525,600 minutes. . . 525,000 moments so dear. 525,600 minutes. How do you measure a year?
Those are words from one of my all time favorite songs, Seasons of Love from the wonderful musical Rent. How do YOU measure a year?
I have asked myself this question a lot the last few days as exactly one year ago today, Charlie was officially diagnosed with autism. It's been a bittersweet kind of day as I have reflected on his progress as well as his setbacks. I'm not sure where I thought we would be a year into this journey. Of course, a parent always hopes for optimal outcomes as quickly as possible. But, that is not the name of this game. Still, it is HARD to be patient. I have learned to be happy with even small break throughs. . . actually, they don't seem so small to me.
People often ask me about Charlie's progress. It's hard sometimes for me to explain it, especially to those who are not familiar with autism. Some things may seem so trivial to them, and I sometimes get the blank look in response when I explain that overall he is just "more aware" or his "receptive skills" are very good. Or even when I get so excited when he REALLY hugs me back or uses even one word in an appropriate way. Even Adam often comments that he doesn't see progress. . . I think, though, that he is just hoping to wake up one morning and see big changes, and, in all likelihood, that just ain't gonna happen. Slow and steady . . . it's a hard lesson when you have a child with autism. You find yourself obsessing about the future. . . and getting all stressed out in the process.
Will he ever ask me a question?
Will he ever be able to have a conversation with me?
Will he have friends?
Will he be mainstreamed in school?
Will he be able to live independently?
Will he ever fall in love?
Will anyone ever fall in love with him?
WILL HE BE HAPPY?????
In the end, that's all I want as a parent. I want my child to be happy. I see now that we will likely take a different route to get there, but whatever it takes. Overall, I think we handle the day to day challenges of autism very well. Not to say we don't get down, because we most definitely do. Some days, when the behavior is off the charts (as we have had recently with a phase of aggressive behaviors such as pinching, scratching and pulling hair), I just want to sit in a corner and give up. But, thankfully, those days are few, and when one of us is having a weak moment, the other one steps in and takes care of things.
But, I also admit to moments of terror on my part. Moments that, in the midst of going about my daily business, kick me in the stomach and take my breath away. Seemingly out of nowhere. Those same questions above. And others. Will other kids make fun of him? Will he know they are making fun of him? Will he ever have a girlfriend, assuming he ever wants one? Will he ever know how to play with other children? Or, for that matter, will he ever really know how to play with a toy in an appropriate way ever again? Will he ever get his attention span back again? WILL HE BE HAPPY?? Thoughts like this have even woken me up at night from deep sleep. I run in and look at Charlie while he sleeps, and it makes me feel better.
And, I admit to other, more selfish questions. . . Like. . Will he ever be able to eat food without making a HUGE mess? Will he ever stop throwing the couch cushions all over the floor all day long? (He likes to get under the cushions, probably for the sensation of having them against him.) Will he ever stop mouthing things all the time? Will I ever NOT feel totally exhausted? Will I ever feel totally comfortable at someone else's house instead of feeling like I need to be on top of him all of the time? Will I ever not leave a birthday party or other gathering of his "typical" peers and not feel a little depressed? Where the hell did all of his language GO?? What the heck happened to his attention span? How did I get here?? :)
It's been an up and down ride this year. Sometimes it's hard for me to share these personal thoughts, but this is what it means to have a child with autism. These are our daily concerns. . . But if you look closely, they're not all that different from a parent of a "typically developing" child. . . albeit a little more extreme on our end.
But the positives far outweigh the negatives. We have seen some great things from Charlie over this last year. He is slowly gaining back the language that he lost, and more and more using it in an appropriate context. He seems to have a general understanding of some social situations. For example, this evening he pinched Addison a little too hard which was not intentional on his part. She cried, and I fussed at him. He saw Addison crying and looked really concerned. He started crying, too and appeard to feel bad for making his sister upset. He definitely understands language better than he used to, and will even listen to you from across the room or from upstairs. (Big development considering how "spaced out" he once was, requiring you to call his name over and over and usually get up in his face to get his attention.) He now sits at circle time, hangs up his own back pack, unzips his own lunch box, helps put on his own pants and shirt (and, can almost do this by himself), and is making great strides in the potty department. We still have lots of work to do in many areas. It's not going to be easy, especially when faced with Charlie's sensory issues and extremely short attention span, but we're learning every day to be patient while pushing him to do his best.
