If there isn't an office for this, perhaps someone out there should get cracking and create this immediately. In fact, I think that might be an AWESOME use to all of this stimulus money that our grandkids will be paying into the ever after. Let me assure you, if said office does exist, I will be the first one in line at opening time tomorrow.
Have you ever had a job or a project you were in charge of and at some point along the way it hits you that you are in WAY over your head? Some fool thought you were capable and gave you this assignment and here you are stuck with it. Maybe you convinced that person that you were able...or maybe you resume was a bit more glowing than true. Either way, stuck is where you find yourself. Having one of those now what moments. Well friends, let me assure you that the now what? place is precisely where I find myself these days. I am certain, not suspicious, that I am not cut out for raising 2 kids with autism. I fail at this every stinking day. I have dreams--the same dreams over and over again.. They go something like this. I am in college (or high school) and the semester is drawing to a close and suddenly I realize that I completely forgot to go to a class. I missed it for an entire semester and tomorrow is test day. The bottom line is that missing this one class, forgetting it will have dire consequences on my future. Will I graduate? Am I too late to get it right? Can I make up that much ground? How on earth did I get here? How did I miss this completely for months on end?
In the other dream, I am in high school and it is time for a football game, and I can't find my cheerleading uniform. It's a silly dream I suppose, but in the dream, I run around frantically trying to play catch up. Trying to figure out what uniform I need, and where mine is. I spend the entire dream chasing my tail, and I miss the game, or sometimes I get there late. Same dream, and I never get it right.
What does this have to do with my kids? It speaks to the anxiety I feel, and the complete lack of preparedness that I live with. I always feel like I am coming up short. Like I missing part of the equipment I need to get the job done right. And that panic that sets in when you bite off more than you can chew??? I get that regularly in just daily life. How can a 3 year old make induce so much self-doubt? The problem is it is me (and Brandon) or nobody. I can't pass this off to a co-worker. I can't just passively sit back and hope it gets better. But at the same time, it is becoming painfully clear that I can't control this situation anymore than I can control the wind. So what is the best course? Buckle up and hold on? Fight like hell? Lay down and die? I don't know.
I am not positive we will all make it to tomorrow in one piece. Right now it is very much day to day around our house. I have never met anything more frustrating in my life. Wrung out. I am wrung out, beat down, and just out of ideas. What do you do when you just have nothing left to give? Take a vacation? I would worry about the person left with my children. The kids would be fine, but the caregiver might jump off a bridge. I am sure if they weren't my flesh and blood I would have walked away a few times by now.
We went to see Dr. Bernui (Autism/DAN! Doc) and let me tell you that trip was a solid day of misery. I will say that ironically the van ride was the best part. Thank you Little Einsteins. Once we go to the doctor's office, the tantrums and anxiety began. Kynsie and Kyan are scared of elevators, so we start up the steps. I had the boys with me. Barb was behind me with Kynsie. Brandon was parking the van. Braylen started up the steps without problem. Kyan began losing his mind as soon as we got in the stairwell. Kynsie followed suit. I finally gave up and carried Kyan under my arm like a football while trying to help Braylen up the steps and in the door. K & K were losing it as we came in to the Doctor's lobby. One woman was in there and so help me if that smug look on her face had turned into a comment, she probably would have left missing a few teeth.
We took them back to the exam room one at a time. Barbara played with Kyan and Kynsie with 'special toys' from her house out in the lobby. Braylen was a prince and played and chatted while Dr. Bernui examined him. We could still hear K & K howling out in the lobby. When it was Kyan's turn, he screamed the entire time and so did Kynsie. That tiny exam room was making all of us a bit queasy. The long and short of it was a screamfest, and that was before the bloodwork was done. My kids are freakishly strong, with Kynsie being the strongest by far. So daddy was on blood patrol. He took them back one at a time and bear hugged them while 1 nurse held the arm, and 1 nurse drew the blood. Braylen fought like a champ but did ok. Kyan kicking and fought and pulled one line out, so they switched arms but couldnt find a vein, so switched back and finally got the 4 vials required for testing. Kynsie ofcourse was not to be outdone and she kicked and fought, threatening at one point to stop breathing on them, so they had to give her some time to regroup before ever sticking her with the needle.
Everyone's blood was taken. We left with more supplements and the hope that somehow there will be relief. Dr. Bernui explained the purpose of each supplement and how it will effect the body and the physiological why of the behavior problems we are seeing in K & K. Bloodwork and urine tests will verify some of those susipicions and some will be trial and error. Braylen is being treated for food allergies/sensitivities, eczema, and asthma. The other 2 are obviously being treated for autism. The unfortunate part of new meds is that there is die-off from yeast, and that tends to exacerbate the behaviors for up to 2 weeks. We are only 3 days in, and I think I might be crazy--certafiably so-now.
I am going to try to post our chart for the kids' meds here just to give an idea. I am also going to take a picture of the bottles of supplements because it is mind-boggling. I can't get the charts to paste here, so here is a list.
Probiotics 1 capsule daily in drink
Zinc 10 mls daily
B12 topical cream 250mcg apply once daily
Folinic Acid 5mls daily
Digestive enzymes Before each Meal
Florastor- 2caps twice a day
Transfactor MultiImmune-1/2 daily for 1 week, then 1 cap daily, take 1hr before meals or 2 hours after meal-Braylen
Magnesium Citrate- 2 caps 30min before charcoal at bed. Kyan & KYnsie
Activated Charcoal- 2 capsules right before bed- Kyan, Kynsie
PRX- 1 Cap 2 times a day, 1/2hour before meals or 2hrs after meals-Kyan & Kynsie
GABA- 1cap twice a day- Kyan & Kynsie
Ora-Pancreas- 1 cap daily- Kyan & Kynsie
The liquids we give in syringes. The capsules we break open and mix into juice, rice milk, apple sauce or baby food. Logistical nightmare, but we are desperate so we are trying. I hope to give a breakdown of each supplement to explain what the function/purpose is, but that will be another post.