We band of mothers

Happy New Year!

2008-12-31T09:13:00.000-08:00

Happy 2009 (well tomorrow!). :-)
Please enjoy my new music player with some of my favorite music. Also notice the new collage at the bottom of this page. I made it yesterday. I am so blessed to have such an amazing family.
Here's to a new year, new opportunities, more love, and more happiness!
Cheers!
Nancy

Merry Christmas!

2008-12-29T04:49:00.000-08:00

Merry Christmas!
Sam's favorite toy this year was a baby stroller and baby bottle for his "baby", although as you can see (slideshow), he had to try it out for himself! LOL

We were fortunate this holiday season to have the opportunity to serve others through church and the Autism society which put things into perspective for us. We are very blessed and tried to remain focused on the reason for the season and not "things". Very difficult for teenagers. Rachel enjoyed helping at church and really got into the spirit once we were there.

We have had a difficult year, financially, and weren't sure we would be able to do for the kids the way we've done in the past. We got very creative and they did have a couple of "cool" items to open. Mostly clothes this year which they appreciated. Sam opened his underwear and pants package and was clearly not impressed.

Sam has been enjoying going to Pump It Up and Bounce U with his father. I took him last week and that was fun, too, though 20 minutes in, I was trying to bribe him with McDonald's so we could go!

I'm teaching Sam to read with the eReadingPro program and it's working! He's really catching onto the words and reads them to me before I can say them. He's doing well at speech therapy, too, putting 4 and 5 words together at once. He gets lazy at home and I have to remind him to ask in a sentence or just prompt with "I...", then he's start at the beginning and end with "PLEASE".

Rachel has been going through some personal issues that I think we have a handle on now. I just hope this is the worst of it. We are able to talk now, which helps a lot in letting me know where she is, emotionally.

Seth is doing well. He moved to the basement and has his own "apartment" which stays constantly trashed. He and his girlfriend, Katey, made Christmas cookies on Christmas eve and that was so much fun. They had flour and sprinkles EVERYWHERE, including all over each other. There was a lot of laughter, which was great. Nothing a little vaccum couldn't handle.

Had a great and busy week with family and looking forward to a quiet New Year's Eve at home in my jammies. Bob and I have been fighting a head cold and my throat is still sore. I think I just need a rest.

Well, off to work. I'm at a turning point in my life where I need income but can't work during the day because I need to be here for Sam. I was there for my older two and won't abandon the one who needs me the most. But his therapy and supplements cost SO much. So I'm trying to get creative and work from home, work at nights and weekends, or start my own business...maybe a special needs daycare/therapy center with a friend. Could be an interesting year.

Gearing up for our second annual Walk for Autism with the Autism Society already. Walk will be April 4th at the same location. Planning starts in January, so I've been working with website companies to create a walk website for registrations this year. Would love to take that pressure off myself. It was a lot of micro-managing last year with spreadsheets and everything created from scratch. Exhausting to think about. We will have more community support this year with our partnerships with the Dayton Mall and Channel 2, so hopefully we'll have a great turnout. Pray for good weather!!!

Off to work....if I don't post before then, have a very happy New Year. See you in 2009!

Nancy

Increased Speech, Eye Contact...HBOT???

2008-10-08T10:12:00.000-07:00

Hello all,
Just an update on Sam's progress.
We took the HBOT rental back yesterday. Not sure if he realizes what we took back because it was dismantled. He'll surely get the idea when he sees all the space in the basement.
Hubby actually said he was going to miss it. He began to enjoy that time with Sam. I have a solution. I can lock them both in the closet for an hour a day together. Pretty much the same thing, less the oxygen and pressure! :-)
We can't be sure, but we both believe Sam's been giving us better eye contact, he's been friendlier and more outgoing, and his language has grown. He's now, regularly, putting two or more words together spontaneously. Even though we had to return the unit, whatever gains he's made, congnitively, are supposed to stay.
We've also got a good handle on his GI issues. He's now eliminating daily, which is so much better than the once a week. This could be HBOT, too, and if so, might revert. We'll just keep giving him the OxyPowder and Miralax and adjust as needed.
We're starting a new reading program with him called eReadingPro. Basically, a sight word program that uses very large flash cards, but does not demand a response. Just flashing the cards 3 times a day and adding to it. Eventually, he should start recognizing the words in other places and be able to read them. One gift we can build on is his incredible memory. I think this might work.
I spoke at UD on Monday and took Sam with me. I was talking to future HS teachers about autism and the IEP process. They were very receptive. I hope it was helpful to them. One thing I made sure they understood was not to underestimate either the parent or the child. When I played the video of Sam participating in the 3rd grade play, they started laughing when Sam reacted by laughing and blushing. He loves that video. I hope they got something from it.
After the UD event, I took Sam to breakfast at Frisch's. We got the breakfast bar and he was looking so longingly at the muffins that I allowed him to have one. And a pancake. Then we went to speech.
Not knowing he had had a diet infraction, Miss Sandra said he really wasn't himself during speech. He was distracted, not making good eye contact, bossy, and irritable. That tells me that the diet is working. He was pretty rough that afternoon at home, as well. Gluten is not his friend!
We would love to have continued with the HBOT dives, but money is such a factor. It's $2,200 to rent the unit for a month or around $20,000 to purchase our own. Neither is an option right now, especially with X-mas coming. Just knowing it was making small differences for Sam is enough to ask everyone we know to consider making a donation to the Sam fund, in leu of gifts this year. We'll take an improved kid over stuff anyday.
Take care everyone!
Have a great fall.
Nancy

