I started this blog to keep a running log of how Jaden's and Brinn's therapies evolve and the results we see so that family can be updated and so that other parents with autistic kids can see what I'm doing. But when ever I get a good 30 minutes to myself the last thing I want to do is post on my blog. But here is what has happened in the last few months.
...
After we paid our last dues and waited out our last hours in the HBOT I hastily removed the chamber from my parents dinning room and returned it. It is hard to tell if it helped the kids or not because, yes, they did make progress in their speech, communication, and social skills but was it because of the HBOT, time, ABA, RDI, biomedical treatments, B12 shots, or listening therapy. Who knows? but who is willing to leave out any treatment that COULD help. No one wants their kid to be the placebo in any treatment study because what if it does work.
As for instructors, I was having an instructor leave for an internship she wanted to do and about the same time we received a referral from a friend about a girl who worked at Pingree, an autism school, for two years and had to quit because she had two herniated discs because of two different incidences with older autistic kids. She wanted to work with autistic kids but with younger children and one at a time. She was perfect she hit it right off with Jaden and he loved her. But sadly after one month she was house sitting and was walking one of their huge dogs and she blew out her back. So she had to quit. So for a few weeks I was understaffed and had two instructors tell me they needed less hours. So for a couple of weeks I was doing 21 hours with Jaden, 3 hours of meetings, and 5-10 hours of Brinn's therapy and also preschool on top. Remember also I have to make all meals from scratch.
I hired a girl and she told be she wanted the job and was eager to start. But on the first day I was training her Jaden was having a tough day. So promptly the next day she emailed me to tell me she didn't want the job. So I was back to hiring. So I sent out ads, did about 7 interviews, weeded out the flaky and not-so-interested, and hired two applicants I am so far very pleased with. Let me tell you it sounds easier said than done to keep the ABA program going.
Jaden's still potty training. He has good weeks and bad weeks. We've transitioned him to standing and putting Cheerios or fruit loops in the toilet to make it fun. So far he has seem to be amused and has been staying dry. But it is always a daily battle.
We have started Jaden on a sight reading program and will introduce a phonics program shortly, as he has picked up the phonics rules on his own. He can now read over 200 words and acquires 2-4 new words daily. This is amazing to me considering he couldn't talk a year ago.
Jaden is now on a new diet. Yes, this poor kid has been on more diets than the average adult American. He can now have a few more foods but also more have been eliminated from his diet. Even though we were doing the Special Carbohydrate Diet for Jaden his BM were still mushy and fowl smelling (sorry about the details but this is all we talk about in the biomedical Dr. office). So we had blood taken and an allergy test done and sure enough Jaden had allergic tendencies to nuts (almond flour is the staple to the SCD diet), apples, grapes, chicken, eggs, celery, wheat, oats, and many many more items I'm not going to list. So basically everything he was eating was irritating his gut and intestines causing a leaky gut. So we changed his diet (still no sugar, gluten, casein and allergy inducing foods) while giving him aloe juice and chamomile tea, and a bunch of new supplements. His BMs became normal for the first time in months and then we started the antibiotics and the anti fungals. Jaden was a sweet little boy for a few weeks then after two weeks when we were done with the anti fungals his aggression and sensitivity started to return so we are going to have to put him on some natural anti fungals (garlic...).
During all this, the biomedical Dr. I was seeing left the practice and so I am now seeing the Dr. who started the practice. I personally like him better.
So Jaden can now eat potatoes, corn, and rice which has been great. But he has to eat organic and fresh vegetables. Cooking has taken up a major amount of my time and money now too.
Brinn is doing well. We just finished our second RDA with her and boy was it interesting. I thought it went okay (Brinn had some moments). But when we had our review we were basically told that we let the inmates run the prison. So Jason and I will be working on that ...or I will be working on that because Jason has been at work a lot...even on Saturdays. Poor Jason.
Brinn can now count to 10 in three different languages and we are working on having her count to 20 in English, Spanish, and German. She gets all her practice as she is on 'time out'... and she is on 'time out' a lot.
Brinn is very social and at times she seems like a normal neural typical child but she still has some communication skills we are working on. My current homework is to catch her on camera thinking when she has encountered something unexpected, which has been tough. Also, I'm supposed to record some referencing communication which won't be too bad. The third clip I'm suppose to tape is Brinn's response to setting limits in our activities (such as a space limit) and see how she responds. She will most likely respond with a tantrum but we have to just let her tantrum while we still enforce the space limit without any talking. Then if she calms down we then reintroduce our activity. Needless to say the house is not without a lot a screaming.
