Some people say it's "crazy", and there's no "evidence" that supplements help a child with autism. And, any parent who's pursuing biomedical intervention will tell you that those people are the one's who are crazy. We've seen the ups and downs that directly corelate to supplements & yeast medications. The past 5 days have shown me just how dependent Holden is on his supplements and medications. He came down with the flu on Saturday, and hasn't been able to tolerate his many vitamins, supplements, and anti-yeast meds for 5 days. In those 5 days alone, he has regressed to not responding when his name is called, complete echolalia (no spontaneous language), and living in his own little world. I wasn't able to chelate this past weekend, either, because of the sick he's had going on. I see such a big difference in him; there's no doubt in my mind that he's very dependent on these supplements/vitamins/meds.
That being said, he's still the same loving and most gorgeous child on the planet. He's just "with us" much less that he normally is.
Today, I hope to get him back on track with his daily doses. And, I hope it takes less time for him to return to us, than it did for us to lose him, again (5 days). Cross your fingers!
7.29.2009
7.23.2009
7.22.2009
Well, it's been a while ....
I haven't updated much lately. Holden started a new school exactly 2 weeks ago today. The first 5 days or so were used for assessments. I met with his lead therapist last week to go over the results. And, not surprisingly - he exceled in some areas, and was deficient in others. Hello, Autism. He scored high in Play Skills - which is great, actually. He also scored high in Immitation Skills - which is another great one to have. He was low in Manding (requests), Labeling, and of course, Conversational Communication. Again, hello Autism.
So, his treatment plan is written. Here's a snapshot:
- Requests for various items and activities using verbs varied 2-3 word phrases.
- Follows 1 step instructions within functional contexts (ex: get your lunch, stand up, clean up, etc.) to increase receptive understanding of language
- Receptively identifies actions, both in pictures and real-time
- Matches non-identical objects or non-identical pictures in a messy array of 5-8
- Receptively identifies items based on single feature, function, class, then moving on to 2-3 component FFC's (ex: Which one is the red food?)
- Increase overall vocal output through verbal imitation of a set of functional words that are frequently used in daily routines (ex: open, go, yes, no)
- Receptively identifies various attributes of different items (ex: big/little, wet/dry, long/short, etc) using objects and pictures
- Answers basic safety-related social questions (wh-questions)
- Develop fine motor skills in preparation for handwriting through activities such as lacing, stringing beads, using tongs, etc.
Social & Play Goals:
- Spontaneously attends to peers during play situations
- Initiates physical interaction with peers
- Engages in sustained social play with peers
- Spontaneously responds to the mands (requests) from peers
- Spontaneously mands to peers
- Line up upon request to leave an area without additional prompts
- Respond to group instructions in the presence of 2-3 children
- Sits with peers for at least 10 minutes while attending to materials and/or teacher
I'm optimistically hopeful.
Aside from starting school, he's been having a bit of a regression period going on for the past 2 weeks. His focus is pretty much non-existent right now. Today's been better. But, the past 2 weeks have been a challenge. It's so hard to watch him do SOOOOO well for months at a time, and then out of nowhere, he just slips. Almost like it's a cruel game of "back and forth". Like, someone allows us to see a snapshot of what he 'could' be like, and 'should' be like, and then they come and take it away without warning and he's back to not responding to his name, stimming, and displaying classic autistic symptoms.
Even though it's been 2 years, it's no easier to watch him during these regression periods than it was the first time I realized he had autism. I guess it never does get easier to watch your kiddo "check out".
So, I'm hoping the next time I update - I'll have some kind of miracle to report.
-R
So, his treatment plan is written. Here's a snapshot:
- Requests for various items and activities using verbs varied 2-3 word phrases.
- Follows 1 step instructions within functional contexts (ex: get your lunch, stand up, clean up, etc.) to increase receptive understanding of language
- Receptively identifies actions, both in pictures and real-time
- Matches non-identical objects or non-identical pictures in a messy array of 5-8
- Receptively identifies items based on single feature, function, class, then moving on to 2-3 component FFC's (ex: Which one is the red food?)
- Increase overall vocal output through verbal imitation of a set of functional words that are frequently used in daily routines (ex: open, go, yes, no)
- Receptively identifies various attributes of different items (ex: big/little, wet/dry, long/short, etc) using objects and pictures
- Answers basic safety-related social questions (wh-questions)
- Develop fine motor skills in preparation for handwriting through activities such as lacing, stringing beads, using tongs, etc.
Social & Play Goals:
- Spontaneously attends to peers during play situations
- Initiates physical interaction with peers
- Engages in sustained social play with peers
- Spontaneously responds to the mands (requests) from peers
- Spontaneously mands to peers
- Line up upon request to leave an area without additional prompts
- Respond to group instructions in the presence of 2-3 children
- Sits with peers for at least 10 minutes while attending to materials and/or teacher
I'm optimistically hopeful.
Aside from starting school, he's been having a bit of a regression period going on for the past 2 weeks. His focus is pretty much non-existent right now. Today's been better. But, the past 2 weeks have been a challenge. It's so hard to watch him do SOOOOO well for months at a time, and then out of nowhere, he just slips. Almost like it's a cruel game of "back and forth". Like, someone allows us to see a snapshot of what he 'could' be like, and 'should' be like, and then they come and take it away without warning and he's back to not responding to his name, stimming, and displaying classic autistic symptoms.
Even though it's been 2 years, it's no easier to watch him during these regression periods than it was the first time I realized he had autism. I guess it never does get easier to watch your kiddo "check out".
So, I'm hoping the next time I update - I'll have some kind of miracle to report.
-R
7.02.2009
real play! (cont.)
OHHHH, forgot to mention something in my last post. During bathtime, Jackson loves pouring water on Holden's head. Course, Holden doesn't necessary love when he does that, but anyway. The point. The last couple of nights I noticed Holden looking over at Jackson when he pours water on his head ... then taking the cup and doing the same thing to Jackson! So, I'm going to consider this "real play", too. He's interacting ... back and forth.
real play!
And, I mean ... full-on giggling, laughing, hiding, more laughing ... PLAYING with Jackson this week. I was going to blog about it on Monday, but wondered if it were just a fluke. Sometimes you think they really get something and then the next day you wonder if you were in fact dreaming. Not this time! At least I don't think so anyway.