HBOT is going great!

2008-09-05T08:12:00.000-07:00

We are nearing the end of Sam's first month of Hyperbaric Oxygen Therapy and things are going great! He now LOVES to get in the "space ship" with dad. He watches a movie, plays PSP or Leapster, or usually all 3 at the same time! He runs downstairs, throws his gummy bears and games in and climbs in to wait for dad. What a difference from the first few times we had to grab him and zip him in.
So far, no miraculous changes, although speech therapy is reporting improvements and, aside from a few random screaming fits, his behavior has been on the positive side.
BM is still an issue but he's going about once a week which, believe it or not, is an improvement.
We will be keeping the unit for another month with the help of the UHC Grant we received, which will reimburse us for the speech therapy we've already paid for out of pocket, to help cover the HBOT.
I started a fundraising Cafe Press Shop for Sam and hope everyone gets a chance to visit and forward it to friends and family. The link is to the right of the front page of the blog. Every little bit helps!
Did have a couple of unpleasant experiences with his new liquid vitamins, Super NuThera. We've been putting it in a syringe to be sure he takes it, and we aren't wasting it by adding it to his juices that he won't drink. Problem is, it tastes awful and he really doesn't take it easily. The first time, he let it dribble out of his mouth onto the carpet in the dining room. The second time, we wrestled until I had squirted it all over him, myself, the ottoman, and the carpet in the family room. Did you know nothing takes out Super NuThera? In fact, oxy powder, hydrogen peroxide, and carpet cleaner all make it even brighter yellow than it was to begin with. Aside from bleach, I'm out of options! Even the company we buy it from had no better ideas than that. Guess I'll be getting that nice wood flooring I've been begging for.
Talk to ya'll soon!

Why did they do this to my baby?

2008-07-24T05:28:00.000-07:00

I don't often let myself "go there". But this morning, I broke down and wept for my baby. It all started when I read a letter from the National Autism Association President Wendy Fournier about her experience at the DAN! Conference in Cherry Hill, NJ. I've been to a DAN! conference and I know how emotionally exhausting they can be.
I don't think Wendy will mind me sharing her letter with you: http://www.pixiesplace.com/trainride/jenny.htm
As I read her letter, I allowed myself to, once again, allow the pain and hurt to surface from what I feel the government has done to my child. I am convinced he is vaccine damaged. And the government will not take responsibility. The vaccine manufacturers are protected from lawsuits. While the CDC will admit there may be a link between some mitochondrial disorders and vaccines, they fall short of allowing testing on the vaccines they shoot into innocent babies everyday. And more and more are being injured or dying from these very vaccines everyday.
I don't have to convince my mother-in-law that something can go awry with vaccines. She's convinced she had a reaction to the polio vaccine and by the grace of God, she was pulled from the grips of paralysis. But she still has physical problems. I, too, had something happen to me at about the age of 2. I'm told I stopped walking and would scream everytime I was stood on my feet. The doctors were baffled. Somehow, I learned to walk all over again. My parents kept no immunization records so I do not know what I received. Why didn't any of this click with me when it came time to vaccinate my own children?
Because I was brainwashed to think that good parents protect their children from everything, including mumps and german measles. No, good parents don't take the words of physicians as gospel and blindly shoot their children full of toxins. They investigate, they make decisions based on what's right for their own child, and if they choose to use a safe vaccine schedule, they do.
The government, the CDC, and the American Academy of Pediatrics are all guilty of harming 1 in 94 boys; 1 in 150 children and do nothing. In fact, they increase the vaccine schedule each and every year. My children will never receive another routine vaccination. Not the flu shot, not Gardisil, nothing. If they need a tetanus booster, we'll make that decision when the time comes based on the risks.
I cringe when I hear that one of Rachel's friends received the Gardisil vaccine. It hasn't been tested. They say it protects from 4 types of HPV Virus, though there are thousands that can cause cervical cancer. Girls who have received the vaccine have had horrible reactions or have died. Their parents believe they are doing the right thing but they are not.

They are just blindly following the herd off the cliff.

HBOT is coming!

