Taking the Scenic Route

What are you doing Mama?

27th November 2008

What are you doing Mama?

Imagine my utter shock when Zane came up and asked me this today while I was starting some soup for supper, and again later when I was adding turnip greens to the soup. And again later when I was rolling out pie dough.

I think he asked me that a total of five times today. He has NEVER asked me that before, but went out of his way to see what I was doing and ASK ME. Woah. Very cool.

Even cooler…he waited and listened to my answer, and sometimes asked again (which I realized was his way of asking for more information, not just re-asking the same question).

He also tried to change his own pull-up today (a poopy one) and wipe himself. He did this once or twice when he did the enzymes, but never since. In fact, he usually denies a dirty pullup because it annoys him to stop what he is doing to be changed. He just doesn’t care if it needs to be changed. Today he cared enough to do it himself. I hope this is a trend. Until he has more solid stools, I can’t take him out of pull-ups, but I have been trying for YEARS to get him to treat pullups like underwear so that we can at least not go through as many of them and get him on the road to learning how to use the bathroom, but he has never really cared before. This is new, and it is good.

I think we will definitely keep up the Nystin and probably move to doing a systemic anti-yeast sometime in the coming weeks. Oh, and probiotics too. He isn’t eating yogurt with any reliability now days, so I will have to get a supplement for him, but I have two that look good right now and will be trying one of them as soon as he is off the antibiotics for the ear infection. Maybe we are finally on our way to solving the bowel issues. I hope.

posted in Autistic Life, Biomed, Language Development | 1 Comment

1st November 2008

Saturday Night, the last night with the family.

As they day wound down and people left, we found ourselves lingering until it was just us and the other siblings with Jennifer. I think it was the first time it really felt ike family with the siblings for Zach and I. The uncomfortableness was gone and we were just connected.

All through the week we learned things about Dad, his relationships, how he lived, and our siblings. I am not going to share them on the blog because they are too personal, but I will say that we had some misconceptions. Zach and my heart healed a lot this trip, in ways I could never have anticipated. I hope they are also wanting to continue building a relationship with us.

As sad and hurt as I was that Jim had never met Zora, I am not any more. Although I realize that he could have made different choices, I understand that he did want to see her. That was good to know.

Sidetrack into autism stuff:

I still don’t really understand why nobody knew that Zane was autistic other than the siblings. That was a little weird for us throughout the week. I was confused, at first, why we were getting *that* look, but figured out that nobody knew. I guess I forget that “Autism” is still a scary word full of stigma for other people. I know he was tight lipped about things, but I was just really suprised that they hadn’t even told Jennifer’s brother, a doctor. He actually hunted us down on Saturday, shortly after he had found out about it. He had a granddaughter (I think…my brain was so foggy when he talked to me I am not 100% sure) who was non-responsive and showed many autistic traits as an infant. He did a huge amount of research and used biomed techniques (specifically, treatment for yeast overgrowth) and she is now indistinguishable from peers. (seriously, I didn’t notice any of the kids with any sort of autistic tendencies…so if that child was there, she really is indistinguishable even to the somewhat trained eye).

He talked to me at length about Zane’s symptoms (and man did it make me dig in my brain…usually I can list off all of his tests and evals and treatments off the tip of my tongue, but I was really fried and was struggling to make my tongue work. lol). He got me a script for some non-systemic anti-fungal and I am going to get with my doctor here to have him work with me on doing yeast treatment on Zane. Thankfully, he also agrees with going low and slow so it isn’t hard on Zane. I started him on a low dose of the meds when we got back and am doing a lot of reading on the diets I am going to need to implement. The diet part is really going to be rough because it looks like almost his entire diet is yeast-feeding. (except for meat) I plan on starting to change the diet tomorrow, the day after Halloween. (He has been looking forward to Halloween for the entire month and I was not going to tell him he can’t have any candy on Halloween…it could wait a few days)

So, I am back to evaluating poop on a daily basis. Fun. (no changes yet, btw)

There was also another person there I was introduced to who worked with special needs kids. They worked with a new program where you strengthen different parts of the brain to help increase learning. It takes into account which hand/foot/eye/ear is the strongest and develops a program based on that. I didn’t totally get it (again, major brain fog), but it sounded interesting. I have to dig through my stuff though because I know they gave me a pamphlet of some kind that, presumably, has the name of the program on it. The only thing I can remember of the name is the picture I have in my head of the “Little Giant Ladders” that I have seen infomercials for. I am not sure if the name has something to do with “ladders” or “orange ladders” or “little giants” or some other weird thing that I remembered that way for some reason. lol. Sometimes a visual memory can be really confusing.