Holden started bringing a blanket out of the bedroom and hiding under it. He would take the cover off and say ... "there he is!". Jackson wanted in on the action so he started tackling Holden while he was under the blanket. I expected a scream from Holden, which is his normal reaction to Jackson messing with him. But, instead, he started laughing. Cutest thing. Then he would take the cover off and say ... "there he is!" and just laugh and laugh (while looking at Jackson the whole time). He's done this everyday since Monday. So, no fluke. He's playing, appropriately, with his brother.
Also, today in the car Jackson was crying. I noticed Holden look over at him with a look of curiosity. Once Jackson stopped crying, Holden started giggling. Then they were both giggling.
It's like they're FINALLY becoming "partners in crime".
I love it.
Holden started bringing a blanket out of the bedroom and hiding under it. He would take the cover off and say ... "there he is!". Jackson wanted in on the action so he started tackling Holden while he was under the blanket. I expected a scream from Holden, which is his normal reaction to Jackson messing with him. But, instead, he started laughing. Cutest thing. Then he would take the cover off and say ... "there he is!" and just laugh and laugh (while looking at Jackson the whole time). He's done this everyday since Monday. So, no fluke. He's playing, appropriately, with his brother.
Also, today in the car Jackson was crying. I noticed Holden look over at him with a look of curiosity. Once Jackson stopped crying, Holden started giggling. Then they were both giggling.
It's like they're FINALLY becoming "partners in crime".
I love it.
6.28.2009
summertime
I haven't had much time to blog since school let out for the summer. 3 kids keep you very busy, to say the least.
I don't really have a lot to report with Holden. He's doing well, although now it's very slow, steady gains. As compared to big "wows" we were seeing. I'm not sure which is better honestly. The big "wows" tend to take you aback a little more, just because maybe you aren't expecting it. But, the slow, steady gains make me believe that he's just continuing to learn and progress on more of a regular basis. Make sense? Well, if not, it is early this morning and I have had only 1 cup of coffee so far.
He has been attending the ESY summer program through the public school. He goes M-Th, from 8-noon. They aren't teaching any new skills. Only focusing on maintenence and making sure he's retaining all he learned and mastered throughout last school year. Well, I decided the last couple of days of school to call our insurance company to find out if it covered any ABA therapy at all because I wanted to supplement the summer school program with additional therapy. And let me tell you, it has turned into a major shocker! Seems that our insurance falls under "Texas mandates", instead of federal mandates. Which, apparently, is GREAT. Over the past few weeks, I've found out that Holden will be able to attend a wonderful ABA clinic FIVE days per week, from 9am - 4pm!! And, our cost? We pay a one-time $50.00 copay. Insurance picks up the remaining amount. Crazy, I know. I wasn't expecting it, at all. So, I'm going to remove him from the public school summer ESY and put him into the clinic fulltime. I'll re-evaluate in a month and a half to see how he's doing there before I decide if I'm going to keep him in the clinic or put him back in his classroom. I love his school and it's a great program, but, we only have 2 years until he HAS to be enrolled in school in the state of Texas and I'm very hopeful that if we're aggressive enough, he can enter in a regular/mainstream classroom with the help of an Aide. So, I will keep you posted on how he does at the clinic. His start date is July 8th.
We are still chelating. Once a week, using EDTA + DMSA. Last week, I only did the EDTA because he seemed restless and didn't want to push it. He ended up sick for 2 days after chelation night. Not sure if it was because of chelation or just a virus he picked up somewhere. I've heard of some kids getting sick after chelation because of the redistribution of the toxins. I gave him charcoal last week, twice, and it seemed to help a little.
Well, looks like the little chickens are up for the day, so more later!
Here's a few pictures of our summer "adventures" so far (in HOT AS HECK TEXAS)
I don't really have a lot to report with Holden. He's doing well, although now it's very slow, steady gains. As compared to big "wows" we were seeing. I'm not sure which is better honestly. The big "wows" tend to take you aback a little more, just because maybe you aren't expecting it. But, the slow, steady gains make me believe that he's just continuing to learn and progress on more of a regular basis. Make sense? Well, if not, it is early this morning and I have had only 1 cup of coffee so far.
He has been attending the ESY summer program through the public school. He goes M-Th, from 8-noon. They aren't teaching any new skills. Only focusing on maintenence and making sure he's retaining all he learned and mastered throughout last school year. Well, I decided the last couple of days of school to call our insurance company to find out if it covered any ABA therapy at all because I wanted to supplement the summer school program with additional therapy. And let me tell you, it has turned into a major shocker! Seems that our insurance falls under "Texas mandates", instead of federal mandates. Which, apparently, is GREAT. Over the past few weeks, I've found out that Holden will be able to attend a wonderful ABA clinic FIVE days per week, from 9am - 4pm!! And, our cost? We pay a one-time $50.00 copay. Insurance picks up the remaining amount. Crazy, I know. I wasn't expecting it, at all. So, I'm going to remove him from the public school summer ESY and put him into the clinic fulltime. I'll re-evaluate in a month and a half to see how he's doing there before I decide if I'm going to keep him in the clinic or put him back in his classroom. I love his school and it's a great program, but, we only have 2 years until he HAS to be enrolled in school in the state of Texas and I'm very hopeful that if we're aggressive enough, he can enter in a regular/mainstream classroom with the help of an Aide. So, I will keep you posted on how he does at the clinic. His start date is July 8th.
We are still chelating. Once a week, using EDTA + DMSA. Last week, I only did the EDTA because he seemed restless and didn't want to push it. He ended up sick for 2 days after chelation night. Not sure if it was because of chelation or just a virus he picked up somewhere. I've heard of some kids getting sick after chelation because of the redistribution of the toxins. I gave him charcoal last week, twice, and it seemed to help a little.
Well, looks like the little chickens are up for the day, so more later!
Here's a few pictures of our summer "adventures" so far (in HOT AS HECK TEXAS)
6.10.2009
fork
Ok, so, for any parent of a typical 4 year old, this will no doubt ... NOT be exciting. But, for those of us dealing with a child with autism. VERY exciting.