Sunday, June 27, 2010
Wednesday, March 3, 2010
Sunday, January 31, 2010
Trying to make a Mole Hill out of a Mountain
So every time I have to go see my DAN Dr. I have to take a deep breath, ask him to write everything down that he says to me so I can read it later, and then go into a wide-eyed trance so the Dr. can't see the shock of the next overwhelming task at hand.
After the appointments, I usually get a caffeinated drink and a chocolate bar with some gooey caramel center and then carefully read the prescribed treatments and try and digest what I heard earlier.
Today the chocolate and drink didn't help. I got home and collapse at what was strongly suggested for Jaden and Brinn. If only there were more hours in the day to do all these things...
Brinn may have to go on the antibiotic and anti fungal treatments that Jaden is on and Jaden will have to stay on his anti-fungal for the next 6 months to regulate his "gut". Remember anti-fungals 4 times a day along with pro-biotics 2 times a day all at different times ...along with the usual supplements.
At this appointment Jaden's gut was pretty good-not much bloating. Brinn has diarrhea so that indicated bacteria, yeast, or a viral infection so we have to wait a week and see what happens. But if it is the first two we'll have to do the antibiotics and anti-fungals as mentioned before.
After the appointments, I usually get a caffeinated drink and a chocolate bar with some gooey caramel center and then carefully read the prescribed treatments and try and digest what I heard earlier.
Today the chocolate and drink didn't help. I got home and collapse at what was strongly suggested for Jaden and Brinn. If only there were more hours in the day to do all these things...
Brinn may have to go on the antibiotic and anti fungal treatments that Jaden is on and Jaden will have to stay on his anti-fungal for the next 6 months to regulate his "gut". Remember anti-fungals 4 times a day along with pro-biotics 2 times a day all at different times ...along with the usual supplements.
At this appointment Jaden's gut was pretty good-not much bloating. Brinn has diarrhea so that indicated bacteria, yeast, or a viral infection so we have to wait a week and see what happens. But if it is the first two we'll have to do the antibiotics and anti-fungals as mentioned before.
We also went over Brinn's metal lab that was sent to Paris the previous month. Apparently, all we have to do is look into Brinn's eyes to tell what temperature it is with all the mercury that is in her little system. Okay, maybe it isn't that bad but it is high-along with some other toxins that the results showed. So for the next four to five weeks Brinn will be on Enhansa (Enhanced Absorption Curcumin Supplement) that gets increasingly stronger each week to help her detox from all the toxins. She will have to take the stuff two times a day. Just add it to the list.
But on top of all that the Dr. strongly suggested we started HBOT treatments. My first question was ...What?! I had no idea what it was. So the Dr. showed me the chamber they had there and explained what it does. So it logically seems like the next step.
But to explain the cheapest way we can do this is to rent one for two and a half months and each month costs the same as our old mortgage payment. The kids are supposed to get 80-100 hours in the chamber for it have the greatest affect.
Besides using up all our money I'm suppose to put both the kids maybe along with myself in this chamber one hour at a time, two times a day, five days a week...for the next two and a half months. But remember on top of that, supplements and medications 6 times a day, listening therapy 1/2 hour a day for each kid, 6-9 hours of ABA a day for Jaden, 2 hours RDI for Brinn, and I need to find time to make ketchup, bread, spaghetti squash, and prepare gluten and casein free and SCD diet meals.
Oh, and to top off my heaping plate...I will have to start giving Jaden B 12 shots in four weeks. I don't have problems getting shots, but I have never given anyone an injection and I get to start it on my little boy... I'm terrified. I'm sure once I've done it a couple times it will be no big deal but the thought of it is a little intimidating right now.
...and so is everything else.
Hum...If only we didn't have to sleep. Is there enough caffeine in the world?
But on top of all that the Dr. strongly suggested we started HBOT treatments. My first question was ...What?! I had no idea what it was. So the Dr. showed me the chamber they had there and explained what it does. So it logically seems like the next step.
But to explain the cheapest way we can do this is to rent one for two and a half months and each month costs the same as our old mortgage payment. The kids are supposed to get 80-100 hours in the chamber for it have the greatest affect.