And, back to the subject…
I am really glad we went. Zach was resistant to going for a while, but I knew he needed to, and I knew it would be a good thing, but I don’t think I even came close to understanding how true that was. When every body is raw and stripped bare by the trauma of such a sudden passing, it can go either way…either it is the last event that forever rips a family apart, or it pulls everybody together even closer than they were. In this case, even though we feared the former, we most definatly experienced the latter.

And, to finish on a lighter note, at the end of the day our camera was full. Zane picked it up wanting to take pictures, so Zach went through the camera and erased a few pictures so there was space for Zane to take about 3 pictures. The first was the back of a Ritz box, the second was the cool lighting fixtures in the kitchen, the third was this, confirming our suspitions that he really connected with Tirza:

posted in Autistic Life, Biomed, Death, Extended Family, Papo (Z's Dad) & Grammie, San Antonio, The Kids | Comments Off

11th April 2008

Enzyme update

I haven’t been writing much because we had to majorally slow down the enzymes because we can’t afford to replenish them until the next paycheck.  Instead of running out entirely in the middle of last week (leaving 3 weeks gap), I have been stretching it out so he isn’t totally without them. 

We did go through him starting to refuse any food, and that seems to resolved itself since I changed my approach. (and stopped trying to hide it in food)  I bought a bag of chocolate chips, melted some down, put dollops of the melted chocolate onto wax paper.  Then I put a dosage of the enzymes (both the Lacto & GlutenEase) in each chocolate dollop (after it was cool to the touch so that the enzymes didn’t get fried), used a toothpick to stir it into the chocolate, then dropped the toothpick in the dollop like a lollipop handle.  Put them in the freezer.  He is very willing to take a chocolate candy even with me telling him it has his medicine in it.  Seems to have eliminated the whole problem.  When I get more enzymes, I am also going to go to Hobby Lobby or Michaels and pick up either a candy or a lollipop mold (depending on what I find) to do this in instead.  Doing it freehand on a pan is really messy and time consuming.

posted in Autistic Life, Biomed, Money | Comments Off

17th March 2008

Enzyme roller coaster

Trying the enzyme regimen has brought up a whole host of old feelings that I thought were neatly put away.  “Old timers” on this journey will tell you that there are ups and downs, but somehow, I thought I had dealt with it and moved quite peacefully into “acceptance”.  I was naive.

I honestly started the enzyme therapy simply to make sure he wasn’t in pain.  As much as I told myself that, I keep finding myself looking for a sign that there is some dramatic breakthrough.  And as soon as I start getting excited at some small thing, or deeply disappointed in another small thing, I feel the most incredible guilt.  Overwhelming guilt because I feel like a hypocrite, because I am hoping for a positive change in his symptoms.  I can’t find a way to reconcile my feelings quite yet. 

I think watching him deal with some of the side effects is making it even harder.  He is making some improvements in language, ect, but he uses some of that to tell me he has a stomach ache and feels yucky.  Healing isn’t comfortable, I know.  I went through a lot of surgeries and drug treatments over the years to deal with endometriosis, and my mom had to stand by and watch me going through it.  I think it is harder to watch than to be the one going through it though, having been on both sides now.  I hate this and am excited about it at the same time. 

posted in Autistic Life, Biomed, Stress, Zane | 1 Comment

13th March 2008

Enzymes

Ok, nothing earth shattering, but we have noticed a few things, although it is all subtle.  (stop here if talking about poop bothers you)

Physical:  He drinks a lot more.  LOTS.  His appetite is down (and he is starting to be suspicious of food we have ready for him, and tries to hang out with us while we prepare his food), his poops aren’t as runny and much smaller in size, and much less frequent.  He also started coughing, which could be a cold, allergies, or a sign that there is a yeast/bacterial overgrowth and there are toxins being released as some of that dies off.  However, it isn’t in a volume that leave the poops stringy at this point.