This morning, Holden was eating his scrambled eggs. When he was done eating, he did his usual routine of putting his plate in the kitchen. (Learned that at school). He left his fork on the table. So when he came back into the room, I pointed to the fork and said to him "Holden, can you put your fork away, too?" and he looked at it, said "OH!", ran over to the table, grabbed his fork, and put it in the kitchen. He came back all "smiley" and sat next to me.
Why is this exciting? Well, 1. he actually looked at where I was pointing. 2. I only gave the direction ONE time. And, 3. He followed the direction!
This morning, Holden was eating his scrambled eggs. When he was done eating, he did his usual routine of putting his plate in the kitchen. (Learned that at school). He left his fork on the table. So when he came back into the room, I pointed to the fork and said to him "Holden, can you put your fork away, too?" and he looked at it, said "OH!", ran over to the table, grabbed his fork, and put it in the kitchen. He came back all "smiley" and sat next to me.
Why is this exciting? Well, 1. he actually looked at where I was pointing. 2. I only gave the direction ONE time. And, 3. He followed the direction!
6.04.2009
End of School Update
So, little Miss Zoe got ALL A's for her final grades. ALL A's. Very proud of her!!!
Holden's update is as follows: (his is different than just grades, so I have to update all of his "objectives" individually)
GOAL: Holden will master the skills needed to effectively communicate.
Comments: Holden has mastered 18 motor imitative responses this 9 weeks. He has also mastered 5 new mands (signs with vocal approimations) and acquired at least 5 to learn. We will continue to target new mands next school year and he will work to maintain his mastered ones in ESY (summer school). We have tested 15 tacts (signs wtih vocal approximations) and will target new ones next school year. He can echo an approximation to at least 15 words and has mastered 3 this nine weeks. We will add new echoics next school year. Good job!
GOAL: Holden will improve fine and/or gross motor skills
Comments: Holden has mastered these objectives for this school year, we will target new objectives next school year. Great work, Holden!
GOAL: Holden will improve cognitive skills
Comments: Holden has mastered 11 visual performance skills this 9 weeks and has become a master at basic puzzles. He has also mastered 6 new receptive language skills this 9 weeks! Holden works very well at the table and is okay if reinforcement is delayed after completing a skill. Great job, Holden!
GOAL: Holden will improve personal-social skills
Comments: Holden attends the entire circle time, transitions well and participates in singing and doing the actions. He makes occasional eye contact and will attempt to copy new motions the teachers are doing. Holden will play nicely with the other students, occasionally taking something they have if he likes it. He takes turns nicely and is not disturbed by the other children. Great playing & singing, Holden!
GOAL: Holden will improve daily living skills
Comments: Holden is a pro at the backpack routine, we no longer prompt, as he seems to be prompt dependent when we do so. He occasionally needs physical guidance for reaching the basket to get his folder out, but can do the routine independently. Good job!
GOAL: Holden will increase positive behaviors and/or decrease negative behaviors
Comments: Holden's tantrums have decreased substantially this school year. He has also dropped his stimmy circles, only engaging in them on occasion. He will still get mad when told "no" to lining up toys, running off the playground, or sitting inappropriately. This is all age-appropriate and we expect to see continued progress next school year. Way to go, Holden!
Holden's update is as follows: (his is different than just grades, so I have to update all of his "objectives" individually)
GOAL: Holden will master the skills needed to effectively communicate.
Comments: Holden has mastered 18 motor imitative responses this 9 weeks. He has also mastered 5 new mands (signs with vocal approimations) and acquired at least 5 to learn. We will continue to target new mands next school year and he will work to maintain his mastered ones in ESY (summer school). We have tested 15 tacts (signs wtih vocal approximations) and will target new ones next school year. He can echo an approximation to at least 15 words and has mastered 3 this nine weeks. We will add new echoics next school year. Good job!
GOAL: Holden will improve fine and/or gross motor skills
Comments: Holden has mastered these objectives for this school year, we will target new objectives next school year. Great work, Holden!
GOAL: Holden will improve cognitive skills
Comments: Holden has mastered 11 visual performance skills this 9 weeks and has become a master at basic puzzles. He has also mastered 6 new receptive language skills this 9 weeks! Holden works very well at the table and is okay if reinforcement is delayed after completing a skill. Great job, Holden!
GOAL: Holden will improve personal-social skills
Comments: Holden attends the entire circle time, transitions well and participates in singing and doing the actions. He makes occasional eye contact and will attempt to copy new motions the teachers are doing. Holden will play nicely with the other students, occasionally taking something they have if he likes it. He takes turns nicely and is not disturbed by the other children. Great playing & singing, Holden!
GOAL: Holden will improve daily living skills
Comments: Holden is a pro at the backpack routine, we no longer prompt, as he seems to be prompt dependent when we do so. He occasionally needs physical guidance for reaching the basket to get his folder out, but can do the routine independently. Good job!
GOAL: Holden will increase positive behaviors and/or decrease negative behaviors
Comments: Holden's tantrums have decreased substantially this school year. He has also dropped his stimmy circles, only engaging in them on occasion. He will still get mad when told "no" to lining up toys, running off the playground, or sitting inappropriately. This is all age-appropriate and we expect to see continued progress next school year. Way to go, Holden!
Last day (almost) of school
Just a few pictures from Holden's last day of school party yesterday. Today's actually the last day ... but the party was yesterday. He's done so good - I almost can't wait for school to start again so that he can continue to learn more!
6.02.2009
enhansa update
i hesitate to write this ... cause, i'm sure i'll jinx something. but, holden seems to be finally adjusting well to the enhansa. i still think he may have phenol issues; but so far, nightly epsom salt / baking soda baths seem to be helping (a lot). i was already doing epsom salt baths, but not religiously. now, i'm making sure that EVERY night, he has at least 2 cups of salts in his bath and that he sits and plays for at least 15 minutes. i haven't seen any red cheeks since last week, and he's definitely talking more. i have no idea if that has to do with the enhansa or not. he's doing a lot of scripting and singing songs from his movies/tv shows. which, hey, if it's language of any kind, i'll take it right now! we'll work out the details later! he's also showing that he understands (at least somewhat) certain emotions. jackson was crying this morning and i said "holden, tell jackson "don't cry"") and he said ... "jackson, don't cry" in a really sad voice. like he knew that crying was sad. he's also been pretending to talk on the phone. he'll walk in the other room and make the sound of a phone ringing and then put his hand up to his ear and say "hello"....then...."have a good day"....and then...."bye". i tried having a pretend phone conversation with him, but haven't gotten that far yet.
so who knows. i may increase his dose by 75mgs and see if i see anything different.
so who knows. i may increase his dose by 75mgs and see if i see anything different.
