Click on the title (seriously???) for the link to the CNN video:
FINALLY, something in the news to create some sort of "panic" among the CDC. Course, we'll have to wait and see what they do about it. I'm thinking they'll wait until these numbers double, or even triple, before they choose to really do something about it. Because, doing something about it ... means they will have to look at even more possible causes of autism. Environmental factors, overloading a child's system with too many vaccines too soon...and we all know the CDC and AAP will never allow that to happen.
Instead, they'll excuse it away. "Better diagnosis", "more awareness", "doctors are more willing to diagnose a child with autism today". We've heard it all, and will continue to hear it all until we all stand up and keep asking questions and making a 'stink' about these crazy numbers!
Mr. President - YES, we DO have a healthcare crisis in this country. We have an epidemic. It's caused AUTISM. 1 in 91 children. 1 in 58 boys. And as these numbers continue to GROW at an alarming rate? We can expect even more than 1 in 58 ADULTS with autism in our future. We haven't seen anything yet ......
10.05.2009
9.16.2009
Doctor's Visit
Yesterday we saw our DAN doctor for the first time since May. Appointments had to be cancelled and rescheduled, etc...so, it's been a while. The doctor said "he has a lot of potential, and great emerging skills, but we also need to become more aggressive in his treatment because he's 4 and a half now." We're going to do an IV on Friday. EDTA + DMPS challenge test. Then 2 weeks later, another challenge test with suppositories (EDTA+DMPS). In the meantime, we'll also check his urine for yeast.
But,
That statement - the one about him being 4.5 now? Hit me like a ton of bricks. I can't get it out of my mind. He's FOUR AND A HALF. Almost 5. 2 and a half years ago, I thought that by now, he would at the very least...be talking. As in, having a conversation with me. He's not.
He's made progress, yes. And I'm very thankful for that. But, today? I'm hanging onto hope by a thread. And all the smaller threads that make up that 1 thread - peeling away 1 by 1. So, in reality, I'm hanging on to hope by less than a thread.
But,
That statement - the one about him being 4.5 now? Hit me like a ton of bricks. I can't get it out of my mind. He's FOUR AND A HALF. Almost 5. 2 and a half years ago, I thought that by now, he would at the very least...be talking. As in, having a conversation with me. He's not.
He's made progress, yes. And I'm very thankful for that. But, today? I'm hanging onto hope by a thread. And all the smaller threads that make up that 1 thread - peeling away 1 by 1. So, in reality, I'm hanging on to hope by less than a thread.
7.29.2009
Proof.
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!
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!
7.23.2009
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)
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