Great OnLine Support Groups

I have been away since Christmas, things have been a bit crazy but that is for another post. I have been spending a lot of time at the above website MDJunction. As my regular readers know, I have plenty of diseases and disorders. I have found some really great groups that I belong to and MDJunction has way to many to mention here. So, if you are in search of an online support group with kind, friendly and knowledgeable people I encourage you to check out MDJunction.

Here a the groups that you can find me in:

• Anxiety Disorders
• Autism - There are several Autism support groups
• Chronic Fatugue Syndrome
• Hypothyroidism
• Insomnia
• Parathyroid Gland - Since problems with the Parathyroid are fairly rare, this group covers all Parathyroid problems. I am a group leader in this group.
• Polycystic Ovarian Syndrome
• Social Security Disability
• Thyroid Cancer - All types of thyroid cancer. I am a group leader in this group.

If you do not see your problem listed here, I am sure that there is a group for you. See you there soon :D

Her Option ~ Cryoablation Update

Monday morning, I had the Cryoablation done in my doctors office. Sunday night the anesthesiologist had called me to go over my crazy medication allergies and let me know what would be going on. I can’t tell you really how it went because I was completely out. Not out like surgery but more asleep. I remember them putting me under and a little of waking me up, other than that nada. When I woke up I was really thirsty, I mean really really thirsty. While I was waiting for them to let me go home, I didn’t really have much pain at all. By the time we were leaving the cramping had started. It was more like a really bad period cramp or cramps that you get just after child birth. By the time that we made it home, I had to take an Ultram for the pain and then another a hour later. Throughout the day I had to alternate Ultram and Tylenol. The pain was not like surgical pain but, it was very uncomfortable.

Day 2 was much better. I was still cramping, spotting a little bit and used Tylenol and Excedrin. The added benefit was that since my husband had to drive me to and from the doctor on Monday, he just took the entire week off. So, we went out to eat. When it is just the two of us, we try to go to places that our picky youngest won’t eat. We had planned to go to an Indian place but they were closed? So, we wound up eating at Razzoo’s a very yummy Cajun place. It turned out to be a very nice lunch date.

Day 3, I had a checkup with the doctor. After waiting a bit, he was busy delivering babies, the doctor came in. I told him how I was feeling and he did a sonogram. The sono showed that I still had a little bit of fluid but, nothing big. He told me that my next period may be a biggie. I didn’t really like hearing that but, if my next period is last bad one then it is all worth it. I also, have to go back for my next checkup in three months.

Thanksgiving was great, it usually is my mother and father-in-law cooks. It is always good but this year my f-i-l cooked the stuffing/dressing. Anyway, it was really outstanding! I did completely go off of my low or no sugar and low sodium diet… I had been doing really well on it too. Since we got back from my grandmothers funeral, I have been able to keep my blood sugar in check. Even after the wonderful and bad for you food it was down to normal two hours after eating.

After we ate, I picked my HFA (high functioning autistic) son up at the airport. I have written about him several times but, I don’t think that I have ever addressed his kleptomania on my blog? Ferd left a comment on my last post and he too has an autistic child. Anyway, he had ranted about the trials of being a parent of an autistic child here. All autistic children are different and they can have some very strange habits. My sons is never being able to understand “yours” and “mine.” Well…he gets the “mine” part more, you can not touch his stuff. We have tried everything to make him understand but, I think that it is more of a kleptomania thing. Anyway, I commented on Ferd’s blog about it and the only solution that we have come up with is to get a really big gun safe. We have two fire safes but, you can only put so much in them and nothing of any real size.

I will post more about the visit later. I hope that everyone had a wonderful Thanksgiving!

A Mothers View On Autism And Michael Savage

Last night, I had trouble sleeping so I came down to watch some TV. While flipping through 500+ channels of nothing, I came across the Larry King show. Midway through the show, the topic was on Michael Savage on Autism Fraud. I had never heard of Michael Savage, he is a conservative talk radio host. On his July edition of his show he claimed that autism is “a fraud, a racket.” Well, being a mother of an autistic child, this did not help my sleep issue one bit! Here is a clip from the show.