This has been a hard year. It's still hard for me to believe that it's only been one year. With all of the changes and everything we have learned, it is almost mind boggling that it has all occurred within the span of one year. But, even though it's been rough, I still wouldn't classify it as bad. We're on this path, whether we chose it or not. So, we have to make the most of it. One positive of autism -- it truly makes you appreciate the little things. When Charlie says "mommy" clearly, it makes my eyes a little misty. When he has a good potty day, I am in a good mood. When he runs to me and hugs me, it makes my heart swell so much it feels like it will burst. We NEVER take these things for granted anymore. It is all so precious.
So, how would I measure this first year on our autism journey? In resilience? Lord knows it has taken oodles of that to make it through. . . In patience. . . we've needed an endless supply of that and will continue to do so. I'm tempted to measure it in hope, as we are certainly hopeful every day. We can never let go of hope without giving up on our son.
While all of these would be appropriate measures for this year, I think I will follow the lead of my favorite song and measure in LOVE. In this regard, this year could only measure as boundless.
Tuesday, May 4, 2010
Sunday, March 21, 2010
1st Round of HBOT down. . .
Whew. We have been a busy crew over the last 40 or so days. As my previous post indicated, Charlie started HBOT on February 1. What an interesting experiment it has been. Of course, because he is so young, either Adam or myself had to do every "dive" with him. Since Adam is working and traveling during the week, I did the week day dives, and Adam covered the weekend shifts. We tried our best to do 40 days in a row, but did have a few missed days due to illness, weather, etc. Over all though, we stayed on target very well I think.
The first few dives were interesting for me. As you can imagine, being in a small, confined space with a very hyper 3 year old can make for challenging times. There weren't a whole lot of things for Charlie to play with in there, so he took to "playing" with mommy. I got poked, scratched, pinched, kicked, rolled on, kneed in every possible part of my body. Needless to say, it was no fun for me the first couple of times. . . except for the rare moments when Charlie would calm down and let me cuddle with him.
But, after a few dives, Charlie got the hang of it and even started sleeping through most of them. I must admit, part of me looked forward to our daily HBOT dive, because, if Charlie was asleep, it meant some assured down time for me to either just veg, or, usually, to read. Like most busy moms, I don't really do down time. However, when you are laying in an HBOT chamber with a sleeping 3 year old, you have no other choice.
Near the end of our 40 sessions, I took Addison in with us when I had no one to watch her. That is an exercise in patience if I have ever had one. She was ALL over the place. . . and ALL OVER ME. After about 10 minutes she was asking to get out and then crying because I told her we could not get out. She did get better, but I earned my mommy salary that day. She will be going back in with us for the second rounds. . . I am feverishly searching for our portable DVD player so as to have something to distract my busy little 2 year old.
So, on to the most important part of this post. . . what changes have we seen since Round 1 of HBOT??? Well, I think, quite a few. Most notably, we have seen a nice increase in language. And, more importantly, appropriate use of this language. Sure, we still have lots of random repeating and words out of context, but increasingly more appropriate use of words. For example, and perhaps my favorite, Charlie has been using "oh shit." Okay, oops. . . that is my fault. BUT. . . he uses it appropriately. One day, he dropped some grapes in class and said "oh shit." As his teacher said, he certainly won't be getting into any trouble for using appropriate language. . . no matter what that word may be. That same day he also stole another student's shoe and made the little boy cry. Charlie started crying, too and said "I'm so sorry." He has also manded (or requested) lots of items, particularly food items, such as "waffle," "chip," "baked beans," "melon," "juice," and "water." His echo has gotten stronger and he will repeat more things he has heard right after he hears them. On another occassion, he told the secretary at the school's front office "good morning" right after she said it to him. In addition, he mands with signs more frequently. He most often signs for straw, chip or sandwich. This is the first time I've really seen him sign without having to be prompted for it first. What I consider to be a HUGE development for us, Charlie has answered a few questions with "yes" or "no." This is a very big deal, because it is the first step to conversation. He acknowledged he was being asked a question, and answered it. This is not an easy concept for lots of people with autism. (Come to find out, he has also answered "yes" in class -- when they asked him if he wanted to wear his squeezy vest).
I was very excited a couple of weeks ago when we went to the park one day after school. It was a beautiful day, and I had a major case of Spring fever. At first, Charlie was quite upset. I'm not sure why except that I knew he was very tired. I think he may have also been confused about why we were at the park and not at HBOT since this had become the routine. He calmed immediately, though, as we started walking. We made our way to the playground, and as I pulled the stroller up to the play area, Charlie started wiggling and trying to get out of his seat (he was strapped in) saying "go slide, go slide!" Let me tell you, I could not get him out of that seat fast enough so he could "go slide!" Then, while at the swings, he heard one child tell his father "go faster" and he turned and immediately repeated the phrase to me. I was pushing him as fast and as hard as I could to oblige him and encourage the use of language. It was a good day, even if Charlie was quite agitated . . .the park was very crowded and a little overwhelming for him that day.
