/04
If only I could “think” my entry into some type of mental Dictaphone and I could print it out effortlessly later…who knows, that just may be a reality in 2057 or so. Wonder if people years ago sat around wishing for something faster than a stagecoach or cooler than a ceiling fan. Probably so.
Seems that the trick to this condition, from a parent’s perspective, is riding the daily emotional rollercoaster without needing to get off or losing your lunch. Yesterday I was feeling a bit down. Noticing how little Jack actually says TO us. Also, there seems to be so much verbal stimming of the reciting of vocabulary words or counting. We’re sitting at the table, I’m asking him if he wants more of something, and he’s looking out the window saying 7,8,9,10! Those are the tough moments. Moments like this morning, watching him in Sunday School, sitting there like a big boy, getting distracted like any other two year old, but noticing the sweet little 2.5 yr. old girl next to him say “I’d better move my (stuffed) animals out of the way!” in clear as day English during the Noah’s Ark lesson while my sweet baby keeps saying “el-uh-fant” over and over while looking at the ark, almost under his breath (one that a mommy’s ear is constantly tuned in to but a sweet old teacher’s ear can’t hear amongst the crowd) as she pulls out every other animal first. Hmm, seems obvious to me why us mommies get so overprotective. A few moments with anyone else, including well meaning grandparents and daddies incorrectly interpreting his mumbles and approximations and I swear he won’t leave my sight until he’s fluent in French! Ok, so I really mean English, but it’s a fun fantasy!
But those moments are peppered with beautiful, eye-welling, heart pushing against your ribcage, L-O-V-E moments. Every parent has them, of this I’m sure. But, I suspect that only parents of Developmentally Delayed or otherwise challenged children find these moments in the simplest of places. Today I walked into Jack’s room after his nap. I had heard him on the monitor. He was definitely awake. But, unusually available right at the time of his first chatter, I went in a bit earlier than usual. He didn’t move. Eyes were open and in my general direction. I dropped some clothes in his basket and proceeded to quietly leave. No words spoken. Just a test, the results of which I couldn’t imagine. Perhaps he’d cry, scream, not notice? As I began to shut the door, the sweetest sound: “Vovvy!” he cried (his version of Mommy). The simple things. To hear your child, at two years old, speak your name, something that rarely happens in this house unprompted.
We played in his room for a while and then he headed down to the den, presumably to watch a video. Am I too easy on him, I began to think? Does he have to ask for much? Or do I just anticipate his needs? When WAS the last time he had to ask for a drink? Yes, this is why I’m exhausted each morning when I wake! The brain is constantly torturing me like this! So, I sat down on the stairs leading to the den. He happily hopped up on the couch, faced the tv and said “Vatch!” Then he waited. I moved a bit farther down the stairs, so I’d be in view, and turned my head away. No eye contact. And, beautifully, he ran over, made quick eye contact and said “Vatch!” and ran back over to the couch. Test completed. You have passed. My worries subside for a little while.
Baby feelings are ever so slightly creeping in. Not even baby feelings, per se, but “family” feelings. I want to have a family. I KNOW that I already have a family, but I want a bigger family. While I don’t see us agreeing to a third without the assistance of some failed birth control or an empty bottle of wine, the possibility, especially prior to the diagnosis, was more like probability for a second. A sibling for our sweet baby boy. He, the big brother, little brother or bothersome sister in tow. But, odd as it sounds, we feel so blessed by Jack’s condition. He is doing so well, is such a sweet and loving child, that we have good reason to believe that we will be able to “recover” him (and I use that term loosely). I guess I mean that I feel today that he will be able to lead an independent life. Perhaps he will look forward to an education without an aide. He’ll be able to communicate with us and those around him. But the fear of the unknown is a mighty tool of the devil. What if the next child is again afflicted? What if the condition is more severe? How would we live with our decision to increase our family? I try not to think of these things too much. And I want to know Scott’s opinion in all of this, because one yes equals a “no” on this issue. So, tonight I gently slid the question out in the open. Almost underhanded, which is only my style in the stickiest of situations. “I don’t want Jack to be our only child, do you?” I timidly stated. I got the ever so classic Scott response, the “shrug”, followed by an “I don’t know”. The door is cracked open just a fraction, ladies and gentlemen, and light is coming through. This topic is tabled for a month much colder than this one.