2008-07-16T09:00:00.000-07:00

We will be leasing an HBOT unit Aug. 5 for a month. That means no more 3 hour round-trip drives to Columbus for HBOT! YAY! Also, more dives in a row with more potential for improvement.
With just the 3 dives we have under our belt, I feel Sam's more "with us", more connected. He jabbers all the time and is trying to repeat new words. His GI issues are getting better, as well. Don't know if it's the HBOT, but when that's all we've introduced, it's hard not to think so.
We got a new trampoline for Rachel for her sweet 16th birthday and put that up last night. He waited until this morning to give it a try and LOVED IT! Of course it has the mesh safety enclosure and padding. I think it's a lot of fun, too!
Sam went to the back-to-school pool party last Friday and had a lot of fun. Just 2 years ago, he wouldn't get in the water past his ankles, and if someone splashed him, he'd cry. This year he was passing the football with his friends (more like having his friends fetch the ball), laughing, all over the pool, interacting. It was great to watch. The only problem came when I went to get him a hotdog and the sun set. It got dark quickly and he sort of freaked out. By the time I got back to him, he was crying and the lifeguard was trying to talk him out. I felt badly but he got over it quickly. He really hates the dark. Luckily, it was loud and nobody could really hear him.
School started yesterday and so far, so good. But as his teacher says, we're in the honeymoon phase. We'll see how he's doing a month into it. His regular (new) teacher is at a TEACCH conference this week so his old teacher is filling in. Can't wait to see how the new teacher organizes the classroom, supports, and the schedule. She said she's very structured and that will be good for Sam.
Well, off to the salt mines. Got some DAS events to prep for. Ugh.

Say aaaaaaahhhhh....

2008-07-14T11:55:00.000-07:00

Another first! Sam got his teeth cleaned! No sedation, no tears (okay a couple), no freaking out! I give all kudos to Wright Smiles Pediatric Dentistry in Springboro for their patience and accomodations. Sam sat on the dentist's stool but the hygenist worked around him and his fears. They did a terrific job and his teeth have never looked better! The dentist even said she didn't see any signs of cavities.
I was just over the moon that he was able to do this. I thought we'd always be sedating him for cleanings. Guess I should learn to stop underestimating him!

Camp Silver Lake!

2008-06-26T12:22:00.000-07:00

Well, both boys survived their first week at Camp Silver Lake! Sam was a first-time camper and Seth was a first-time volunteer. Sam loved the lake even though it was very cold! One of his therapists, Danielle, went to camp with Sam. She helped him through the rough patches. She said it was a lot of fun.
Seth enjoyed his time at camp so much, he can't wait to go back! He was well-liked by the kids and was awarded a $25 gas card by the camp director for his enthusiasm and kindness to the boys. In fact, he found Peter's bandana in his pocket today (Peter was one of his charges) and he put it on and tied it, and wore it around the house. I think he misses Peter.
I was certainly nervous all week with Seth driving the two of them to New Carlisle (45 minutes) and back, and what made it worse was Seth's inability to call me when he got there! Then he would turn his phone off, per camp rules, and I would be left wondering all day if they made it safely! Finally on Friday I was going on the "no news is good news" premise just to get through the day.
Rachel went with me for the family s'mores and songs on the last day of camp and she said she'd like to volunteer next year. So I may have all 3 kids attending Silver Lake next year! Woo-hoo!

HBOT update 6.18.08

2008-06-18T12:10:00.000-07:00

Well, HBOT has been interesting. The first dive last week was difficult at first. He stepped into the "spaceship" with me, but then wasn't sure he wanted to be zipped in (neither was I!). I had to hold him screaming as she zipped us in and started the oxygen flow. Sam was extremely nervous and aggitated but settled down once the hissing quieted down and his movie started. The first dive was only 30 minutes long.
On the next dive, which was the next day, he climbed in okay and sat down but this unit had a very loud hiss and he was up in the front porthole telling Amy that it was too loud! He was climbing all over me to make contact with her. Once our ears pop, it's relatively boring. Sam watches his movie and eats skittles and I just lounge there with him laying on me. The last unit was also very warm inside and Amy said in the summer they get like that. I was getting very claustrophobic toward the end when I had nothing to drink, no air, and I was sweating. My ears hurt more than Sam's, I believe, and Angela said I could take Coricidin D for that. That dive and subsequent dives are 1 hour.
We don't have any dives scheduled this week because of camp but will be going again on Tuesday the 24th of June. I wish a unit was available for lease but was told there was nothing available until November! I might just lease a unit directly from the company, I don't know. The 1 1/2 hour drive one way is very difficult.
Haven't seen anything remarkable from Sam except maybe a slight increase in language. Instead of "sec-und" when he wants you to wait, he said "Wait a second." very clearly. And instead of "ho-home" he has been saying "home", with prompting. Could be speech therapy, could be HBOT. Two dives is really nothing to expect change from. Maybe the first 40.
I'll keep ya posted!