He also just seems to be more aware and in tune. He listens fabulously to instructions and seems to understand everything that is said to him. On at least two occasions when I asked for a hug/kiss, he put his lips out to mine and threw his arms around me, as opposed to the ol' lean in of the body to let ME hug him. (And, believe it or not, the pucker manuever to kiss someone is quite hard for many autistic children). When he did that, my heart felt like it would leap right out of my chest.
We have seen some other changes, too. Some not quite as good. Mostly, increased hyperness and stimming. We were told to expect this, and everything I read also indicated this was a possibility through the first few dives. The first couple of weeks, Charlie was spinning A LOT. And we definitely saw increased laughing spells, night waking and "jibber jabber" (the constant background talking Charlie can do at times). This did get better over the course of 40 dives, but it did remain an issue, especially the sleep, or lack thereof. Charlie has taken to getting up at 4:00 a.m. at least 2 or 3 times a week.
I also feel like we saw increased moodiness and fussiness. I'm not quite sure what is going on here or how much it may or may not be related to HBOT. Or, is it just that Charlie is becoming more aware of his surroundings and realizing how hard it is for him to communicate?? His teacher thinks it may just be a natural progression and not necessarily a bad thing, and, in fact, a good thing. That may be, but it ain't easy to deal with. He gets frustrated more easily now, and seems to be more vocal about it. In fact, one night he downright scared me. It was bed time, and, as usual, I was having a hard time keeping Charlie in bed. He came out of his room, and I caught him trying to climb up in our bed. I sternly told him "no" and he screamed/growled very loudly while running at me. Louder and more intense than I had ever heard him do before. He ran to me, but immediately put his arms up so that I would pick him up and comfort him, which, of course, I did. He was absolutely trembling like he was scared to death. I'd never seen anyting like this before with him. I walked him back into his room and talked to him. He seemed to be freaked out by his aquarium night light so I turned it off. The trembling subsided and he went to sleep. I, on the other hand, was freaked out for the rest of the night and could barely sleep at all.
The next night, I could not get the child to go to sleep for the intensity of his giggling fits. He sat in his room and laughed non-stop and, for the most part, uncontrollably for over an hour and a half. I have seen and heard many giggling fits over the last year or so, but this one was different. I went in to tell him to quiet down, and I couldn't get any words out over the loud giggling. It may sound like it was cute and funny. . . but it was anything but. It was downright freaky, to be honest. I still have no idea what that is about.
Just over a week ago, I received a call from Charlie's teacher one Friday morning. She asked if Charlie had a history of panic attacks. My immediate response was "NO. WHY???" She told me that he had been at the table eating snack. He was very happy, eating a yummy snack and holding a straw (which, for those of you that know Charlie, you know how much he loves straws). Out of nowhere he started pouring sweat and got very red in the face. She said it sounded like he was hyperventilating, and she actually got nervous that he was choking. He started to scream loudly over and over. She said it sounded like he was in pain or being tortured. Other teachers came in and saw what was going on. None had ever seen anything like it. . . and this is a school and group of teachers that are experienced with autism and have seen many seizures and strange behaviors. Once the screaming stopped, he was dazed and confused, like he didn't know where he was for a while. When he "came to," he started saying "daddy, daddy." He had 2 other minor spells where he seemed to get agitated again. I was freaked out about this, but, I admit, at first I thought it was just another tantrum of some sort. Until I called the doctor.
The doctor started asking me all of these specific questions and, after I told him everything I knew, he said it sounded very suspicous of a seizure. I went online and, unbeknownst to me, it's not uncommon for people to scream bloody murder when they are having a seizure or, for that matter, giggle uncontrollably.
Naturally, my mommy brain just started spinning out of control at this point, now feeling assured that my child had at least one seizure. (I don't think the giggling incident was a seizure because of the long duration and, more imporantly, because he was totally aware and did everything I asked him to do during it. He just laughed the whole time. Nevertheless, it will be discussed with the neurologist.)