Clearly, he does not have a child or close family member with autism. Here is one of his quotes that I found on MediaMatters.org among other sources. Autism is “a fraud, a racket. …I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean that they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’” This reminds me of a time when I was pregnant with my youngest and I was the grocery store with my daughter and my autistic son. I had been working all day (I was still working full-time then) and the kids had been at the sitters. I avoided taking my son to the grocery store whenever possible, he did not like going and almost always had a meltdown of some sort. My husband was working on a project; otherwise he would have been watching him. Looking back, I think that it was either the lights or the humming of the refrigerator cases that set him off? Anyway, back to the grocery store. Almost as soon as we got in the store, he started throwing a fit. Since we had to get some groceries, we tried to ignore it and just get done what needed to be done. When we were just about finished shopping we were stopped by a man (a redneck in every since of the word), he looked at me and said “It looks like someone needs their britches busted!” I was completely taken off guard. Completely irritated with the entire situation and not to mention pregnant and hormonal, I did something that I shouldn’t have but…I did. I looked at him, pointed my finger directly in his redneck face and said “You…need to mind your own damn business!!!” His first reaction was just a dumb shocked look on his face, like lady I know you just didn’t tell me off. Then, he looks at my daughter and says “no wonder he acts like that.” I had never done that before and I haven’t done it since. But it seems to me that this redneck and Michael Savage are cut from the same cloth… Below is a clip of his show.



This one is from a later show.



In one of the clips he says that this is some kind of racket for funding for social services (such as Medicaid) and extra services in school. As long as our son was living with us, he never got any extra services our private medical insurance and our money paid for everything. As far as school goes…that debate is still up in the air since Texas school are one of the worst as far as Special Education goes. Then he goes on about how now autism is not just autism any more that it is now called “autism spectrum disorders.” Well, here is the definition of ASD’s from the National Institute of Mental Health.

Now, do I think that there are children over diagnosed with autism and other disorders? Yes, I do but I also believe that there are just as many if not more under diagnosed with autism. It wasn’t until my son was 7-years-old before he was diagnosed with autism. It is not that he wasn’t autistic before that; he just wasn’t the typical non-verbal autistic that is the “Kanner autistic.” He has always been autistic. “Normal” babies do not need to be tightly wrapped in a blanket (like they do in the hospital), put in a swing (without the swing being turned on) and then a vacuum cleaner be turned on for him to go to sleep. That is not something that a non-autistic parent would ever have to do. Most babies would rather be cuddled and rocked to sleep. My view is that people like the redneck in the grocery store, Michael Savage and others like them just, need to shut up about things that they know nothing about!

Long Vacation...

I have not really been on vacation, just sick and taking care of my autistic child. Quite a bit has happened since my last post. It started out with that terrible cold that was going around in mid March, my youngest and I both had it for over a week. When we finally got over that, we took a trip to see my dad and our autistic son. We had a good visit but we were still at the end of our colds.

At the end of March, I finally got a hearing for my Social Security. I applied about two years ago; got denied, hired a local Social Security Disability law firm, got denied again and then finally got the hearing with the judge. At the hearing office I had to go through security with the security guard, it was a bit like going through security at the airport. Had I known this, I would have carried my usual airport things; a tiny wallet (with my ID, bank card and insurance card), then wore a pair of Crocs. But nooo…I had a purse full of all kinds of stuff. I had to dump everything out and let them go through it, then get wanded. When we finally got to the hearing room there was the judge, court reporter, a job expert and (via the phone) the social security doctor. First the judge asked me a lot of questions about how I felt and what was wrong with me and then about my various careers. After explaining to him what I had done at my past few jobs that spanned back about 15 years, he told the “job expert” that she was no longer needed. Then came the ss doctor on the phone…first he didn’t think that my Chronic Kidney Disease is as bad as it is, then came the Chronic Fatigue Syndrome…he tried to say that it was not a “text book case” of CFS (my attorney came back with asking the doctor if there was anywhere in any of my doctor’s reports that said that I was not chronically fatigued? The ss doctor said “no”) next was the Fibromyalgia; somehow my pressure point test did not wind up in any of the reports? When the hearing finally ended, I left with no answer for my SSDI (no yes, but no “no” either)

The day after the hearing I went to see a Rhumotolist, to get diagnosed by an “expert” for the Fibro. I have been a little reluctant to see a Rhumotolist, mainly because of all of my goofy medication allergies. But, to my surprise he was really good! Due to my allergies and CKD there are a lot of pain medications that I am not able to take, he came up with Ultram which is aspirin based and does not have the compound that is in Darvocet, Percodan and most others that end in “cet”. He agreed that I do have Fibro and hopefully…this will help in my SS case.

