A Very Good Cause

A very good friend of mine sent me an email today. She has a friend, a very cute young boy, who has Spinal Muscular Atrophy (SMA). She is asking her friends to sign a petition to help get funding for treatment and a cure for SMA. I have signed the petition.

Here is some information about SMA from the petition website:

We need your help to move landmark legislation through Congress that will allocate federal resources to non-profit and research organizations focused on finding a treatment and/or cure for SMA.

SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
SMA is the #1 genetic killer of children under the age of 2.
SMA is estimated to occur in nearly 1 out of every 6,000 births.
The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
There is currently no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

Please, take a moment to sign the petition. Petition Link

wow -- to barlowlf

To Barlowlf,

Thank you so much for leaving the comment on my blog. Your comment brought me to tears--in a good way. I emailed it to my husband at work. I never bother him at work unless it is something important. He had the same reaction.

It was a big deal for me to share the diagnosis here. I felt it was so personal, and since it wasn't my diagnosis, I refrained talking about it while we were in limbo.

Thomas was absolutely insistent that I share the story. It's funny because there are things he doesn't want me to share on the blog. This, he did. He wanted to reach out.

Little did any of us know, someone would be touched so quickly -- or even find our post.

If you continue to read my blog, could you please let us know how your son is doing. Who knows if your son has this, but I'm thankful that you have something to go on. I'm glad that Thomas's story gave you some direction. He will be pleased. This is exactly why he wanted to share.

Best wishes, and you'll be in our thoughts and prayers as well.

Frankie
whisperingwillow @ charter . net
feel free to email me

Even More Bad News

Thomas was diagnosed yesterday with Juvenile Myoclonic Epilepsy.

I have not blogged about this--the events leading up to this, because I assumed Thomas would feel it too personal. I was wrong.

Sometime around March, after my dad had his heart attack, Thomas asked me if my body ever jerked. I told him sure, as I'm falling asleep. He asked if it ever jerked or jolted any other time. No. He expressed to me that sometimes his body did that.

I took it as a red flag, but we did not have time to do anything about it.

Fast forward to the beginning of June, when I happened to be in conversation with a neurologist. The doctor was describing the onset of Juvenile Myoclonic Epilepsy. He said it starts out with "jerks" of the body at puberty. They typically happen in the morning, and it is typically the upper body, specifically the arms and head. The minute the doctor said this, the tears poured down my face. I knew. I told him that my 12-year-old had been complaining of the jolts or jerks. He said get him in for an EEG.

I scheduled and EEG immediately, but we were unable to get in until yesterday.

So all this while, during the sadness of dad's death, our own medical emergencies, in the back of my head I was worried sick that my baby had epilepsy. I did not struggle with this alone, I shared it with my best friend, but it has been very difficult.

Yesterday was the big day. Bob, Thomas and I were all three very cranky. We drove to a town an hour away (because we don't live in civilization, and there is no neurologist here) for his EEG. The process took about an hour and a half. The tech took a red grease pencil and tape measure and measured Thomas' head, placing red marks. She then attached the electrodes, 23 of them, to his head. That took awhile. Then the test started.

She said it would be a good thing for Thomas to go to sleep. He did. We sat and watched, and could see the EEG on the computer screen. I had no idea what I was looking at, but I did realize there was an awful lot of activity for a child who was asleep.

At one point in the test, I felt a coughing spree coming on. We were not supposed to talk, and I because I also was having difficulty breathing and I felt like the walls were closing in, I stepped out. Thomas was in safe hands, with his dad and the tech. I went outside for some fresh air, got myself a bottle of water, shed a few tears, composed myself and went back in. Oh yeah, I took a Xanax, too.

When I got back in, Thomas was awake and the tech started the strobe light portion of the test. Apparently, some people with epilepsy are photo-sensitive. Pretty soon the test was over and we escaped for lunch.

While at lunch, I broke my tooth. The top third of the back half of one of my bottom teeth just crumbled. Never a dull moment. Will see my dentist today. That was my root canal tooth -- so it was dead anyway.

We drove back to the clinic for the appointment with the doctor. All three of us were scrunched on a bench waiting for the doctor. I personally had a difficult time breathing due to stress. Thomas was tense and tight as a board. Finally the doctor came in.

My heart sunk when he started talking. He was asking all kinds of questions and not getting to the point. I knew it would be a diagnosis we did not want. Bob and I exchanged a look, because he knew, too.

He asked about learning disabilities and ADD. I don't know about ADD, we've never felt the need to get a diagnosis. I do know Thomas has issues with focus. As for learning disabilities, he was diagnosed as twice exceptional: gifted with learning disabilities. I have never shared that diagnosis with Thomas because I knew the learning disability part would crush him. His disability is processing speed. He does have central auditory processing disorder, which he knows about. So I um'ed, er'ed my way through that conversation, because I wasn't going to blurt out LDs right then. It didn't really matter anyway.

The doctor then said that Thomas had a very small airway. He asked us if Thomas snores, which we said yes. He was going to make a referral to the ENT doctor. He explained he wasn't an ENT, but that he would probably have to have his tonsils out to open up his airway. He suspects sleep apnea with Thomas. He thinks the ENT will want a sleep study.

So then he got to the heart of the matter. In a round about way, he gave us the diagnosis of Juvenile Myoclonic Epilepsy, JME. He started rattling on about medications when Thomas interrupted him. Thomas innocently asked him, "So are you saying I have epilepsy?" The doctor said yes. Thomas's body just went limp. I don't think he heard a lot after that.