I asked the doctor if HBOT could be the cause of the seizure. I had read that HBOT may not be recommended for children who have seizures because it may increase the frequency of the seizures. The doctor said he had never heard of mild HBOT (which is what we are doing) contributing to seizures in any way, and he does not think it is related. He did, however, think it was possible that our evil nemesis, gluten, may have been the culprit. (Not a certainty, but he said he has seen gluten cause seizures.) Charlie had gotten hold of gluten (a roll and a cupcake) the previous Saturday at a party. I swear, the child can sniff it out from across the room and makes a beeline for it. I was planning on doing another gluten challenge next month, but I decided we'd just try it early since Charlie had helped himself. So, that entire week he got gluten filled products -- regular pizza, regular chicken nuggets, etc. And, in fact, we did see strange behaviors all week. I admit, I still have a hard time wrapping my head around the notion that gluten could cause all of this, the increased tantrums, giggling, seizures, etc, but ya just never know. Needless to say, gluten has been removed once again.
I called around frantically on Monday to make an appointment with a neurologist for an examination after Charlie's seizure. (This was after a weekend where Charlie slept every night in our bed because I was too afraid to leave him alone all night.) The first available appointment I could get was October 1!!! Yikes. . So it is with the unbelievable rise in autism that the pediatric neuros here are booked out for MONTHS. I did talk to the nurse. She made me feel much better. She told me it is not uncommon for children to have one seizure and then never have another. If he were, by chance, to have another, we were to go straight to the ER and the doc on call would see us right away. She said one seizure does not raise a red flag for the doctor, but two, and they start wondering what is going on. We spoke a little more, and she sent me some paperwork to have Charlie re-evaluated for ADHD. She also said I would be placed on the waiting list and would likely get in much sooner than October. Let's hope.
So, all in all, it's been an extremely busy time for us. Between taking Charlie to school, OT and HBOT, (and my very meagre work schedule) I practically live in my car. But, I am not complaining because I feel like we are doing the right things for our little man.
Our second round of HBOT starts this Tuesday. Once again, we are going to make every effort to go 40 days in a row (or as close to that as we possibly can). I am so proud of the things Charlie has accomplished in this short span of time. I look forward the endless possibilities.
The first few dives were interesting for me. As you can imagine, being in a small, confined space with a very hyper 3 year old can make for challenging times. There weren't a whole lot of things for Charlie to play with in there, so he took to "playing" with mommy. I got poked, scratched, pinched, kicked, rolled on, kneed in every possible part of my body. Needless to say, it was no fun for me the first couple of times. . . except for the rare moments when Charlie would calm down and let me cuddle with him.
But, after a few dives, Charlie got the hang of it and even started sleeping through most of them. I must admit, part of me looked forward to our daily HBOT dive, because, if Charlie was asleep, it meant some assured down time for me to either just veg, or, usually, to read. Like most busy moms, I don't really do down time. However, when you are laying in an HBOT chamber with a sleeping 3 year old, you have no other choice.
Near the end of our 40 sessions, I took Addison in with us when I had no one to watch her. That is an exercise in patience if I have ever had one. She was ALL over the place. . . and ALL OVER ME. After about 10 minutes she was asking to get out and then crying because I told her we could not get out. She did get better, but I earned my mommy salary that day. She will be going back in with us for the second rounds. . . I am feverishly searching for our portable DVD player so as to have something to distract my busy little 2 year old.
So, on to the most important part of this post. . . what changes have we seen since Round 1 of HBOT??? Well, I think, quite a few. Most notably, we have seen a nice increase in language. And, more importantly, appropriate use of this language. Sure, we still have lots of random repeating and words out of context, but increasingly more appropriate use of words. For example, and perhaps my favorite, Charlie has been using "oh shit." Okay, oops. . . that is my fault. BUT. . . he uses it appropriately. One day, he dropped some grapes in class and said "oh shit." As his teacher said, he certainly won't be getting into any trouble for using appropriate language. . . no matter what that word may be. That same day he also stole another student's shoe and made the little boy cry. Charlie started crying, too and said "I'm so sorry." He has also manded (or requested) lots of items, particularly food items, such as "waffle," "chip," "baked beans," "melon," "juice," and "water." His echo has gotten stronger and he will repeat more things he has heard right after he hears them. On another occassion, he told the secretary at the school's front office "good morning" right after she said it to him. In addition, he mands with signs more frequently. He most often signs for straw, chip or sandwich. This is the first time I've really seen him sign without having to be prompted for it first. What I consider to be a HUGE development for us, Charlie has answered a few questions with "yes" or "no." This is a very big deal, because it is the first step to conversation. He acknowledged he was being asked a question, and answered it. This is not an easy concept for lots of people with autism. (Come to find out, he has also answered "yes" in class -- when they asked him if he wanted to wear his squeezy vest).