Besides using up all our money I'm suppose to put both the kids maybe along with myself in this chamber one hour at a time, two times a day, five days a week...for the next two and a half months. But remember on top of that, supplements and medications 6 times a day, listening therapy 1/2 hour a day for each kid, 6-9 hours of ABA a day for Jaden, 2 hours RDI for Brinn, and I need to find time to make ketchup, bread, spaghetti squash, and prepare gluten and casein free and SCD diet meals.
Oh, and to top off my heaping plate...I will have to start giving Jaden B 12 shots in four weeks. I don't have problems getting shots, but I have never given anyone an injection and I get to start it on my little boy... I'm terrified. I'm sure once I've done it a couple times it will be no big deal but the thought of it is a little intimidating right now.
...and so is everything else.
Hum...If only we didn't have to sleep. Is there enough caffeine in the world?
Wednesday, January 27, 2010
College students, Drugs & Paris....what an adventure!
Where to begin...So much has happened but non of it truly interesting or noteworthy...it is only blog worthy.
So I finished retraining my instructors the first week of December and installed a one-way mirror (which has been a blessing).
Luckily, my instructor with sleeping problems had to leave to do a study abroad and I was again hiring. Within five days I received 31 resumes from a nearby University. I easily found my top 3 and hired a girl who has done 2 years of ABA, worked at Spectrum (A charter school for autistic kids in North Salt Lake), and is currently running a private program for another client (consisting of floor play and RDI), as she has two consultant friends she keeps in contact with who help her. I was thrilled that I didn't have to train her and she is amazing!!! I asked her if she has had previous experience with big (okay I mean violent) tantrums. As soon as she told me that she had her wrist sprained by a boy she worked with, I hired her. That was experience enough for Jaden.
In weeding out the resumes I had a couple of chuckles. One freshman professed to have an intense interest in helping autistic children because they were angels here on earth. And someone else in their cover page noted that they thought autistic kids were sweet spirited. I laughed because they obviously don't have any experience with (most) autistic children (or an autistic child like Jaden). I'm not saying that Jaden isn't sweet or that he isn't one of God's angels here on earth. Deep down I believe those things. But when you are making an autistic boy do something that he blatantly doesn't want to do for 6-9 hours a day that angel can turn into a demon (but I still love him). These applicants would be caught off guard.
I interviewed 7 of the top resumes I got. I wanted to make sure this person wouldn't be burned out in two months. I was surprised of the lack of knowledge that these applicants professed to have. One said she first got an interest in special education because she had come across a few mentally handicapped people while living away from home for two years. She then told me there was one young girl who must not of had autism because she was always throwing tantrums.....Hum.
One told me that she thought autistic kids were the easiest to watch because they would just sit for hours playing with their obsessed toy. So I asked her, "What do you think those kids would do if you pulled them away from their toys and made them do something they didn't want to do for 6-9 hours a day?" I think I made her realize a bit of what she might have faced...she was speechless.
Doing this interview process there is one thing that I loved while interviewing. I loved when someone had questions. I usually only got questions from people who had experience and when they did ask their questions it always professed their true interest in the job. Money=yes, $ is important today but they may get burned out. Questions about the ABA Program=they seem to want to know more about what we are doing with this program and have some background knowledge or did some research.
So in the hiring process we lucked out this time.
Just before Christmas we went back to our DAN Dr. and we learned that we had to do another round of antibiotics and anti fungals. Jaden's belly was still bloated. Where is the yeast and dairy coming from? Some how he got some "No No" foods (sugar, grains, dairy, yeast) in his system- It might have been from breathing. So now we are back with taking the antibiotics three times a day for a week and this time we are doing anti fungals four times a day along with probiotics two times a day and they can't be taken the same time as the anti fungal, and we have to do this for 30 days. So six times a day for 30 days poor Jaden is taking supplements and meds. Poor boy.
Brinn had to have another urine sample taken for a metal lab. But this sample was shipped off to Paris to by analysed. Boy, I wished I could have accompanied the pee. Who would have known that the French were experts in wee wee?
So I finished retraining my instructors the first week of December and installed a one-way mirror (which has been a blessing).
Luckily, my instructor with sleeping problems had to leave to do a study abroad and I was again hiring. Within five days I received 31 resumes from a nearby University. I easily found my top 3 and hired a girl who has done 2 years of ABA, worked at Spectrum (A charter school for autistic kids in North Salt Lake), and is currently running a private program for another client (consisting of floor play and RDI), as she has two consultant friends she keeps in contact with who help her. I was thrilled that I didn't have to train her and she is amazing!!! I asked her if she has had previous experience with big (okay I mean violent) tantrums. As soon as she told me that she had her wrist sprained by a boy she worked with, I hired her. That was experience enough for Jaden.