5.21.2009
enhansa
I decided to start the Enhansa last Saturday, even though we have family in from out of town. I started with a 150mg. dose...75mgs in the a.m. and 75mgs in the p.m. The stuff (powder) is yellow/orange and just smells nasty, so it took me some trials to find a way to get it into him. I put it in his juice for the first 2-3 days and that didn't work. He probably didn't even get 1/2 the dose on those days because I just couldn't get him to drink his juice. So, I decided to try it in some organic, all natural, maple syrup. I mix it in with about a teaspoon full and then give it to him. He seems to tolerate it much better that way. I tried it in apple sauce and he gagged every single time. So, instead of torturing the poor kid - I tried the maple syrup. For now, that seems to be the way to go.
Negatives - I'm pretty sure I've seen some die-off the past few days. His stimming has increased and his eye contact has decreased. I've been fighting the die-off with upping his dose of Biotin everyday, and even giving activated charcoal on the second day. It seemed to help.
Positives - The negatives have decreased as of today. We are now on day 6 (although, the first 2 days were probably useless because he wasn't taking the juice). The eye contact is back, and he's much easier distracted from the stimming. He's sleeping better, too. Yesterday when I picked him up from school, his teacher told me he had spontaneously labeled some cards they were cutting out. She said one of his teachers was sitting at a table and cutting out picture cards and he walked over and started labeling them (correctly). Now, he does that at home occassionally, but apparently hasn't done it yet at school. She said that typically means he won't have to stay in the communications class and will eventually move out and into the support center, before heading to a regular class. Of course she's only speculating, but, it's nice to hear the "hope".
I told her that we would work on things over the summer and she acted a little concerned about him progressing TOO much - she doesn't want him to not qualify for services next year. I tend to agree with her. Yes, I want him to progress - and quickly. I want him to be happier and able to communicate, of course! But, I know that we need intense therapies for the next 2 years, or he'll have less of a chance of fitting in with his peers at some point. So, I don't want them to pull him out of this classroom because he wouldn't get near the intense ABA that he's getting there. So, it's a catch 22, I suppose.
So, will report more next week (or sooner if needed) regarding the Enhansa and the results.
Oh, I almost forgot!! Today, he said "Hi Uncle D" when his Uncle walked in the door. Yes, it was prompted, but stringing 3 words together .... as far as I'm concerned, that's a sentence.
Negatives - I'm pretty sure I've seen some die-off the past few days. His stimming has increased and his eye contact has decreased. I've been fighting the die-off with upping his dose of Biotin everyday, and even giving activated charcoal on the second day. It seemed to help.
Positives - The negatives have decreased as of today. We are now on day 6 (although, the first 2 days were probably useless because he wasn't taking the juice). The eye contact is back, and he's much easier distracted from the stimming. He's sleeping better, too. Yesterday when I picked him up from school, his teacher told me he had spontaneously labeled some cards they were cutting out. She said one of his teachers was sitting at a table and cutting out picture cards and he walked over and started labeling them (correctly). Now, he does that at home occassionally, but apparently hasn't done it yet at school. She said that typically means he won't have to stay in the communications class and will eventually move out and into the support center, before heading to a regular class. Of course she's only speculating, but, it's nice to hear the "hope".
I told her that we would work on things over the summer and she acted a little concerned about him progressing TOO much - she doesn't want him to not qualify for services next year. I tend to agree with her. Yes, I want him to progress - and quickly. I want him to be happier and able to communicate, of course! But, I know that we need intense therapies for the next 2 years, or he'll have less of a chance of fitting in with his peers at some point. So, I don't want them to pull him out of this classroom because he wouldn't get near the intense ABA that he's getting there. So, it's a catch 22, I suppose.
So, will report more next week (or sooner if needed) regarding the Enhansa and the results.
Oh, I almost forgot!! Today, he said "Hi Uncle D" when his Uncle walked in the door. Yes, it was prompted, but stringing 3 words together .... as far as I'm concerned, that's a sentence.
5.12.2009
DAN! Update
We had a DAN! appointment yesterday. Labs looked good, although Holden may be slightly anemic. Which isn't surprising, since his diet is pretty limited. We will keep a watch on that and see what his numbers are next time around.
Will continue to chelate using EDTA & DMSA combo 1x/week for now. If we think he's plateauing, we'll consider 1-2 IV's per month, and suppositories 1-2 times per month to see if we can kick things in gear! But, for now, sticking with suppositories.
I'm going to start him on Enhansa on Friday. We're to start out at 150mg per day for 2 weeks. If we see improvements, he wants us to stay at that dose. If no improvements, we can increase a little at a time until we do see 'good things'.
We are going to do a 1 month round of Diflucan to see if we can get the yeast markers down. Then, we'll return to Nizoral. Sometimes I think if we could just get the yeast under control - we'd see some major gains. But, chelation will always stir up yeast ... so as long as we're chelating, we have to deal with yeast issues as well, unfortunately!
So...we march on!
Will continue to chelate using EDTA & DMSA combo 1x/week for now. If we think he's plateauing, we'll consider 1-2 IV's per month, and suppositories 1-2 times per month to see if we can kick things in gear! But, for now, sticking with suppositories.
I'm going to start him on Enhansa on Friday. We're to start out at 150mg per day for 2 weeks. If we see improvements, he wants us to stay at that dose. If no improvements, we can increase a little at a time until we do see 'good things'.
We are going to do a 1 month round of Diflucan to see if we can get the yeast markers down. Then, we'll return to Nizoral. Sometimes I think if we could just get the yeast under control - we'd see some major gains. But, chelation will always stir up yeast ... so as long as we're chelating, we have to deal with yeast issues as well, unfortunately!