I was very excited a couple of weeks ago when we went to the park one day after school. It was a beautiful day, and I had a major case of Spring fever. At first, Charlie was quite upset. I'm not sure why except that I knew he was very tired. I think he may have also been confused about why we were at the park and not at HBOT since this had become the routine. He calmed immediately, though, as we started walking. We made our way to the playground, and as I pulled the stroller up to the play area, Charlie started wiggling and trying to get out of his seat (he was strapped in) saying "go slide, go slide!" Let me tell you, I could not get him out of that seat fast enough so he could "go slide!" Then, while at the swings, he heard one child tell his father "go faster" and he turned and immediately repeated the phrase to me. I was pushing him as fast and as hard as I could to oblige him and encourage the use of language. It was a good day, even if Charlie was quite agitated . . .the park was very crowded and a little overwhelming for him that day.
He also just seems to be more aware and in tune. He listens fabulously to instructions and seems to understand everything that is said to him. On at least two occasions when I asked for a hug/kiss, he put his lips out to mine and threw his arms around me, as opposed to the ol' lean in of the body to let ME hug him. (And, believe it or not, the pucker manuever to kiss someone is quite hard for many autistic children). When he did that, my heart felt like it would leap right out of my chest.
We have seen some other changes, too. Some not quite as good. Mostly, increased hyperness and stimming. We were told to expect this, and everything I read also indicated this was a possibility through the first few dives. The first couple of weeks, Charlie was spinning A LOT. And we definitely saw increased laughing spells, night waking and "jibber jabber" (the constant background talking Charlie can do at times). This did get better over the course of 40 dives, but it did remain an issue, especially the sleep, or lack thereof. Charlie has taken to getting up at 4:00 a.m. at least 2 or 3 times a week.
I also feel like we saw increased moodiness and fussiness. I'm not quite sure what is going on here or how much it may or may not be related to HBOT. Or, is it just that Charlie is becoming more aware of his surroundings and realizing how hard it is for him to communicate?? His teacher thinks it may just be a natural progression and not necessarily a bad thing, and, in fact, a good thing. That may be, but it ain't easy to deal with. He gets frustrated more easily now, and seems to be more vocal about it. In fact, one night he downright scared me. It was bed time, and, as usual, I was having a hard time keeping Charlie in bed. He came out of his room, and I caught him trying to climb up in our bed. I sternly told him "no" and he screamed/growled very loudly while running at me. Louder and more intense than I had ever heard him do before. He ran to me, but immediately put his arms up so that I would pick him up and comfort him, which, of course, I did. He was absolutely trembling like he was scared to death. I'd never seen anyting like this before with him. I walked him back into his room and talked to him. He seemed to be freaked out by his aquarium night light so I turned it off. The trembling subsided and he went to sleep. I, on the other hand, was freaked out for the rest of the night and could barely sleep at all.
The next night, I could not get the child to go to sleep for the intensity of his giggling fits. He sat in his room and laughed non-stop and, for the most part, uncontrollably for over an hour and a half. I have seen and heard many giggling fits over the last year or so, but this one was different. I went in to tell him to quiet down, and I couldn't get any words out over the loud giggling. It may sound like it was cute and funny. . . but it was anything but. It was downright freaky, to be honest. I still have no idea what that is about.
Just over a week ago, I received a call from Charlie's teacher one Friday morning. She asked if Charlie had a history of panic attacks. My immediate response was "NO. WHY???" She told me that he had been at the table eating snack. He was very happy, eating a yummy snack and holding a straw (which, for those of you that know Charlie, you know how much he loves straws). Out of nowhere he started pouring sweat and got very red in the face. She said it sounded like he was hyperventilating, and she actually got nervous that he was choking. He started to scream loudly over and over. She said it sounded like he was in pain or being tortured. Other teachers came in and saw what was going on. None had ever seen anything like it. . . and this is a school and group of teachers that are experienced with autism and have seen many seizures and strange behaviors. Once the screaming stopped, he was dazed and confused, like he didn't know where he was for a while. When he "came to," he started saying "daddy, daddy." He had 2 other minor spells where he seemed to get agitated again. I was freaked out about this, but, I admit, at first I thought it was just another tantrum of some sort. Until I called the doctor.