In weeding out the resumes I had a couple of chuckles. One freshman professed to have an intense interest in helping autistic children because they were angels here on earth. And someone else in their cover page noted that they thought autistic kids were sweet spirited. I laughed because they obviously don't have any experience with (most) autistic children (or an autistic child like Jaden). I'm not saying that Jaden isn't sweet or that he isn't one of God's angels here on earth. Deep down I believe those things. But when you are making an autistic boy do something that he blatantly doesn't want to do for 6-9 hours a day that angel can turn into a demon (but I still love him). These applicants would be caught off guard.
I interviewed 7 of the top resumes I got. I wanted to make sure this person wouldn't be burned out in two months. I was surprised of the lack of knowledge that these applicants professed to have. One said she first got an interest in special education because she had come across a few mentally handicapped people while living away from home for two years. She then told me there was one young girl who must not of had autism because she was always throwing tantrums.....Hum.
One told me that she thought autistic kids were the easiest to watch because they would just sit for hours playing with their obsessed toy. So I asked her, "What do you think those kids would do if you pulled them away from their toys and made them do something they didn't want to do for 6-9 hours a day?" I think I made her realize a bit of what she might have faced...she was speechless.
Doing this interview process there is one thing that I loved while interviewing. I loved when someone had questions. I usually only got questions from people who had experience and when they did ask their questions it always professed their true interest in the job. Money=yes, $ is important today but they may get burned out. Questions about the ABA Program=they seem to want to know more about what we are doing with this program and have some background knowledge or did some research.
So in the hiring process we lucked out this time.
Just before Christmas we went back to our DAN Dr. and we learned that we had to do another round of antibiotics and anti fungals. Jaden's belly was still bloated. Where is the yeast and dairy coming from? Some how he got some "No No" foods (sugar, grains, dairy, yeast) in his system- It might have been from breathing. So now we are back with taking the antibiotics three times a day for a week and this time we are doing anti fungals four times a day along with probiotics two times a day and they can't be taken the same time as the anti fungal, and we have to do this for 30 days. So six times a day for 30 days poor Jaden is taking supplements and meds. Poor boy.
Brinn had to have another urine sample taken for a metal lab. But this sample was shipped off to Paris to by analysed. Boy, I wished I could have accompanied the pee. Who would have known that the French were experts in wee wee?
So, I finally received Brinn's lab results back by email (which was nice) but they forgot to translate-from Doogie Howser M.D. to Jenny Rogers G.E.D. It was very frustrating. So I guess I'll have to pay my Dr. translator a visit to see what is going on and what potions to further give my little Brinn.
ABA has been moving pretty smoothly along except for one problem...Mr. Hyde (or Mr. Jayde). Jaden has been very good with hitting...he has a very good aim. We still haven't gotten Jaden's outbursts under control (hitting, kicking, pulling hair, throwing toys and furniture) they have gotten a little worst as his upper body strength has increased. He went from throwing chairs to tables. Jaden is actually a very sweet little boy who tells you he loves you "miss much" and freely gives hugs and kisses...after his apology (he does it other times too :) ) But when he gets frustrated or disappointed he turns from cute, sweet, Dr. Jaden to Mr. Jayde. So our consultant will be doing a couple sessions with him after he watches a video I'll put together of several sessions where he has been awful.
We'll figure it out....I hope.
I love my babies but I can look no further than today...that is how I survive.
...Oh, and chocolate
ABA has been moving pretty smoothly along except for one problem...Mr. Hyde (or Mr. Jayde). Jaden has been very good with hitting...he has a very good aim. We still haven't gotten Jaden's outbursts under control (hitting, kicking, pulling hair, throwing toys and furniture) they have gotten a little worst as his upper body strength has increased. He went from throwing chairs to tables. Jaden is actually a very sweet little boy who tells you he loves you "miss much" and freely gives hugs and kisses...after his apology (he does it other times too :) ) But when he gets frustrated or disappointed he turns from cute, sweet, Dr. Jaden to Mr. Jayde. So our consultant will be doing a couple sessions with him after he watches a video I'll put together of several sessions where he has been awful.
We'll figure it out....I hope.
I love my babies but I can look no further than today...that is how I survive.
...Oh, and chocolate
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