THE HBOT

Here is a glimpse of our HBOT adventure.

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.

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?

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 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

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.

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.

Not so Quiet Sitting

So just to let those of you out there who are wondering what I mean when I talk about a quiet sitting I thought I would share a little of my piece of heaven with you. This was a Quiet Sitting I did that lasted about 20 minutes because Jaden wanted to be carried up the stairs to the therapy room but we are trying to teach him that he needs to walk. I didn't post the whole 20 minutes. I only posted about 1 min. But if you want to know what it is like real time just watch the video 20 times. Trust me you'll love it....as much as I do.

So moms of non-autistic children count your lovely blessings. You don't know how much work you are missing out on. Don't get me wrong I wouldn't trade my love bugs but dealing with the symptoms of autism really is one of the hardest things I've ever done.

Enjoy!!!

The First One Bites the Dust

So sadly the rumors about hiring college students are true. They are very flaky. It is interesting how because I don't have a business sign out front or have them dress up for work I tend to be no more than a mother hiring a babysitter.

I have had to cover shifts, as my instructors call the day before or the day of and can't make their shifts. I tend to do the most hours of therapy for Jaden out of all the instructors, which saves me money, but it also makes me a horrible mother and wife. I tend to get a little burned out.

But only after barely working for me for two months I had an instructor quit. They seemed to enjoy working with Jaden so I was surprised when they gave me their two week notice. The funny thing was was that they were the most proactive in getting this job. They really wanted it. I guess they learned what their calling in life really wasn't.

So I'm a hiring again. I've had only a few resumes and only one golden applicant. We'll see what happens. You may think what's the big deal about hiring a new person? But let me tell you the costs:$75 for one newspaper ad endless time calling schools and calling applicants and interviewing them. Then it will cost an extra $250 to train them...at least. So our bleeding account will be blood letting for a while

...And with all the stress my infamous cold sore is back. Lovely.