Apparently, nothing.

2008-06-14T18:37:00.000-07:00

So what happens when a 10 year-old consumes a whole bottle of gummy CoQ10 and a whole bottle of gummy B-12 vitamins? Apparently, nothing.
When I discovered a red B-12 gummies on the floor of the kitchen, I was alerted to the fact that someone had apparently dropped it, en route to the living room, where Sam normally takes his supplements. When I found the second one, I was alarmed.
I looked for the bottle and didn't see it, so I took the two gummies to Sam and said "Where is the bottle?". He calmly said "Trash".
I immediately googled "B-12 overdose" and learned it's a water soluable vitamin and what overdose symptoms to look for. As close as we could surmise, it had been several hours since he had consumed them, with no adverse affects whatsoever. He had been to the playground. Had eaten dinner. And he was acting normally. Looked normal.
About a half an hour later, I realized the CoQ10 bottle was also missing. I tore through the trash and found both bottles, neatly recapped with their childproof caps, and discarded together. Empty.
Again, I rushed to the computer and googled "CoQ10 overdose". As far as I could tell, CoQ10 is an enzyme mainly used for heart conditions and there is no known overdose level. Watch for vomitting, diarrhea, etc. He was acting fine. Nothing so far.
Since the discovery, he has had potty time, taken a shower, played with his new electronic drum set, eaten a bowl of cereal, and is brushing teeth for bed. Nary one little sign that something is wrong.
I hesitate to call poison control or take him to the E.R. and I'll tell you why. When Seth was small, he took a swig from a bottle of ambesol. Following that, he had to have his stomach pumped and activated charcoal put in which made him vomit black tar all night long. Then, on another occasion, he drank Triaminic straight from the bottle. Poison control said he might be a little hyper from the sugar but otherwise fine. On a third occasion, he ate the moisture absorbing crystals from a suitcase while we were on a trip. It says right on the little bag DO NOT EAT. Poison control said they'd pass.
So I'm watching for signs of physical distress, pupil dialation, vomiting, or anything that might alert me that there's a problem. If there is, we are ready to hit the road. But I suspect those gummies are more sugar and gelatin than actual vitamins and enzymes. Of course I kept the bottles just in case. Not a chance I'm going to get any sleep tonight, though.
Thanks childproof caps for not doing your job. He was able to open both bottles??? Gimme a break!

Story on HBOT

2008-06-09T10:10:00.000-07:00

Came across this http://www.ivanhoe.com/channels/p_printStory.cfm?storyid=18775 regarding HBOT. We start Sam's HBOT treatments tomorrow (Tuesday). I'm nervous about how to get him into his "spaceship" but am taking an arsenal of bribes. Hopefully it'll work. I'll keep ya posted.
Nancy

Thumbs Up!

2008-05-30T16:21:00.000-07:00

When you're this close to the action, it's difficult to step back and see the progress he's made. Then it hits you up side the head.
We were sitting in a speech evaluation on Tuesday and I was trying, desperately, not to speak for Sam. You see, Sam has autism. I, being his mother, can, intuitively, know what he's trying to say, even if he can't say anything. So I busied myself with my planner and tried to send him the answers telepathically.
It was fill in the blank. "Sally's cat is IN the chair". "Now Sally's cat is...". She was looking for "behind the chair" but Sam said "out". It was accurate. The cat was out of the chair. I wondered if she had counted that right or wrong as I tried to read her markings upside-down. I was ready to plead the case for "out" when she moved on to the next question.
"This is Mary. Mary is going UP the stairs." "This is John. John is going..." I held my breath thinking "down the stairs...down the stairs..." but Sam only looked at the picture. He was probably wondering why these people always had such dull names. That's what I was wondering. Finally he said "down". The speech therapist said "hmmmm.". She was looking for "helper phrases". The correct answer was "down the stairs".
The good part was, Sam was paying attention, for the most part. He was still in his chair. And he hadn't yet melted down. I was giving him big points for that.
Somewhere halfway through the interrogation, Sam responded with what he thought was the right answer, then turned to me and gave me a huge grin and a thumbs up. It melted my heart. That was such a cognitively-aware thing to do! He was looking for reinforcement. And I didn't care of the answer was right or wrong! I gave him a huge grin and thumbs up right back.
To me, that was more important than whether John had helper phrases or not. Sam was learning social cues. I know he'll pick up on the nuances of language as we go along. What I wasn't sure about was whether he'd pick up on the slang, cliches, and signals we give each other that mean so much. I tell ya, when he says "Oh sure!" instead of the monotone "yes", I glow inside. Because understanding social cues and how to understand the unspoken language we all speak is so very important. And he's getting it.
Thumbs up, Sam!!!