That's what I am about to do- exhausted is an understatement right now. Jack has continued to have sleep issues, which we are working on, but long story short I have basically slept at the foot of his bed for the past 2 weeks. I don't want to lie beside him because I am trying to enforce the whole "this is your bed thing", so I keep ending up at the foot. My back-oh boy. I should be asleep right now, but sometimes I just need to unwind, and thanks to you lovely people, debrief.
We didn't have Jack's IEP yesterday. I postponed. And hired an advocate, who we are meeting with on Sunday. I am anxious to get services in place for Jack, I really am. I just feel that no matter how much I prepared for Thursday's meeting I would be walking in with a huge disadvantage- I would not know what Jack is entitled to, what the state is required to provide for him. How can I fight for something when I don't know what a reasonable request is? I could read until I was blue in the face and do my best, but I came to the decision I did for one main reason. I am NOT willing to risk Jack's education while I "learn". This is not a trial and error situation for us- if we get the right services in place now, Jack has the potential to go so so far. If it takes a year or two, we could be faced with a completely different child who is too frustrated and intimidated by school to perform to his potential. Nope. Not gonna happen. Or, I could get so frustrated with the system that I would want to send him to a private school? The advocate is MUCH more cost effective than paying private school tuition. So that's the story on that.
Today was an action packed day. Nate and I had an appointment for his More Than Words class at 8:30am to be filmed doing directed play. Basically I use the techniques they have been teaching in class and demonstrate how they are working for Nate. And they are working for him to a certain extent. Yes, he is still the furthest behind of our group, but he is progressing, and that is what I choose to focus on. So that was about 45 minutes from our house and took about an hour. When we finished, we swung back home, picked up John and Jack and headed 45 minutes in the opposite direction for our follow up appointment with the developmental pediatrician.
I am getting used to the barrage of new interventions that are flung at me with each visit. The rapid fire questions- what improvements did you see with this, how much, how long, stand on your head, pat your stomach, etc. I think I'd better start keeping a calendar with start dates and daily observations. Otherwise it all starts to run together. I did remember to ask him if it was ok to STOP things that don't make a difference and he said that's fine. Which is a good thing because a. this is what I have been doing and b. if I didn't, each boy would be on about 1000 things by now- try mixing that in juice! Decisions made today:
transdermal glutathione for each boy (will explain some other time- brain too tired at the moment)
vitamin C
inositol for Jack
increased GABA for Jack
add carnitine
add miralax for Jack
add fluconazole for both boys- suspected continued yeast issues
and last but not least---add methylcobalamin injections long term for Jack
Well shit. I'll get right on that. The most overwhelming intervention is the shot for Jack. I did it for a week with him in early December to confirm he is a "responder" (he is- we all slept that week praise God). I used EMLA cream so his bum was numb. We talked about it for days. The first time I gave him the shot he was mad at me for days. He was so anxious about "the event" that he could talk about nothing else. So we talked, and I asked him if he would feel better if I put the cream on at bedtime and gave him the shot while he was sleeping. He said yes. And he seriously slept through it. But it's a complex process- no matter which bum cheek I put the cream on, he seems to sleep on that side. If I don't get the shot in during his first REM cycle then he starts to wake up. So I need to do this 3 times a week for approximately, ummm, 3 years? Hopefully as he gets a bit older the process will be simpler?
While all of this leaves my head spinning, and the fact that I had to come home from this and put in a half day of work on about 3-4 hours of interrupted sleep made me feel, yes, like I was going to drop dead, I am very grateful. We have more to do, yes, but at the same time, there is more we can do! I am watching several families who are dear to me right now go through some very difficult, heart-wrenching times with their children. My heart is breaking for them. Watching their strength brings me to a place of peace with my own situation. Yes we have challenges, but not life-threatening. Noone is in the hospital, and these interventions are to improve the boys' lives, not save them. They are ok. Physically, they are ok. And that is everything. Every once in awhile in the midst of this swamp of sometimes seemingly random interventions, I need to stop and remind myself of this. My boys are ok.
We didn't have Jack's IEP yesterday. I postponed. And hired an advocate, who we are meeting with on Sunday. I am anxious to get services in place for Jack, I really am. I just feel that no matter how much I prepared for Thursday's meeting I would be walking in with a huge disadvantage- I would not know what Jack is entitled to, what the state is required to provide for him. How can I fight for something when I don't know what a reasonable request is? I could read until I was blue in the face and do my best, but I came to the decision I did for one main reason. I am NOT willing to risk Jack's education while I "learn". This is not a trial and error situation for us- if we get the right services in place now, Jack has the potential to go so so far. If it takes a year or two, we could be faced with a completely different child who is too frustrated and intimidated by school to perform to his potential. Nope. Not gonna happen. Or, I could get so frustrated with the system that I would want to send him to a private school? The advocate is MUCH more cost effective than paying private school tuition. So that's the story on that.
Today was an action packed day. Nate and I had an appointment for his More Than Words class at 8:30am to be filmed doing directed play. Basically I use the techniques they have been teaching in class and demonstrate how they are working for Nate. And they are working for him to a certain extent. Yes, he is still the furthest behind of our group, but he is progressing, and that is what I choose to focus on. So that was about 45 minutes from our house and took about an hour. When we finished, we swung back home, picked up John and Jack and headed 45 minutes in the opposite direction for our follow up appointment with the developmental pediatrician.
I am getting used to the barrage of new interventions that are flung at me with each visit. The rapid fire questions- what improvements did you see with this, how much, how long, stand on your head, pat your stomach, etc. I think I'd better start keeping a calendar with start dates and daily observations. Otherwise it all starts to run together. I did remember to ask him if it was ok to STOP things that don't make a difference and he said that's fine. Which is a good thing because a. this is what I have been doing and b. if I didn't, each boy would be on about 1000 things by now- try mixing that in juice! Decisions made today:
transdermal glutathione for each boy (will explain some other time- brain too tired at the moment)
vitamin C
inositol for Jack
increased GABA for Jack
add carnitine
add miralax for Jack
add fluconazole for both boys- suspected continued yeast issues
and last but not least---add methylcobalamin injections long term for Jack
Well shit. I'll get right on that. The most overwhelming intervention is the shot for Jack. I did it for a week with him in early December to confirm he is a "responder" (he is- we all slept that week praise God). I used EMLA cream so his bum was numb. We talked about it for days. The first time I gave him the shot he was mad at me for days. He was so anxious about "the event" that he could talk about nothing else. So we talked, and I asked him if he would feel better if I put the cream on at bedtime and gave him the shot while he was sleeping. He said yes. And he seriously slept through it. But it's a complex process- no matter which bum cheek I put the cream on, he seems to sleep on that side. If I don't get the shot in during his first REM cycle then he starts to wake up. So I need to do this 3 times a week for approximately, ummm, 3 years? Hopefully as he gets a bit older the process will be simpler?
While all of this leaves my head spinning, and the fact that I had to come home from this and put in a half day of work on about 3-4 hours of interrupted sleep made me feel, yes, like I was going to drop dead, I am very grateful. We have more to do, yes, but at the same time, there is more we can do! I am watching several families who are dear to me right now go through some very difficult, heart-wrenching times with their children. My heart is breaking for them. Watching their strength brings me to a place of peace with my own situation. Yes we have challenges, but not life-threatening. Noone is in the hospital, and these interventions are to improve the boys' lives, not save them. They are ok. Physically, they are ok. And that is everything. Every once in awhile in the midst of this swamp of sometimes seemingly random interventions, I need to stop and remind myself of this. My boys are ok.
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