So...we march on!
5.10.2009
the normal ups and downs
As it normally is with autism, just when you think things are worse than they've been in a long time - this kid comes out of it overnight. Literally, over night.
Yesterday, Holden was still having an increase in "autistic symptoms". Stimming, lack of eye contact, not interacting with us as much, etc. Today, he has been a different kid. The only thing I've done since yesterday? Chelation. Last night, we chelated with 1 DMSA suppository and 1 EDTA suppository. DMSA at around 8:30pm, and EDTA at 9:15pm. Typically, for Holden, the day after chelation is a challenge. Then he eases out of it by the 2nd day. It was different this time. Today, he woke up happy. He was playing with Jackson, and more importantly, he wanted Jackson to play with him. He wanted Jackson to chase him and they laughed and ran throughout the house. He was singing, playing, smiling, and loving. So different than how he was even just yesterday.
Who knows why. I don't know if it's possible for it to be caused by the chelation last night. I suppose it could be...maybe we just got a great pull with this round? Or, maybe he just felt better today, physically.
Whatever it was ... it made my Mother's Day the best ever.
Yesterday, Holden was still having an increase in "autistic symptoms". Stimming, lack of eye contact, not interacting with us as much, etc. Today, he has been a different kid. The only thing I've done since yesterday? Chelation. Last night, we chelated with 1 DMSA suppository and 1 EDTA suppository. DMSA at around 8:30pm, and EDTA at 9:15pm. Typically, for Holden, the day after chelation is a challenge. Then he eases out of it by the 2nd day. It was different this time. Today, he woke up happy. He was playing with Jackson, and more importantly, he wanted Jackson to play with him. He wanted Jackson to chase him and they laughed and ran throughout the house. He was singing, playing, smiling, and loving. So different than how he was even just yesterday.
Who knows why. I don't know if it's possible for it to be caused by the chelation last night. I suppose it could be...maybe we just got a great pull with this round? Or, maybe he just felt better today, physically.
Whatever it was ... it made my Mother's Day the best ever.
5.07.2009
downer
I haven't felt much like posting lately, which is why there's no updates since 4/24. The past week - 2 weeks has been challenging. Holden's symptoms have gradually gotten worse over that period of time. As of yesterday afternoon, he's extremely defiant, angry, looks as though he hasn't slept in a week (even though he IS sleeping), quiet, unhappy, unable to focus, and has lost a lot of eye contact. I am praying this "regression" doesn't last too long. I have a couple of theories as to why this one's happening, but then again, I could be wrong. This may just be another "healing regression" that he will come out of on his own. It's just that this one's lasted longer than the one's previously. Yesterday afternoon, I "fought" with him for hours because he would climb up on the arm of the couch and jump off. Might not sound too bad, and kind of "typical" for his age ... but we have a tile floor. And he wasn't bending his knees to brace himself for the "fall" - he would stiffen up his legs and I was so scared he was going to break an ankle or something! I tried telling him "no!" numerous times (which normally works for him), I tried putting him in time out, I tried sitting in his way so he couldn't get to the arm of the couch. He would just try climbing over my head. No matter how many times I would take him down and tell him "NO!", he would wait unil I was 10 feet away and do it again. It was exhausting. When Dietrich came through the door, I went out of it. I went for a walk and stayed gone for an hour. I just needed to get away.
My ideas:
- Yeast. We've been chelating now for 2 months using EDTA + DMSA on a weekly basis, using suppositories. Before we began this round, his OATS showed extremely high levels of yeast, so we treated with Nizoral for a month before starting chelation (and we're still using Nizoral).
-He's been off the NuThera for 2 days now because I haven't been able to order it yet. But, NuThera is just a multi - so, would it cause this much of a reaction to not be taking it??
-I've given him OoO twice since Saturday - just a few drops at a time. ?????
-Sensory input? That has nothing to do with the being tired, etc. But, the jumpping off of the couch and landing like that - kind of 'shocks' the legs and joints. I thought about this this morning, so I'm going to check into our OT benefits.
????????
My ideas:
- Yeast. We've been chelating now for 2 months using EDTA + DMSA on a weekly basis, using suppositories. Before we began this round, his OATS showed extremely high levels of yeast, so we treated with Nizoral for a month before starting chelation (and we're still using Nizoral).
-He's been off the NuThera for 2 days now because I haven't been able to order it yet. But, NuThera is just a multi - so, would it cause this much of a reaction to not be taking it??
-I've given him OoO twice since Saturday - just a few drops at a time. ?????
-Sensory input? That has nothing to do with the being tired, etc. But, the jumpping off of the couch and landing like that - kind of 'shocks' the legs and joints. I thought about this this morning, so I'm going to check into our OT benefits.
????????
4.24.2009
daily data sheet from school today
"Holden did awesome listening today and played with his friend from class on the playground, saying "ready, set, go!" on the slide."
some updates from school
I received a great "daily sheet" home yesterday. It simply said "Holden did very well working at the table today and he was perfect on his manding."
That may not *sound* like much to most people, but it's a lot for us. Manding is asking for the things that you want, making requests. Basically, it's teaching him that by talking or signing for things he wants ... he can get them.
So, I emailed to ask for a little more explanation and here's her response:
---Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today. We still pair sign/vocal although his approximations are getting better. The items he is manding for unprompted are cereal (dry cereal and his cereal bar), cookie, cake (muffin), pretzel (struggles both with sign and vocal), juice, light, candy, chip, chicken and bubbles. He mands for other items intermittently and needs some prompting to ask for them. They are fish (fish toy), circle (poker chips to put in a container), face (happy face toy), boat (wooden Noah’s ark), and other toys. I am starting to have him mand for other things in his lunch such as his “meat” (lunch meat) and “sandwich”. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).
I emailed her back and asked how many words or approximations she thinks he has at this point. This is her response to me:
---I would have to look at his book, but unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say , but his Kaufman objectives is around 8 and they are getting better too. He does interrupt during speech and we have a procedure for it, but he loves saying his words and gets in a hurry. For example, we will present the word "eat" and as were saying it, he interrupts and starts to say it too. We have to say "wait", put up a clipboard, count
to 5 and re-present the word. It works very well. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.
