
Monday, December 31, 2007
Happy New Year

The Truth
Parents come to me for help because they think I know something. I have a blog. I make good gf/cf graham crackers their children like. I have one of the best DAN! doctors in the world now. We've been down many roads. I have tons of URLs to send out. Most of the time, I appear to keep a positive attitude.
Someone made a remark that I was somehow an expert on autism. Nothing could be farther from the truth. I don't want that crown.
Hey people, I'm out here in the trenches with you. My son is better in many ways, but he is not recovered. I'm hoping for that. I'm working toward that always. But I have my hard times, my moments of doubt, my anger at God and the world and vaccines and...just all of it. The why, why, why that never will be answered. Sure, I know better. But when you're tired, you just feel like throwing in the towel. That's where the, "Surely, I didn't sign up for this" whine comes from.
You know, depriving a person of uninterrupted sleep is part of torture. Then, making them stay up all day and keep moving, always working, cleaning, preparing food, cleaning up food, changing diapers (how many years now?), etc. How can you expect to be okay?
I think I saw at the last DAN! conference a course for parents in how to take care of yourself. If I can just get my son back into school, I can go use the massage gift certificate I got for Christmas. I need a few of those per month. Fifty pounds and he still hangs on my neck and wants me to hold him. My body is sore.
I started taking some of the good supplements that Lib's doctor prescribed for him. I've got to get a grip on my health. I have an appointment in February to get the hormones checked and balanced. The thyroid and adrenal glands are just about shot out. I saw my homeopath last year who told me to get in balance before I slide into good old menopause.
I spend a great deal of time caring for my son, but also trying to manage all of these dark emotions. Dealing with a child with autism permeates every level of your life, marriage not withstanding.
You have to find ways to deal with it, manage it. I need a break. I don't have the money to pay anyone, though. I recall that I used to use exercise as a way to feel better and maintain my sanity. I stopped that this summer when the whole DAN! protocol got put into place. I was too tired to put on my shoes and walk. I think I will bundle Liberty up today and just get out and get some good endorphins going.
A blogger friend of mine wrote today about feeling hypocritical, posting about the positive and sometimes living the negative.
It's not hypocritical. We have our good moments and our bad ones. They can't be helped. Some days we are going to allow our well-being in, and other days will be far from it. We need to be able to reach out to people who understand. I've met many moms through this blog who have helped me, albeit across the miles, just to feel a little more connected, like I'm not in this alone. We post about what helps, we vent about our frustrations.
We hope that something positive will eventually come out of this hard situation in which we are living today.
Yes, my friend, in the end, gratitude for what we do have, for what IS going well in our lives, will eventually right our overturned boat and put us back in that stream. Sometimes we just have to wait until the dark shadow passes to get there. Sometimes we need our friends to keep it in perspective.
Saturday, December 29, 2007
Thank You Donald Trump!

Trump speaking out on vaccines will give the autism community a further boost, perhaps even help the push for insurance companies to cover treatment. I'm so grateful.
http://www.ageofautism.com/
The twilight zone of Christmas vacation
I have hardly had time to post anything since Christmas, I've been so exhausted.After Liberty lost his tooth, I never thought to expect another tooth to be pushing its way in. Well, of course, that is what they do. I guess I thought I was done with teething. Liberty developed this strange high-pitched howl about a week or so ago and now I guess it was probably this tooth pushing through, although I don't remember having pain when my permanent teeth came in. That was a million years ago, so maybe I did, I don't know. My mom is not here to ask.
I have not had much sleep in the past few weeks. I finally realized it was probably his tooth that was causing his inability to sleep. I have also started his anti-fungal and he doesn't seem to be having much trouble stomach-wise, but who knows? He won't point to a body part. All I can do is ask "What's wrong?" over and over again to no avail, then he gets frustrated and the crying turns into a tantrum. Poor kid. He can't tell me what he needs. I wind up feeling completely helpless. And this is usually in the wee hours of the morning.
Another unusual behavior is for him to request a DVD to be played, sit and watch it once, then get to a part he doesn't like wherein he brings me the remote. I run it back for him but then he sits and cries. If I turn it off, that is worse. I have then committed the heinous crime. Then, he's just gone, screaming and crying and I'm at the end of my rope. About 20 minutes later, he's over it and onto the next thing.
He had a great Christmas and was very engagable. He has done pretend play with some of his toys. He acknowledged all of my family members, and he did seem to understand what we were saying. He enjoys having them all around.
BUT, two weeks is a long time to be off from school, that's all I'm saying. Seven more days and counting.
Last night I was up with him at 3:00 AM, then 5:00 AM, then 7:00 AM. I can barely get myself going and get things done around here, before he is pawing at the door to go. I have tried to find things for him to do, but we now have a week of continual rain and very cold weather coming our way. I can only afford to go to a bouncy place so much and play. At school, they really work the kids and when he comes home from school, he is asleep by 6 PM and sleeps through the night. This is what has really thrown me off. I want my good sleeping child back! I want MY sleep back.
And, you know how when you are tired, things don't look as good as they might be? I'm perceiving through tired eyes.
I wish I had more news to "report," or nice stories. We are back to just kind of hanging out and surviving until school starts again. I can say that Liberty is giving better eye contact and attending. This seems to be getting better with each day, and it seems his receptive language is increasing. One more week of the antifungal, then after liver function tests, we start the Valtrex.
So, I suppose we are moving forward, though I think I'm a couple of good night's sleep shy of seeing this clearly.
Sunday, December 23, 2007
Merry Christmas
Wednesday, December 19, 2007
Knock me over with a feather