Behaviorial:  He is really stimmy.  It was in the “what to expect” list, and I have heard from the ST who has several kids who started the same time as he did, that all of them are really stimmy.  Zane is the opposite in that he seems more lethargic, and the other kids are literally bouncing off walls and can find zero focus.  He is quite a bit more “chatty”, although you can’t really understand him, so it feels like an increase in volume, but only a small increase in usable language.   He does seem to be using more “full sentence” scripts at home than the more typical “one word” scrips we usually hear.  Again, some subtle changes, but not some huge breakthrough.

So, it is worth continuing at this point.  After talking with the mom of his “friendship group” cohort, I think I might add in some additional probiotics into his yogurt.  She does that with her daughter and it seems to be helping her.

On a funny note, you have to feel sorry for the Clinical Educators and ST students at the university.  A huge chunk of their clientele started the enzymes at the same time (because we all went to the meeting with the author), so she is seeing client after client that is fairly unpredictable from the usual patterns.  I am sure all the parents are hungry for changes too, so she has to deal with us parents as well.  I bet it feels like tornado season at work these days.

posted in Autistic Life, Biomed, Zane | 1 Comment

5th March 2008

Enzymes

At home, there aren’t any significant changes, although he seems to be using full sentances a bit more, and a bit more eye contact.  In therapy, he looked mostly like he was irritated with me pulling him away from his video game and he didn’t really want to be there.  *sigh*

We started the GlutenEase, in addition to the Lacto.  We finally go the vitamins in the mail, and we planned to start him, but he didn’t want anything that the meds could be hidden in, so hopefully tomorrow we can start them.

posted in Autistic Life, Biomed, Zane | Comments Off

4th March 2008

Enzymes

no change.

posted in Autistic Life, Biomed, Zane | Comments Off

2nd March 2008

Enzymes

It seems like he isn’t eating as much, but he didn’t really have a huge appetite the last week or so either, so it might just be a “not in a growth spurt” thing.  It does seem to be just a little less though.

When asked, one time he said his stomach hurt, but not enthusiastically.   Later he said it didn’t hurt.  He didn’t volunteer the information.  Our interpretation of that:  he probably didn’t have a stomach ache or it was pretty slight.

It seems like a slight increase in eye contact, but don’t know how significant it is since that changes day to day.  It was not shockingly different eye contact, but it did seem that there was just a bit more.  We aren’t sure if it is because we are watching for it though or if it is an actual change.

No changes in the diapers…still as stinky as always, but not really more so.

 

posted in Autistic Life, Biomed, Zane | Comments Off

1st March 2008

Enzymes

Early this afternoon Zane said that his “body hurt” and I asked if his stomach hurt and he said his stomach was “hot”.

Most of the day he was pretty stimmy…did a lot of running in circles in the back yard, giggling.  He said the grass was “bumpy”.  Much of the evening he wanted to play on the computer, mostly standing up on his toes, laughing, and some flapping.  He was in a good mood though.  We did get some eye contact during the video, but that was much more the exception than the rule.

On an odd note, when Zach spun him around today, he got dizzy.  We don’t remember ever seeing him actually dizzy before…he can spin forever and not get dizzy, so that was a bit different.  A few hours later Zach went to spin him again to see if he had the same reaction, and sure enough, when he set him down, he stumbled a bit.  Of course, it wasn’t like Zora who promptly fell over after a much shorter spin.  lol.

No changes in the diapers.

posted in Autistic Life, Biomed, Zane | 2 Comments

1st March 2008

Enzymes

 

http://www.enzymestuff.com/index.htm

 

 

posted in Autistic Life, Biomed | Comments Off

  • Zane's age

  • Zane is 15 years, 7 months, and 24 days old
  • Zora's age

  • Zora is 11 years, 7 months, and 28 days old
  • Random Quote

  • We must develop and maintain the capacity to forgive. He who is devoid of the power to forgive is devoid of the power to love. There is some good in the worst of us and some evil in the best of us. When we discover this, we are less prone to hate our enemies. — Martin Luther King Jr

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