Let me just pull out the high points of that email conversation, as far as I'm concerned.
1. Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today.
2. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).
3. unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say. (I think his unprompted is higher, so I'm going to create a notebook to keep track of everything he says that's unprompted).
4. he loves saying his words
5. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.
The update couldn't get much better in my eyes.
That may not *sound* like much to most people, but it's a lot for us. Manding is asking for the things that you want, making requests. Basically, it's teaching him that by talking or signing for things he wants ... he can get them.
So, I emailed to ask for a little more explanation and here's her response:
---Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today. We still pair sign/vocal although his approximations are getting better. The items he is manding for unprompted are cereal (dry cereal and his cereal bar), cookie, cake (muffin), pretzel (struggles both with sign and vocal), juice, light, candy, chip, chicken and bubbles. He mands for other items intermittently and needs some prompting to ask for them. They are fish (fish toy), circle (poker chips to put in a container), face (happy face toy), boat (wooden Noah’s ark), and other toys. I am starting to have him mand for other things in his lunch such as his “meat” (lunch meat) and “sandwich”. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).
I emailed her back and asked how many words or approximations she thinks he has at this point. This is her response to me:
---I would have to look at his book, but unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say , but his Kaufman objectives is around 8 and they are getting better too. He does interrupt during speech and we have a procedure for it, but he loves saying his words and gets in a hurry. For example, we will present the word "eat" and as were saying it, he interrupts and starts to say it too. We have to say "wait", put up a clipboard, count
to 5 and re-present the word. It works very well. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.
Let me just pull out the high points of that email conversation, as far as I'm concerned.
1. Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today.
2. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).
3. unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say. (I think his unprompted is higher, so I'm going to create a notebook to keep track of everything he says that's unprompted).
4. he loves saying his words
5. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.
The update couldn't get much better in my eyes.
4.22.2009
Jim Carrey's Article re: Vaccines
Click on the title of the post to read the article. It's worth the time!
4.16.2009
YES!!
So, I sent this to a friend of mine as an update on our DAN! appointment today. I realized I needed to add it here, too.
The appointment went well. I realized a LOT today. Remember a few weeks back (3/26, to be exact), when I sent you that message and I was just so down about things? That Holden was stimming nonstop and staying up late and regressing and I just couldn't figure out what was going on with him? What I was doing wrong, etc? Well. I have a friend in Orlando who's son went to the same ABA clinic as Holden. We became friends and have kept in touch and she told me a while back that her son would have these episodes of "regression", and then once it was over, he would always make these huge leaps in progress. She realized they were "healing regressions". That during chelation, his body was dumping metals and toxins into his blood stream and causing him to feel horrible (thus, the stimmy, not sleeping, irritability, etc...). And once he was able to rid his body of those loose metals/toxins, he would come out of it and make those great leaps and bounds in development. I understood what she was saying ... but didn't really understand, ya know? So, it hit me today. This is what happened with Holden. It has to be. It was HORRIBLE this last time around (the week of 3/22-3/27). I felt hopeless, helpless. But, in the past 2 weeks or so, I've seen some major improvements. Major. And, in the last 3-4 days, I've just had this feeling. This "gut" feeling, if you want to call it that. The feeling is ... I just KNOW he's going to be okay. I know it. I feel it. I sense it. I see him, now. He looks at me and I can see him, and he smiles and I know that he's coming back. I told my husband 2 nights ago that I just know in my heart that he is going to be okay. That we are going to get him back and he's going to be OKAY.
So. We saw Dr. Rao today and he asked me how he was doing. I said "I'm cautiously optimistic because he's been doing great over the past few weeks." Holden was in the room, sitting on the floor, talking to himself. He looked up at Dr. Rao and Dr. Rao looked at him, and then Holden said "Hi". Then he started talking to himself. Dr. Rao pointed to him and said to me "THAT is an excellent sign." I said ... "what do you mean, what's an excellent sign?" And she said that the way he was talking to himself ... using consonant/vowel combinations, and singing to himself - that it was an excellent sign. He said that in the thousands of children he's seen, he's seen that many times in children who RECOVER. He said that the progress he's making and what I've described and what he sees himself ... that he feels he's beginning to finally heal the inflamation in his brain and beginning the healing/recovery process. He said that fortunately, there are those children who do begin to heal/recover and from his experience, they do not go backwards. They continue to progress over time. And, unfortunately, there are those kids who just never hit that point of beginning to heal/recover.
He said .... recovery. recover. heal.
I could've kissed the man!!!! And almost did.
We had a blood draw to check his liver function (because he's on daily anti-fungal medication, which can be unusually harsh on the liver), and we did an IV 'push' of glutathione - which is a natural anti-oxidant. Kids with autism have very low levels of glutathione.
Holden didn't cry once. Didn't scream, or fight me. He sat in my lap and said "no", but that was it. They sprayed him with a numbing spray and he just watched a movie and was the bravest little boy.
We're continuing the chelation every week. It's working. Something's working. Maybe it's the chelation. Maybe it's the ABA therapy at school. Maybe it's the many people praying for him. Maybe it's a combination of all of it? Either way, I'm not willing to stop any of it.
I know there will be days. I know he will regress. It happens. It needs to happen to heal his body further. And, I know there will be days when I'll send you "woe is me" messages and need a little extra support from anyone I can get it from. But, right now? Today? I'm going to just take it all in and I'm just soooo incredibly thankful that a doctor AGREES with me. He sees it, too. He's given me more hope and motivated me even more.
A doctor is giving me hope. Wow. What a great idea!!!