Today on Dr. Phil

Multiple Guess
For example, he is really into learning numbers, shapes and colors. Even though he is still non-verbal, he is pointing and "counting" along with the DVD he has. It's his favorite suddenly and he must watch it when he comes home from school and before he goes to school. He likes it when we sing along. He looks at me and smiles and waits to hear the cue to start counting and then he runs up to the tv and puts his finger up to the shapes to count them when they light up. This has never happened before. He's so bored with all of his puzzles and things at home, that I feel I need to ship them all out and get more challenging things. It looks like we are moving up to the next level of his development. This is very positive.
But then...there is some toe walking, and a little hand flapping, a strange howl he has perfected as an attention getter and a few fits. Hmm. Suddenly, he cannot stand the seams on his shirts, or on my shirt and fusses and picks at them. I have taken to turning his shirts inside out and letting him wear them that way. Suddenly, he won't let me cut his hair, can't stand the brush on his head. This is the kid who had minimal sensory issues. Dr. Bock said this is common. One step forward, two steps back. Still, it throws me off kilter when it happens.
It has happened so much that I am able to tell myself not to dwell too much on the new "negative" behaviors. We have introduced some new supplements. Maybe that's it. I know that things change quickly; maybe this is just a phase.
It's hard when he's sick, though. He has been dodging a cold for a week. The homeopathic medication works pretty well, but the little tike still cannot blow his nose.
For the past few nights, he has awakened with a scream. He wants me to pick him up and rock him. Then he starts laughing and wants me to tickle him. This is not so cute at 2 AM. I am truly exhausted this week.
Sitting in the rocker, my mind goes through the possible things this could be:
a. his tummy hurts
b. he is constipated.
c. his nose is stuffy.
d. he is having a reaction to something I gave him.
e. he's too cold.
f. he's too hot.
g. he's hungry.
h. he's scared of the dark.
i. it's too light in his room with the Christmas lights outside.
j. he somehow was exposed to gluten.
Still, it's anybody's guess and I've run out of intuition at 2 AM.
Tuesday, December 18, 2007
Down the Rabbit Hole
"Would you tell me, please, which way I ought to go from here?"So, the parents of newly diagnosed children will begin now to have more resources available, at least in the form of information. Jenny McCarthy came along and made the CDC shake in their boots; she spread the hope of recovery, made more people aware of the diet, and dared to say on national television that "no way in hell" would she vaccinate her child again. I respect her a lot for putting herself on the line. But she knows her mission.
Friday, December 14, 2007
Getting the Bugs Out
I had a great follow-up appointment with Dr. Bock. I actually had it early this time because of the snow storm that was rapidly moving into the New York area.Wednesday, December 12, 2007
A Different World
Tomorrow is our appointment with Dr. Bock. Let's hope he's on time. Okay, I can always hope. Love him. Appreciate him. He is so busy, though.I am eager to talk with him about Liberty's test results. I don't have them all, and I am avoiding thinking too much about them today. I have to keep telling myself that this is why we "hired" Dr. Bock - for his expertise. Still, it's one thing reading anectodal stories and researching the DAN! protocol, etc. and quite another to look at your child's tests results in your hands with metals glaring back at you. I knew it and thought I'd be relieved. Initially, I was. Then, the questions started rolling in. Where did he get lead, PCBs, mercury....from vaccines, sure, but lead? That much lead? Is this really lead poisioning I'm seeing?
Yesterday, I was in Target, and on my way out the door, I stopped at a wall of Christmas lights, thinking I might get a cheap set and throw some on our big evergreen out back. I flipped the box over and on the back there was a warning, paraphrased as something like this:
Warning, handling these lights exposes you to lead. Lead has been shown to cause....[all sorts of nasty stuff]...make sure you wash your hands before eating or touching a child....
I thought about decorating the Christmas tree the other day with our gazillion lights we store in that box in the garage. Did I wash my hands? Eat a Christmas cookie while decorating? How many times did I touch Libby or did he touch the lights? Even the cute little figurines they sell that light up and have the train going around the track and Santa flying overhead with his reindeer have the same warnings on the box.
It's getting so I just can't keep up.
Now, they say don't microwave anything. I told the teacher the other day to take Lib's food out of the plastic and put it on paper plate when she heats up his lunch. He won't eat a sandwich, so what am I to do? You don't eat cold spaghetti (well some of us do, but that's beside the point), or pot roast or chili (his three major foods) cold do you? I could send water in a glass bottle, but they frown on that because it can break.
I just watered my lawn and touched the lead-infested hose. I forgot to wash my hands. Now my keyboard is probably covered in lead dust.
I just want someone to tell me how to live so I am not further contaminating my environment anymore. I like to stay in the solution and not dwell so much in the problem. I know there must be a new habit or routine I can get into. I've bought Seventh Generation products. I read labels. I clean with Simple Green. I guess I need to get a shower/water filter for bathing now.
Some people say, live your life and don't worry about it. I used to think that way. But now that I have Liberty and he is living proof of our toxic world, I think we have to, not worry so much, but be conscientious and take appropriate measures. Thing is, where do you get reliable information about what is toxic and what isn't? I don't have a lab in my home to test everything.
I know to wash my hands a lot and especially now because of the Staph bug. Do I just swab the house down routinely and vacuum a lot? I think so. I mean, it's all I can think to do.
I think I will ask our homeopath what he thinks about this and report back about it. Save time scouring the internet, like I have that kind of time anyway.
I would love to hear about what kind of measures you have taken to "detox" your family from these environmental assaults! We need a new way to live in this obviously different world.
Monday, December 10, 2007
Results Finally In: It's Metals!