The doctor started asking me all of these specific questions and, after I told him everything I knew, he said it sounded very suspicous of a seizure. I went online and, unbeknownst to me, it's not uncommon for people to scream bloody murder when they are having a seizure or, for that matter, giggle uncontrollably.
Naturally, my mommy brain just started spinning out of control at this point, now feeling assured that my child had at least one seizure. (I don't think the giggling incident was a seizure because of the long duration and, more imporantly, because he was totally aware and did everything I asked him to do during it. He just laughed the whole time. Nevertheless, it will be discussed with the neurologist.)
I asked the doctor if HBOT could be the cause of the seizure. I had read that HBOT may not be recommended for children who have seizures because it may increase the frequency of the seizures. The doctor said he had never heard of mild HBOT (which is what we are doing) contributing to seizures in any way, and he does not think it is related. He did, however, think it was possible that our evil nemesis, gluten, may have been the culprit. (Not a certainty, but he said he has seen gluten cause seizures.) Charlie had gotten hold of gluten (a roll and a cupcake) the previous Saturday at a party. I swear, the child can sniff it out from across the room and makes a beeline for it. I was planning on doing another gluten challenge next month, but I decided we'd just try it early since Charlie had helped himself. So, that entire week he got gluten filled products -- regular pizza, regular chicken nuggets, etc. And, in fact, we did see strange behaviors all week. I admit, I still have a hard time wrapping my head around the notion that gluten could cause all of this, the increased tantrums, giggling, seizures, etc, but ya just never know. Needless to say, gluten has been removed once again.
I called around frantically on Monday to make an appointment with a neurologist for an examination after Charlie's seizure. (This was after a weekend where Charlie slept every night in our bed because I was too afraid to leave him alone all night.) The first available appointment I could get was October 1!!! Yikes. . So it is with the unbelievable rise in autism that the pediatric neuros here are booked out for MONTHS. I did talk to the nurse. She made me feel much better. She told me it is not uncommon for children to have one seizure and then never have another. If he were, by chance, to have another, we were to go straight to the ER and the doc on call would see us right away. She said one seizure does not raise a red flag for the doctor, but two, and they start wondering what is going on. We spoke a little more, and she sent me some paperwork to have Charlie re-evaluated for ADHD. She also said I would be placed on the waiting list and would likely get in much sooner than October. Let's hope.
So, all in all, it's been an extremely busy time for us. Between taking Charlie to school, OT and HBOT, (and my very meagre work schedule) I practically live in my car. But, I am not complaining because I feel like we are doing the right things for our little man.
Our second round of HBOT starts this Tuesday. Once again, we are going to make every effort to go 40 days in a row (or as close to that as we possibly can). I am so proud of the things Charlie has accomplished in this short span of time. I look forward the endless possibilities.
Sunday, January 31, 2010
Winter Update
Hello from our mini Winter wonderland here in Waxhaw, NC! We got a piece of a winter storm that passed through this weekend. Not much snow to speak of, but we did have some sleet and freezing rain. It was just enough to cover the ground so that the neighborhood kids could go sledding on the little hill across the street from our house. Adam and Charlie went sledding yesterday for a bit.
We've had a busy 3 months since my last post. We had a fabulous Christmas this year, celebrating with Adam's family in Ft. Wayne, IN. We finally got to see Che Jacobs (aka the new house on Big Long Lake). It is just beautiful, and we really did not want to leave. :) Charlie and Addison just love spending time with their big cousins George, Alice and Sophia. Charlie, in particular, has always taken a liking to George. Addison was quite smitten with Alice who just showered her with attention. (A sure way to win over Addison's attention seeking heart.)
Over all, Charlie did seem to be excited about Christmas although he never spoke about it (beyond a few attempts at singing what sounded like Christmas carols). He did a great job at sitting through church on Christmas Eve and enjoyed a few of his presents, including an array of sensory balls and a slinky. However, he was not a fan of opening presents. In fact, it seemed to almost upset him or make him nervous at first. He got more used to it, but never got into the act of ripping open wrapping paper. Guess it just makes life easier for me for future gift giving occasions if I don't have to wrap. :) Addison was more than happy to open presents her big brother did not care to open himself, as you can imagine.
Charlie has continued to do well at his (not so) new school. He is now sitting through circle time all on his own. In the past, he had to be repeatedly prompted and reinforced to sit through circle time. Now, he has learned that this behavior is expected and does so all on his own. That's a big development for us! He has even clapped along with music all on his own as well. Another big and exciting development for us. To me, this shows he is more aware of his surroundings and what is expected of him in a school environment. He's doing really well, and I am very proud of him.