The appointment went well. I realized a LOT today. Remember a few weeks back (3/26, to be exact), when I sent you that message and I was just so down about things? That Holden was stimming nonstop and staying up late and regressing and I just couldn't figure out what was going on with him? What I was doing wrong, etc? Well. I have a friend in Orlando who's son went to the same ABA clinic as Holden. We became friends and have kept in touch and she told me a while back that her son would have these episodes of "regression", and then once it was over, he would always make these huge leaps in progress. She realized they were "healing regressions". That during chelation, his body was dumping metals and toxins into his blood stream and causing him to feel horrible (thus, the stimmy, not sleeping, irritability, etc...). And once he was able to rid his body of those loose metals/toxins, he would come out of it and make those great leaps and bounds in development. I understood what she was saying ... but didn't really understand, ya know? So, it hit me today. This is what happened with Holden. It has to be. It was HORRIBLE this last time around (the week of 3/22-3/27). I felt hopeless, helpless. But, in the past 2 weeks or so, I've seen some major improvements. Major. And, in the last 3-4 days, I've just had this feeling. This "gut" feeling, if you want to call it that. The feeling is ... I just KNOW he's going to be okay. I know it. I feel it. I sense it. I see him, now. He looks at me and I can see him, and he smiles and I know that he's coming back. I told my husband 2 nights ago that I just know in my heart that he is going to be okay. That we are going to get him back and he's going to be OKAY.
So. We saw Dr. Rao today and he asked me how he was doing. I said "I'm cautiously optimistic because he's been doing great over the past few weeks." Holden was in the room, sitting on the floor, talking to himself. He looked up at Dr. Rao and Dr. Rao looked at him, and then Holden said "Hi". Then he started talking to himself. Dr. Rao pointed to him and said to me "THAT is an excellent sign." I said ... "what do you mean, what's an excellent sign?" And she said that the way he was talking to himself ... using consonant/vowel combinations, and singing to himself - that it was an excellent sign. He said that in the thousands of children he's seen, he's seen that many times in children who RECOVER. He said that the progress he's making and what I've described and what he sees himself ... that he feels he's beginning to finally heal the inflamation in his brain and beginning the healing/recovery process. He said that fortunately, there are those children who do begin to heal/recover and from his experience, they do not go backwards. They continue to progress over time. And, unfortunately, there are those kids who just never hit that point of beginning to heal/recover.
He said .... recovery. recover. heal.
I could've kissed the man!!!! And almost did.
We had a blood draw to check his liver function (because he's on daily anti-fungal medication, which can be unusually harsh on the liver), and we did an IV 'push' of glutathione - which is a natural anti-oxidant. Kids with autism have very low levels of glutathione.
Holden didn't cry once. Didn't scream, or fight me. He sat in my lap and said "no", but that was it. They sprayed him with a numbing spray and he just watched a movie and was the bravest little boy.
We're continuing the chelation every week. It's working. Something's working. Maybe it's the chelation. Maybe it's the ABA therapy at school. Maybe it's the many people praying for him. Maybe it's a combination of all of it? Either way, I'm not willing to stop any of it.
I know there will be days. I know he will regress. It happens. It needs to happen to heal his body further. And, I know there will be days when I'll send you "woe is me" messages and need a little extra support from anyone I can get it from. But, right now? Today? I'm going to just take it all in and I'm just soooo incredibly thankful that a doctor AGREES with me. He sees it, too. He's given me more hope and motivated me even more.
A doctor is giving me hope. Wow. What a great idea!!!
4.14.2009
playing
I've noticed over the past week that Holden's been playing more appropriately. He and Jackson have been running around the house, chasing each other. For ex, this morning while I'm running around like a crazy person, trying to get 3 kids dressed and 2 of them off to school...I look over and the boys are on the couch. Not sitting, but standing. So I tell Jackson to sit down and he does. Then Holden looks at him and smiles and sits. Then stands, looks at Jackson and Jackson grins and stands. Up and down and up and down. But, the point is that he was LOOKING at Jackson. Interacting with him. Yesterday after school, I noticed Holden chasing Bella (our dog) around and laughing. Then, Bella was on the couch next to me (wanting protection from me, obviously) and Holden grabbed her and tried to "hug" her. Course, Bella's afraid she'll get broken, so she got away from him. I think we need a dog that will play back! 2 nights ago, I put a blanket on the floor in our room, which is where Holden typically falls asleep at night, with one of the music channels on TV. Jackson was in there with him and the next thing I know, I hear Jackson crying. So, I go in to investigate and Holden's laying on top of him...smiling and laughing. Poor Jackson was crying! I realized that Holden was just playing with him. Dietrich lays across Holden sometimes because he loves deep pressure. I guess Holden thought Jackson should learn to love it too. Ha. I'm scared to be so optimistic, because I know there will be more regression. It comes with the journey. But right now, I'm just enjoying him being a little boy and playing with his brother! And laughing! Here's a video of some laughing and interacting:
4.10.2009
Four
Holden turned 4 today. Wow, I still can't believe it. 2 years ago, this week, we received the diagnosis of PDD-NOS (autism). I remember it like yesterday. I wrote a whole post about remembering that week, and the weeks prior - when we realized what was going on with him. But, I decided to delete it. I won't focus on the past anymore, but rather look forward to the future. So, this is going to be a post about positive things! About how far he's come and how far he WILL go.
I was thinking this morning, after I gave Holden a cupcake (GFCF, of course) for breakfast that I honestly could not remember his 3rd birthday. I know, I know, it's horrible. But, it's true. I remember thinking when he turned 3 that I had no idea who my son was. I didn't know his likes, or dislikes. I don't know if I even bought him a gift - although, I suspect I did. I just can't remember what it was, or if he liked it. He was so incredibly lost just 1 year ago. I think I spent most of his 3rd birthday crying, to be honest.
About a week leading up to this birthday, I started having a bit of panic. I didn't want another birthday to go by and him not understand. Or, for me not to know what to do to make his day "special". I decided to just go with it and I planned a little birthday celebration with his class at school and his teacher was all for it. So, yesterday I took in cupcakes and a few goodies for his classmates (who are also all autistic) and Jackson and I went in to celebrate with him at school. His teachers were there and also his speech therapist. I remember she said to me "everyone loves Holden here - he's such a special little boy!" And I honestly felt like she meant it. Holden LOVED everyone singing Happy Birthday to him. He even tried to sing along, and got the biggest smile when we all clapped afterwards. It was almost as if he realized ... HEY, this is for me!! Afterwards, they had planned an egg hunt and I thought to myself ... this should be fun. I'm sure he won't "get it". I know, optimistic of me, huh?! But, we went outside and I showed him an egg on the ground and told him to pick it up and put it in his bag. He did! And then, he looked around and saw more. He picked up the rest all on his own and had so much fun doing it. I was so proud of him.