Sunday, December 9, 2007
Setting the record straight

Saturday, December 8, 2007
Have A Lead-Free Christmas!

Blue Dominoes site lists about six more links of safe toys and is a nice site itself.
In light of the recall of nearly 1 million Chinese-produced toys tainted with lead paint, below is a list of toys made in the USA:
• Battleship• Bicycle Playing Cards• Boggle Jr.• Candyland• Chutes and Ladders• Clue• Connect Four• Crayola Crayons *• Life• Louisville Slugger• Monopoly• Mouse Trap• Operation• Parcheesi• Play-Doh *• Pop-O-Matic Trouble• Radio Flyer Discovery Wagon• Scrabble• Sorry• Stratego• Tri-ominos• Trivial Pursuit• Yahtzee• Melissa and Doug U.S.A. Floor Puzzle (Most puzzles are made in the USA!)
* Note: Not all packages of Crayola Crayons and Play-Doh are made in the USA -- please check the label.
Also, anything you buy from the American Plastic Toy Company is made in America.
You can also find American-made toys on these Web sites:
• www.ShopForAmerica.com• www.ZebulonUSA.com• www.usmadetoys.com•
www.unclegoosetoys.com• www.holgatetoy.com• www.maplelandmark.com
Finally, for more information on how to buy American, visit: www.howtobuyamerican.com
Tuesday, December 4, 2007
Anything's Possible!

http://abcnews.go.com/GMA/OnCall/story?id=3950843&page=1
