So lots has happened and I don't want to post it all. Four instructors later a lot of ups and down ( I think more downs) and that is where you'd find me. I have some good instructors now working for me in Jaden's program that I feel confident with where the program is going. Jaden, on the other hand, I'm not confident on where he is going. His behavior has been the most terrifying roller coaster ride I've been on. There are some ups but there are a Heck of a lot of steep downs. Yes, he's almost potty (not poopy) trained, and is reading, and more able to make complete sentences that express good thoughts but.... I say but... He is stimming like never before and he echos physically and verbally so much that I feel like I have a paid mime following me everywhere. He licks things, he smells things, his OCD is off the charts. Every door, drawer, compartment have to be closed; drops of water wiped up; rugs and pictures places straight. Where did this OCD Mime come from?!
His behavior took a bad turn about 2 months ago ( more violent and endless screaming) we think after he ate some Swedish Fish (for potty training), which is full of no, no red dye. Then another diet was suggested and I started it promptly as soon as I could. The Diet is called the GAPS Diet. It is the SCD diet on steroids. I had to make friends with a rancher and a butcher and spend that much more money at whole foods to get it going. So 1/4 of a cow later and a bunch of bone marrow the diet is going full steam. Yes, we have seen improvement in his violent behavior but like I said I'm dealing with this new creature. So I'm going back to the intro diet of GAPS diet to see if that will help with the strange behaviors.
As for school, he got the Okay to attend mainstream Kindergarten but I may have to hire a shadow for him. Which is fine. I didn't want him going to a special ed kindergarten because he is so far ahead of his peers academically that he might tank in a limited environment.
As for Brinn, at first the school district said she didn't qualify for any special services. This made me upset because I could ask Brinn how old she is and she would reply "Old. or Brinn Rogers." Um, I don't think so. So with help from a parent advocate with the school district and a few phone calls later the district head of preschool and kindergarten allowed Brinn further testing. And of course Brinn was allowed into the special ed preschool and get an IEP (Individualized Education Plan). Thank goodness. But she is my super star. Yes, we have work to do but I don't stress about her future as I do for Jaden. Lately, I'm in tears every night worrying about these new strange behaviors and the lack of progress in certain areas (potty training).
Poor Brinn hasn't been getting as much attention as I give to Jaden. It is always last minute that I get my RDI homework done and it is because she learns quickly on her own that she is progressing quickly.
So my schedule basically consists of ABA, RDI, and cooking like they did 100 years ago. I can't use a microwave. Yeah, chew on that. Everything has to be fresh, frozen, free range, pasture-grass fed, and named Bessie.
I do have to say, that it was funny when I bought the cow, I received a picture of the cow. It brought a sick smile to my face as how they thought it might be appealing to see what your cow looked like before it met my friend The Butcher.
I've been doing this for almost two years now and I'm starting to get that burnt out feeling where despair starts to creep in a little more often. I told Jason the perfect break from this would be a long road trip to the coast with music blaring and me screaming/singing to the music at the top of my lungs until I arrive at a sandy beach with warm sun. ...Maybe Someday.
So this is what is going on right now. I just try to make it a day at a time. I'm not going to picture Jaden being 16 and having the same tantrum he had earlier today at the store....that terrifies me. I may have to take up weight training.
Thursday, February 24, 2011
Sunday, June 27, 2010
Diets, Riots, and not a whole lot of Time
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.
...
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.
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
Friday, November 27, 2009
Maddness, Maddness, Maddness...! and a little laziness
Okay, things have been crazy here. So once we sold the home and started RDI and a more intensive listening therapy, we spent some more money on seeing a biomedical DAN doctor for both Brinn and Jaden. This has been very expensive--yet, informative.