I have neglected my crafty-motherly duties for months. I haven’t touched Jack’s scrapbook. I now have 3 stuffed storage boxes brimming with photos of every awesome and ordinary moment of his 2.25 years. And, to date, I have about 9 scrapbook layouts completed to prove what a wonderful life it has been. First I was busy, working part time at my quasi-career as a Pampered Chef Director while caring for a new little tyke, then it was the onset of therapy last summer, along with the part time work and wifely responsibilities. Then, it was grief. As his diagnosis became a looming, speeding freight train headed directly for us in the dead of night, I wasn’t sure HOW to scrapbook and journal what we were experiencing. And, honestly, I still don’t. Do I take photos of his sweet team of therapists, giving their time and talents to a little boy that barely acknowledges their existence, and include progress reports, or do I gloss over this grueling time in our lives in hopes of “not dwelling on the dark years” when we make it to the “other” side of this nightmare, God willing? Do I comment on the fact that I have quite an extensive collection of “candids”, since my sweet boy will not smile at the camera? If at the end of the journey, I have a perfectly healthy, world dictated “normal” little 7 year old in regular school, no longer meeting the criteria for Autism, will we tell it like it is or spare him the gory details? My guess, knowing me, is that it will just be part of his existence, like adoption is for me, or Scott’s father’s death is for him. Life is not without bumps (or chasms) in the road.
7/25/04
Dawn of a Breakthrough? Yesterday was an ordinary Saturday here. After running a few errands alone in the a.m. while Jack was in therapy, we settled into our Saturday routine. I fixed lunch for Jack and me (Daddy always manages to eat breakfast around 10, lunch around 3 and then joins us for dinner) and then we played together while Scott began his yard duties under a bright summer sun. I noticed something that humored me…Jack didn’t want me to leave the room. He received a new Learn Through Music game cartridge this week, and I think he’s unsure of some of the sounds it makes (like a rocket ship blasting off). So, he’d come and find me and say “Help”. I’d come into the playroom and he’d sit down with the game. If I left the room, he would fuss and cry “help”. How nice to be wanted! Then, while playing, he would be sure that we were touching. At one point, he was laying on me, playing from my lap. An autistic mother’s dream! Later, I set up the pool on the deck and filled it with water. Jack played in and around the pool while I sat on a patio chair and read a book. Ok, I didn’t get much reading done, but my intentions were there! Instead, I responded to Jack, who constantly was making comments to me. He’d pick up a bathtub letter and look at me and say “B”, followed by “hurray!”. He’d wait for me to say “hurray” too. What a fun game. Lots of eye contact out there on the deck. You’d have thought we were just ordinary folks enjoying an ordinary Saturday. It was anything BUT! My baby was looking at me…lots!!! I put him down for his nap and noticed that he was as quiet as a churchmouse. Asleep in 5-10 minutes, I suspect. We’ve grown so accustomed to hearing him chatter on and on, oftentimes for 30 minutes or more! Scott and I both commented on how engaged he was all day and how much he seemed to care whether or not we were in his environment.
Friday night, while playing on the computer, I counted 16 eye connections with me in 15 minutes! Wow! Then yesterday, while watching “Do the Alphabet” DVD, a record setting 26 times in 15 minutes!!! If he keeps this up I’m going to start to expect it!
Then today we head to church. Jack walks into his class and shouts “Hi!” before his teachers could even acknowledge his presence! This is new…then on to the worship service. He was quite chatty in the service, as usual, but sat quite well for being just 2 and a quarter years old! (I keep reminding myself of this fact). With 15 minutes left in the service, he looks to his left and sees “Mr. John” seated next to me. He climbs over me and right into John’s arms. John cuddled him for 4 or 5 minutes. Jack looked like he just wanted John to hug on him for a bit. This is the most outward sign of affection I’ve ever seen Jack display to someone other than Scott or me. You could tell that John was smitten. Jack even gave him a kiss before squirming back to his seat. I was proud. The little things…
For the record, I have started this week Houston’s AFP-Peptizide enzyme in place of the Kirkman Complete DPPIV and am up to 1 capsule at each meal. No problems, that we’ve noticed. Additionally, Thursday I started adding 25 mg. DMAE into his a.m. cocktail. This would be in addition to the 20 mg. he is receiving of DMAE in his vitamin, which he takes most days. Could one or the other be contributing to the joint attention and/or eye contact increase? Time will tell.