Charlie's tummy issues are much better now. For the first time in a long time, we are seeing some solid BMs. After the last OAT test, we were delighted to see that Charlie's clostridia levels were in the normal range. We are still working on potty training. He will pee in the potty, but no poop yet. And, to be frank, he will just as readily pee in his pull up as the potty. So, we have to try to stay on top of him and put him on the potty regularly if we want to go an extended period of time with a dry pull-up. I have been reading a little about potty training a child with autism. I'd like to work on this over the summer when Charlie will be home with me a little more. It is not going to be an easy task.
In the last month, we have added some homeopathic remedies into our treatment protocol. I met a wonderful doctor of natural medicine through a local on-line autism web group. She contacted me for some legal advice. At the same time, I was reading up on homeopathic and natural remedies so I was very interested in her practice. She recommended some new supplements for us. We started 3 new ones -- GabaFlo, AcetylFlo and NeuroTrans Active. All of these are sprays which we spray in Charlie's mouth 2-3 times a day. We have seen some changes since we started these supplements, most notably an increase in language. Granted it is mostly echolalia, but I'll take any increase at this point. His teachers at school even commented that he was more talkative than he had been. (Apparently he recited a line one of his teacher's likes to use quite often: "That's the bottom line." Around our house, he repeats "That's enough" and "Knock it off" which are two things I say daily around here.) He has also spontaneously requested things like "water" and "chip." A couple of times it really sounded like he said "thank you" when I handed him something to eat or drink. His pronounciation is not always clear so sometimes it is kind of hard to tell. But, it gets a little clearer every day. However, we have also seen some increased stimming, mostly spinning. This isn't too surprising as any new supplement can cause increased stimming or other behaviors until you get used to them. So, for now, we will just keep our eye on the frequency of the stims.
We are also extremely excited to be starting HBOT tomorrow!!! We have wanted to try HBOT for some time now. When Charlie was first diagnosed, we took him to see a neurologist on the advice of the developmental pediatrician who diagnosed him, mainly to rule out any seizure activity. The neurologist recommended HBOT as a helpful treatment. Also, Charlie's DAN doctor highly recommends it and actually runs a HBOT clinic out of his office. The downside is that HBOT is EXTREMELY expensive, average of $90-$100 a "dive" with 40 dives each round being typical. So, you're talking about $4000 for a round of HBOT, and usually repeated rounds are recommended. It's a very promising therapy, but it's a hefty price to pay, especially when there is no guarantee your child will respond to it. But, as fate would have it, the doctor that I met has a hyperbaric chamber in her office and is going to allow us to try this treatment for Charlie. I cannot even express how grateful we are and how lucky we feel to have met this woman.
So, Charlie starts HBOT tomorrow. Either Adam or I will have to go in the chamber with him as, almost certainly, he will not want to go in there by himself (and certainly will not want to stay in there for an hour by himself). In the beginning, it is recommended that Charlie go every day if possible for the first 40 days to see if he responds favorably. So, we are going to try to make this happen. It won't be easy juggling Charlie's school and therapy, a feisty 2 year old, a husband who travels a lot for work, my meagher work schedule, and traveling up to Cornelius for HBOT. . . but we are going to make it work!!! My mom is coming down this week to help while Adam is away. The second week of February, Adam's mom will come down to help out, and the next week Adam's dad will be coming. We couldn't do this without our families so we are, again, ever so grateful.
I am anxious to see how or if Charlie responds, but I am cautiously optimistic. I know not all children respond, but many do. And, like other interventions, some respond in dramatic ways while others show only small improvements. You never know until you do it. I am just so glad that we get the chance to try this therapy for Charlie as many parents never get the opportunity. Please keep your fingers crossed for us and say a little prayer. We'll keep you posted on our progress.
We've had a busy 3 months since my last post. We had a fabulous Christmas this year, celebrating with Adam's family in Ft. Wayne, IN. We finally got to see Che Jacobs (aka the new house on Big Long Lake). It is just beautiful, and we really did not want to leave. :) Charlie and Addison just love spending time with their big cousins George, Alice and Sophia. Charlie, in particular, has always taken a liking to George. Addison was quite smitten with Alice who just showered her with attention. (A sure way to win over Addison's attention seeking heart.)