Both had blood drawn and urine taken (also good stories) and the results came back with Jaden having a high level of yeast and bad bacteria in his GI track and stomach. He also had other problems with mitochondria function that will be issued later and has an immune deficiency. Because of the yeast and bacteria Jaden went on an antibiotic for a week and then for the following 2 weeks he went on an anti fungal. Jaden had about 8 or 9 supplements each day and some had to be taken at certain times of the day and some that couldn't be taken at the same time as others. Talk about a real life logic puzzle. Oh, and on top of that we had to put Jaden on a SCD (Specific Carbohydrate Diet). If any of you know what that is then you may have some idea as to the hardship Jaden and I are going through.
Brinn's results came back with a little more relief. Her yeast and bacteria levels came back normal so she didn't have to go on the SCD diet, but she still can't eat gluten or casein. But Brinn does have a mitochondria problem and can't make energy out of fatty acids so she is taking supplements that will help with that along with some supplements for her immune deficiency. She is actually on more supplements than Jaden which boggles my mind.
So just to paint a brief picture of my day I have to make different meals for each of the kids and make sure each of them gets their 8 0r 9 supplements at the right time of day. Then they both have 30 mins of listening therapy on top of Jadens 6-9 hours of ABA therapy a day and Brinn's 2 hours of RDI. They both have preschool 2 days a week and Brinn's school is 25 mins away where she also has therapy one day a week too.
Also, to add to the list, I have to make Jaden's ketchup, mayo, candy, bread, yogurt, and muffins because he can't have any sugar...I mean any. The only sweet things he can have is honey and certain fruits. He also can't have any complex carbs which means no grains...wheat, rice, corn, lentils, oats, nothing...only dirt. So his bread and muffins are made of almond flour (ground up almonds) it is about $10 for 3 cups. Also, it takes three days to make a loaf of bread because you need drained, home-made yogurt to make the bread.
So yes, my life is a little crazy and time and money are very scare and hard to spare. At one point I was encourage by Jason to make a 3 day visit to New York to see a good friend because I was going a little batty. So I used some frequent flyer points to get free tickets to New York and spent three days knitting, eating, and laughing with my friend Natasha. It was the was the best recharge I could ask for. Thanks Jason and Natasha.
So now I'm back and trying to pick up where I left off. But it didn't help that when in New York I started to watch Jaden's ABA sessions I recorded just before I left and seeing some of my instructors doing very unprofessional behavior. You would think that with a camera recording everything you do during a session you might be more aware of what you do. I found one of my instructors would just sit there for a good length of time just watching Jaden playing. Then they would take 10-15 min naps while Jaden colored on the walls or made huge messes. I saw the instructor waking up, wiping their mouth and seeing Jaden's mess and saying "oh, crap!" My thought was "oh crap is right!"
I started crying when I saw this and some of the other instructor's behavior and sessions. Some sessions only had 1 trial!!! No Reinforcement. I cried not just because I was wasting my money but because Jaden, who never sees the light of day, is stuck in this room doing nothing while my instructor sleeps or just sits there texting friends and talking on the phone. This poor boy's life is not easy and they only make it harder for him.
Needless to say, I sent a very stern email out and I am holding a future mandatory meeting to re-train these instructors. I received many apologetic responses and I was pleased to hear them recommit to to promise they made when I gave them this job.
I will be making some changes though to help enforce their commitment to Jaden. I'm going to install a one-way-mirror on the door and NO cell phones are allowed in the therapy room. Also, they will be watching and critiquing sessions recorded of each other and of themselves periodically. I hope this will help.
But Jaden (despite the subpar instructors) and Brinn have both made great progress. It is amazing what you would do for your own kids that you would never do for yourself because of the work.
I just hope that God will bless my efforts.
Both had blood drawn and urine taken (also good stories) and the results came back with Jaden having a high level of yeast and bad bacteria in his GI track and stomach. He also had other problems with mitochondria function that will be issued later and has an immune deficiency. Because of the yeast and bacteria Jaden went on an antibiotic for a week and then for the following 2 weeks he went on an anti fungal. Jaden had about 8 or 9 supplements each day and some had to be taken at certain times of the day and some that couldn't be taken at the same time as others. Talk about a real life logic puzzle. Oh, and on top of that we had to put Jaden on a SCD (Specific Carbohydrate Diet). If any of you know what that is then you may have some idea as to the hardship Jaden and I are going through.