7/26/04
One step forward, two steps back…that seems to be the saying and today it seems to hold true. I’ve noticed Jack’s “scripting” seems to be hitting an all time high. I first noticed it enough to mention it to Jack’s speech therapist on Thursday. I hear him in the morning counting, saying his ABC’s and a bunch of inflected jargon that I’m betting is his repertoire of video/computer game dialogue. If only he spoke clearly, I think he’d confirm my fears. Today, however, it was crazy! After his 1.25 hr “power” nap, I put him in the swing as we waited for his third ABA session of the day. He got on a counting jag that was of epic proportions. Lisa came in during his 10th round (or so) of 1 – 10 and raised her eyebrows. Her face said “uh oh”, but she said nothing. Then, after his session was over, as we went to the door to say our mandatory “goodbye”, he started counting again. I actually could NOT interrupt his counting to get him to successfully say goodbye! It was freakish. I was very disturbed. It was like he was possessed or wasn’t there. And, to top it off, we had to go immediately to the paint store before it closed, so I got his shoes and hurried him to the car. All the way into the garage and car, the counting continued. I tried screaming into his ear. It did not phase him. By the time we were heading home from the paint store (where he did not count, but instead looked around and picked out colors to recite) my eyes had welled up with tears. I was near a breaking point. It was now 6 p and dinner wasn’t even started. The house is in shambles from the painting (which I secretly hope is the culprit of today’s craziness – paint fumes!) and I have PMS (legitimately) to top it all off. My stomach is now churning. Ugh. Luckily, these days are few and far between. Good thing, or I’d be filling out my own application to Bellevue! So, here’s the fun game I get to play tonight: What is causing the Scripting? Answers: a) increase of DMAE b) switch to HNI’s AFP-Peptizide from Kirkman’s DPPIV c) paint fumes d) changeover from Epsom Salt Baths to less frequent use of Cream e) absolutely nothing that we’ve done. And I wonder why I have dreams where Jack’s pediatrician has a meeting with me where he tells me I am an OVERINVOLVED mother and I have problems! Then we chase his moving car down the street that contains his children and mine and no driver!
7/28/04
Officially – a really GOOD day! I did a lot of praying last night. I’m asking for peace; turning over the tough stuff for God to handle, since he’s much better at it anyway. Got up feeling pretty good. Kitchen is freshly painted and the granny wallpaper is gone! Jack ate left over French toast sticks without a fuss for breakfast. Weather was just gorgeous – 68 degrees this morning (in July)! Jack had therapy and I buzzed around the house, cleaning up after the painter. Then we hopped in the car and drove over to the grocery for some quick shopping. Got home and set up for lunch for Jack & me on the porch! Put kid music on out there, set up the booster seat, and we had a lunch “date”. Things went so well that I got out the camera and, lo and behold, got 4 outstanding photos of Jack, looking straight at the camera! How absolutely fantastic! That alone would have made for a good day.Also, his scripting seems to be lessening. Perhaps it was the DMAE, which I have removed, or his initial reaction to the new enzyme is balancing out. Whatever the reason, it seems a little better. Then this evening we all went out to eat with Scott’s new boss and had a great time. Jack was a doll baby. I told him we’d have Chicken & Fries at the restaurant (which I had to bake and bring warmed due to the diet), and when we sat down I gave him some fruit. He said, “chicken, fries”. Funny. After he was finished eating, he played with his sticker book, placing about 5 stickers down the length of one arm. Once we got home, however, he seemed to be in some sort of pain – when he went potty he whimpered, then screamed a little afterward, even as I was changing him, as though his bottom hurt. This seemed to subside until bedtime, when he got real whimpery again. I put him to bed and went downstairs. A few minutes later he was screaming, so I went in and rocked him for a while. Then I put him back in the crib and left. 5 minutes later he is screaming (quietly) again, then stops, then says very clearly “Vovvy!” (his version of Mommy). He said it twice! I bolted up the stairs and “rescued” him from the night monsters and rocked him until I could hear his heavy patterned breathing and watch the rise and fall of his little chest. I tucked him delicately into his crib and tiptoed out, with a grin as big as Texas. My baby called for me today. July 28. A really GOOD day.
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