Over all, Charlie did seem to be excited about Christmas although he never spoke about it (beyond a few attempts at singing what sounded like Christmas carols). He did a great job at sitting through church on Christmas Eve and enjoyed a few of his presents, including an array of sensory balls and a slinky. However, he was not a fan of opening presents. In fact, it seemed to almost upset him or make him nervous at first. He got more used to it, but never got into the act of ripping open wrapping paper. Guess it just makes life easier for me for future gift giving occasions if I don't have to wrap. :) Addison was more than happy to open presents her big brother did not care to open himself, as you can imagine.
Charlie has continued to do well at his (not so) new school. He is now sitting through circle time all on his own. In the past, he had to be repeatedly prompted and reinforced to sit through circle time. Now, he has learned that this behavior is expected and does so all on his own. That's a big development for us! He has even clapped along with music all on his own as well. Another big and exciting development for us. To me, this shows he is more aware of his surroundings and what is expected of him in a school environment. He's doing really well, and I am very proud of him.
Charlie's tummy issues are much better now. For the first time in a long time, we are seeing some solid BMs. After the last OAT test, we were delighted to see that Charlie's clostridia levels were in the normal range. We are still working on potty training. He will pee in the potty, but no poop yet. And, to be frank, he will just as readily pee in his pull up as the potty. So, we have to try to stay on top of him and put him on the potty regularly if we want to go an extended period of time with a dry pull-up. I have been reading a little about potty training a child with autism. I'd like to work on this over the summer when Charlie will be home with me a little more. It is not going to be an easy task.
In the last month, we have added some homeopathic remedies into our treatment protocol. I met a wonderful doctor of natural medicine through a local on-line autism web group. She contacted me for some legal advice. At the same time, I was reading up on homeopathic and natural remedies so I was very interested in her practice. She recommended some new supplements for us. We started 3 new ones -- GabaFlo, AcetylFlo and NeuroTrans Active. All of these are sprays which we spray in Charlie's mouth 2-3 times a day. We have seen some changes since we started these supplements, most notably an increase in language. Granted it is mostly echolalia, but I'll take any increase at this point. His teachers at school even commented that he was more talkative than he had been. (Apparently he recited a line one of his teacher's likes to use quite often: "That's the bottom line." Around our house, he repeats "That's enough" and "Knock it off" which are two things I say daily around here.) He has also spontaneously requested things like "water" and "chip." A couple of times it really sounded like he said "thank you" when I handed him something to eat or drink. His pronounciation is not always clear so sometimes it is kind of hard to tell. But, it gets a little clearer every day. However, we have also seen some increased stimming, mostly spinning. This isn't too surprising as any new supplement can cause increased stimming or other behaviors until you get used to them. So, for now, we will just keep our eye on the frequency of the stims.
We are also extremely excited to be starting HBOT tomorrow!!! We have wanted to try HBOT for some time now. When Charlie was first diagnosed, we took him to see a neurologist on the advice of the developmental pediatrician who diagnosed him, mainly to rule out any seizure activity. The neurologist recommended HBOT as a helpful treatment. Also, Charlie's DAN doctor highly recommends it and actually runs a HBOT clinic out of his office. The downside is that HBOT is EXTREMELY expensive, average of $90-$100 a "dive" with 40 dives each round being typical. So, you're talking about $4000 for a round of HBOT, and usually repeated rounds are recommended. It's a very promising therapy, but it's a hefty price to pay, especially when there is no guarantee your child will respond to it. But, as fate would have it, the doctor that I met has a hyperbaric chamber in her office and is going to allow us to try this treatment for Charlie. I cannot even express how grateful we are and how lucky we feel to have met this woman.
So, Charlie starts HBOT tomorrow. Either Adam or I will have to go in the chamber with him as, almost certainly, he will not want to go in there by himself (and certainly will not want to stay in there for an hour by himself). In the beginning, it is recommended that Charlie go every day if possible for the first 40 days to see if he responds favorably. So, we are going to try to make this happen. It won't be easy juggling Charlie's school and therapy, a feisty 2 year old, a husband who travels a lot for work, my meagher work schedule, and traveling up to Cornelius for HBOT. . . but we are going to make it work!!! My mom is coming down this week to help while Adam is away. The second week of February, Adam's mom will come down to help out, and the next week Adam's dad will be coming. We couldn't do this without our families so we are, again, ever so grateful.
I am anxious to see how or if Charlie responds, but I am cautiously optimistic. I know not all children respond, but many do. And, like other interventions, some respond in dramatic ways while others show only small improvements. You never know until you do it. I am just so glad that we get the chance to try this therapy for Charlie as many parents never get the opportunity. Please keep your fingers crossed for us and say a little prayer. We'll keep you posted on our progress.
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