Brinn's results came back with a little more relief. Her yeast and bacteria levels came back normal so she didn't have to go on the SCD diet, but she still can't eat gluten or casein. But Brinn does have a mitochondria problem and can't make energy out of fatty acids so she is taking supplements that will help with that along with some supplements for her immune deficiency. She is actually on more supplements than Jaden which boggles my mind.
So just to paint a brief picture of my day I have to make different meals for each of the kids and make sure each of them gets their 8 0r 9 supplements at the right time of day. Then they both have 30 mins of listening therapy on top of Jadens 6-9 hours of ABA therapy a day and Brinn's 2 hours of RDI. They both have preschool 2 days a week and Brinn's school is 25 mins away where she also has therapy one day a week too.
Also, to add to the list, I have to make Jaden's ketchup, mayo, candy, bread, yogurt, and muffins because he can't have any sugar...I mean any. The only sweet things he can have is honey and certain fruits. He also can't have any complex carbs which means no grains...wheat, rice, corn, lentils, oats, nothing...only dirt. So his bread and muffins are made of almond flour (ground up almonds) it is about $10 for 3 cups. Also, it takes three days to make a loaf of bread because you need drained, home-made yogurt to make the bread.
So yes, my life is a little crazy and time and money are very scare and hard to spare. At one point I was encourage by Jason to make a 3 day visit to New York to see a good friend because I was going a little batty. So I used some frequent flyer points to get free tickets to New York and spent three days knitting, eating, and laughing with my friend Natasha. It was the was the best recharge I could ask for. Thanks Jason and Natasha.
So now I'm back and trying to pick up where I left off. But it didn't help that when in New York I started to watch Jaden's ABA sessions I recorded just before I left and seeing some of my instructors doing very unprofessional behavior. You would think that with a camera recording everything you do during a session you might be more aware of what you do. I found one of my instructors would just sit there for a good length of time just watching Jaden playing. Then they would take 10-15 min naps while Jaden colored on the walls or made huge messes. I saw the instructor waking up, wiping their mouth and seeing Jaden's mess and saying "oh, crap!" My thought was "oh crap is right!"
I started crying when I saw this and some of the other instructor's behavior and sessions. Some sessions only had 1 trial!!! No Reinforcement. I cried not just because I was wasting my money but because Jaden, who never sees the light of day, is stuck in this room doing nothing while my instructor sleeps or just sits there texting friends and talking on the phone. This poor boy's life is not easy and they only make it harder for him.Needless to say, I sent a very stern email out and I am holding a future mandatory meeting to re-train these instructors. I received many apologetic responses and I was pleased to hear them recommit to to promise they made when I gave them this job.
I will be making some changes though to help enforce their commitment to Jaden. I'm going to install a one-way-mirror on the door and NO cell phones are allowed in the therapy room. Also, they will be watching and critiquing sessions recorded of each other and of themselves periodically. I hope this will help.
But Jaden (despite the subpar instructors) and Brinn have both made great progress. It is amazing what you would do for your own kids that you would never do for yourself because of the work.
I just hope that God will bless my efforts.
Thursday, August 13, 2009
Motivation
This is the reason why we do what we are doing and endure what we are enduring. I am sure anyone else would do the same.
I forget sometimes the cute chubby baby that could eat a whole hot dog and a banana in a sitting when I'm dealing with the screaming tantrums of today. I sometimes wonder what another two years will bring and I hope for the best with all we are doing.
I forget sometimes the cute chubby baby that could eat a whole hot dog and a banana in a sitting when I'm dealing with the screaming tantrums of today. I sometimes wonder what another two years will bring and I hope for the best with all we are doing.
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