Then finally it is the end of the school year, yea!!! My autistic son flew out to stay just a little over a month, he has been doing this since my mother passed away. With my mother gone, my dad doesn’t always have someone to watch him while he is working. Even though he is 15 and high functioning, you cannot leave him by himself. This summer, we had a really hard time with him. I think that his Psychiatrist is on the “conservative” side and does not have him medicated enough. Most of the time that he was here this time, he did not go to sleep until after 2:00 if he did sleep at all. He has always had a problem with sleeping, before we started him on medication he would “maybe” sleep for about a hour a day after the age of three and even before that he rarely took naps. It would not be so bad if he would stay in his room but, he wanders around (even outside sometimes) and gets into EVERYTHING! So, I had to say up with him and not take my evening medications most of the time he was here. By the time he left to go home, I was completely exhausted.
About getting into “EVERYTHING”, I do mean everything. He got into my husband’s clothes (he wears an adult XL and my husband wears an adult M, not sure why he does this? He even gets into my clothes???) he found my daughters artwork that she did in high school that has been missing since 2003. He likes to draw and has tons of his own paper, colored pencils and markers but, he got into and used up my brand new set of Prisma color markers. Everyone in the house’s stuff is free-reign but, he will have a fit if you touch his things. We are just about at our wits end, we have tried everything that we can think of to teach him that; you have to ask to use someone else’s things and you don’t steal. It is not that he does not have the ability to learn this but, it is like he is a clepto maniac. The things that he takes, he does not need like with the markers he had his own. Please post any suggestions or things that have worked for you if you have dealt with this or the sleep problem.

Autism Speaks And Five for Fighting Raising Awareness

Yesterday while doing my daily blog reads, I came across a great post on “All the world’s a stage” about a Five for Fighting donating to Autism Speaks. As many of you know, I have an autistic child. Fortunately he is a verbal autistic. As with all autistic people he has his favorite hang-ups’: anything with wheels (cars, trains, airplanes, etc.), Lego’s, commercials, infomercials and music. One of his favorite commercials is the Rock Autism commercial on VH1. He is amazed that the musicians that he likes to listen to know about autism and have a commercial to help find a cure. He is also a huge music fan and he has several CD’s from Five for Fighting. I think that he has more CD’s now than I do.

Please take the time to go to What Kind Of World Do You Want and click on the video. EACH TIME the video is viewed; Five for Fighting will donate $0.40 to Autism Speaks. As much as I despise chains (chain letters) I despise AUTISM even more. So, please pass this along. Help find a cure.

MIT reverses autism in mice

I recently received an email with the article below. One thing that I found interesting in the article was the following quote "Suppressing it can counteract the effects of Fragile X Syndrome (FXS), the leading cause of retardation and a genetic autism, MIT said Sunday." The "genetic autism" was what caught my eye. Is the rash of autism not only in the US but all over the world "genetic" or are all of these children just predisposed to autism anyway and develop it because of pollution and the mercury that is in immunizations? Maybe it is just all of the above? There are several states that are major polluters and have a huge clusters of autism cases are New Jersey, Texas and North Carolina. A cure to autism and other diseases like this need to be found, I hope that this article will help with this.

Autism Reading Program

We have a son with Autism; he was in school here in Texas for 5 years. He is high functioning and is verbal. Yet, the school's (he attended 9 schools here) here in Texas could not do anything with him. When he was 10 years old we sent him to live with family in New Mexico. At the time my husband had found out about a program in New Mexico for children with Autism and with us getting not being able to get him the services that he needed here, we felt that sending him to NM was the best thing. He was not reading at all, he could recognize words but could not "read" them. The school's and the local ISD "professional's" told me that he would never read at best he would sight read.

Well, after he started school in NM we found out about the Wilson Reading Method through a family member who is a Special Education teacher. He started the program at school and a home with a tutor. WOW, viola!!! He began to read, I mean really read and understand. He is now 15 and reading almost at a 4^th grade level. Hopefully, some day he will be reading at the level that he should be at for his age. But, even a 4^th grade level is a lot better than nothing at all.

Here are some links that I have found for the Wilson Reading Method. I just learned that it is used for dyslexia, poor spellers, ESL (English as Second Language) students among others.

• Wilson Language Training
• LD Online – this is a really good website for all kinds of info and lots of LD’s
• IDA Discussion Forum – From “The International Dyslexia Association”

I will add more links as I find them. Hope this is helpful =)

Here are some new links:

• FAPE defined
• This is a really good link to Autism and IDEA information from the Autism Society of America