This morning, he had cupcakes for breakfast. He got a tricycle-type bike to ride and loved it. I think he really loved the noises, lights, and all the buttons, but still - he liked it! He and Jackson PLAYED this morning, too. They were chasing each other and although it only lasted for about 5 minutes ... they played. Together. And they were both laughing. Together. We then took him to lunch at a Gluten-free restaurant. He actually ate the food, which surprised me. He's a bit picky, or so I thought. But, apparently I was wrong, he tried a few things and seemed to not have any trouble with it! Then, we all had yet another cupcake to celebrate his day.
Then, off to the Wiggly Play Center. I was a little concerned about taking him there, too. Would the other kids freak him out? Would the noise bother him? Would he just do "stimmy walks" around the place and touch the walls? The last time we took him to a place like this, he had absolutely NO interest. That was about 8 months ago. Well, I'm happy to report he loved it! He had a blast (and so did Jackson). He didn't play with other kids, but then again, none of the other kids were playing with other kids either! He went through all the tunnels, bouncy houses, and slides. We bought him a Wiggles hat and shirt and left for home.
He was beat after today. He's now in bed, sleeping like a baby...but, a baby who just turned 4. Some words and phrases I heard from him today:
"Jackson, NO!"
"Happy birthday"
"Wiggles"
"Cake!"
"More cards" (for his language builder cards)
"pee pee in the potty"
"I love you"
There were probably more, and I just realized while typing this that I don't know if I can even keep count of his words and phrases anymore! Which is soooo exciting. This time last year, I didn't know if he would ever say a word, to be honest. Although, most people can't understand what he's saying ... I can. And I know he's talking and I know he's trying to say more. I also know what he likes. He loves the Wiggles, Little Einsteins, his language builder cards, balls, slides, his new trike, beads, puzzles, being outside, hugs, kisses, tickles...and the list goes on. I know my kid. I know who he is now, and although it's taken 2 long years to get to this point, it's so worth it now.
He has come so far in the past year and I am so very proud of him. I know he works incredibly hard, for such simple things that come easily to other 4 year olds. I also know that the next year will bring many more UPs...and also a few downs. But, I am committed to his recovery and I will not let him down. We're healing his body, one day at at time.
So, happy birthday beautiful boy! We love you more than words can say. A few pictures from his special (2) days!
I was thinking this morning, after I gave Holden a cupcake (GFCF, of course) for breakfast that I honestly could not remember his 3rd birthday. I know, I know, it's horrible. But, it's true. I remember thinking when he turned 3 that I had no idea who my son was. I didn't know his likes, or dislikes. I don't know if I even bought him a gift - although, I suspect I did. I just can't remember what it was, or if he liked it. He was so incredibly lost just 1 year ago. I think I spent most of his 3rd birthday crying, to be honest.
About a week leading up to this birthday, I started having a bit of panic. I didn't want another birthday to go by and him not understand. Or, for me not to know what to do to make his day "special". I decided to just go with it and I planned a little birthday celebration with his class at school and his teacher was all for it. So, yesterday I took in cupcakes and a few goodies for his classmates (who are also all autistic) and Jackson and I went in to celebrate with him at school. His teachers were there and also his speech therapist. I remember she said to me "everyone loves Holden here - he's such a special little boy!" And I honestly felt like she meant it. Holden LOVED everyone singing Happy Birthday to him. He even tried to sing along, and got the biggest smile when we all clapped afterwards. It was almost as if he realized ... HEY, this is for me!! Afterwards, they had planned an egg hunt and I thought to myself ... this should be fun. I'm sure he won't "get it". I know, optimistic of me, huh?! But, we went outside and I showed him an egg on the ground and told him to pick it up and put it in his bag. He did! And then, he looked around and saw more. He picked up the rest all on his own and had so much fun doing it. I was so proud of him.
This morning, he had cupcakes for breakfast. He got a tricycle-type bike to ride and loved it. I think he really loved the noises, lights, and all the buttons, but still - he liked it! He and Jackson PLAYED this morning, too. They were chasing each other and although it only lasted for about 5 minutes ... they played. Together. And they were both laughing. Together. We then took him to lunch at a Gluten-free restaurant. He actually ate the food, which surprised me. He's a bit picky, or so I thought. But, apparently I was wrong, he tried a few things and seemed to not have any trouble with it! Then, we all had yet another cupcake to celebrate his day.
Then, off to the Wiggly Play Center. I was a little concerned about taking him there, too. Would the other kids freak him out? Would the noise bother him? Would he just do "stimmy walks" around the place and touch the walls? The last time we took him to a place like this, he had absolutely NO interest. That was about 8 months ago. Well, I'm happy to report he loved it! He had a blast (and so did Jackson). He didn't play with other kids, but then again, none of the other kids were playing with other kids either! He went through all the tunnels, bouncy houses, and slides. We bought him a Wiggles hat and shirt and left for home.
He was beat after today. He's now in bed, sleeping like a baby...but, a baby who just turned 4. Some words and phrases I heard from him today:
"Jackson, NO!"
"Happy birthday"
"Wiggles"
"Cake!"
"More cards" (for his language builder cards)
"pee pee in the potty"
"I love you"
There were probably more, and I just realized while typing this that I don't know if I can even keep count of his words and phrases anymore! Which is soooo exciting. This time last year, I didn't know if he would ever say a word, to be honest. Although, most people can't understand what he's saying ... I can. And I know he's talking and I know he's trying to say more. I also know what he likes. He loves the Wiggles, Little Einsteins, his language builder cards, balls, slides, his new trike, beads, puzzles, being outside, hugs, kisses, tickles...and the list goes on. I know my kid. I know who he is now, and although it's taken 2 long years to get to this point, it's so worth it now.
He has come so far in the past year and I am so very proud of him. I know he works incredibly hard, for such simple things that come easily to other 4 year olds. I also know that the next year will bring many more UPs...and also a few downs. But, I am committed to his recovery and I will not let him down. We're healing his body, one day at at time.
So, happy birthday beautiful boy! We love you more than words can say. A few pictures from his special (2) days!
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