At this point it seemed the whole conversation was rushed. I was feeling confused and also I was not thinking clearly enough to ask questions. Bob took over, thankfully, because my brain was shut down. The doctor prescribed a medication.

I was able to get in that Thomas goes to summer camp on Sunday, and should he start the med now or wait. Now. And there are no restrictions on what Thomas can do at camp either, as long as there are lifeguards during swimming and safety equipment on the rock climbing walls and high stuff. There is.

The doctor dropped the ball on explaining epilepsy and what exactly this diagnosis means to Thomas. The only thing he really said to him was that there are far worse things he could have. And there are. But to a 12-year-old, and his parents, this isn't so great. This has life-long consequences. What has started out as jerks has an 80-percent chance of developing into grand mal seizures. However, this is the most controllable form of epilepsy. The chances of a normal life are great.

Normal--define normal. Thomas will not be able to fly an airplane. Thomas will not be able to join the military. The chances are good that his college education will be paid for due to his disability. Many family members have received that benefit. And yes, he is officially disabled.

Epilepsy is no stranger to us. It runs in Bob's family. It's nothing to be ashamed of. Society has long put attached a stigma to it. "Have a fit" is a common expression that stems from epileptic seizures. I thought Thomas would want this kept private. He doesn't, because he wants the world to know that it's just misfiring of the electricity in a brain. That's all. It's a short circuit, if you will.

When we got home yesterday, we talked about what would be likely: the development of grand mal seizures. We talked about the few limitations he would have in life. We talked about the need for quality sleep on a nightly basis--no more staying up late. It was all very overwhelming to Thomas, and he ended up crying--a lot. We all three snuggled in mom and dad's bed, and our puppies joined us. In between tears, we had comic relief from our puppies.

We are on our way to finding our new normal.

This year has just sucked. I don't know how scared I should be with that ENT referral. Thomas isn't looking forward to a possible surgery. Neither am I. We're still mourning the loss of my dad, Thomas's Grandpa Charlie. We still miss our Jerry Lee. We still seem to have this black cloud hanging over our heads.

But we are all thankful that we have good health care, that time will heal all wounds, and life will go on. I worry about Thomas, my 12-year-old boy, and the amount of trauma he has been through this year. It's so much. I'm learning, though, that the has good character, he's remaining positive and accepting things. He's stronger than I could have imagined. He cries when he needs to. He lives in the moment, enjoying time with his friends. He's typical 12, moody and establishing his independence. I am very proud of him.

As he told me last night: I have epilepsy, mom, but it doesn't have to have me.

I think we'll survive.

Making the Rounds...

This is making many of the blogs that I read. I'm Just Sayin' asked some questions of homeschoolers, and I decided to answer, too.

1. What was your motivation for homeschooling? Was it based on religious reasons? Was is it based on curriculum - did you want more freedom in choosing what your children were being taught? Was it based on socializing - wanting to have more control in the people with whom your children came into contact with? Was it based on logistics - the nearest school being 20 miles away? What made you finally decide to go this route?

We finished our public school career at the end of the second grade. We homeschool Thomas to meet his emotional and educational needs.

2. Don't hate me for asking this. How to you handle socialization? What steps do you take to make sure your children are around other children and adults? Are you active in a home school group? Do you spend a lot of time at church activities? Maybe you utilize the local Y for activities and they meet friends there?

Starting at the bottom:
No local YMCA, otherwise we would be there.
We are Christians, but we do not go to church. (And I usually do not blog about religion as I feel it is a private thing.)
We are members of a homeschool group -- rather, were. I will not be renewing this year. The homeschool group only does their weekly co-op, and that's just not for us. They're very restrictive, IMHO, that the mother must stay and teach or help, and there's no say in the classes. Nope, too much like public school.
Socialization around adults: Thomas goes with us everywhere, sees us with friends, co-workers, neighbors, etc. He was the only child member of our local train club, which sadly recently closed down. He was in the thick of things when my Dad had his heart attack, at the hospital daily for two weeks straight, then again at another hospital and VA until my dad passed away. He was not afraid to ask doctors or nurses questions, even though he's shy.
Socialization with children: Ceramics class, used to be in Cub Scouts until he aged out, and he hangs out at a local after-school hangout that is run by all the churches in our town. He plays with all the neighborhood kids, which vary widely in age. He has friends from public school that he still sees on occasion. We are friends with one homeschool family that we get together with every other month or so. Thomas is going to a week-long summer camp next week. Gulp, that's coming up fast!
I'd say the only difference between Thomas and a public-school kiddo is that he isn't around kids during school hours. Instead, he gets to be around two puppies and two cats and his mom. Dad visits on the lunch hour.
I do worry about socialization. There, I think I'm the only homeschooler that has ever admitted that. HOWEVER, I would worry if he were back in public school. Every parent wants their child to have a good friend, or a couple of good friends. Right now Thomas has "friends" but his GOOD friend moved away.

3. Do you use the public school system for any part of your child's routine? Some children here come to the school for band or chorus, or maybe for science class. Do you send your child to the public school to take advantage of any of their programs?

No, and no thank you. In our state, we are allowed -- I think it's $60 for curriculum. I have never, and will never, apply for the money.

4. Do your children begin and end school at the same time each day? Do they have a strict schedule, at least as far as waking up and reporting to the school area of your home? If not, when/how will you transition your children into following a more rigid schedule - awaking at the same time each day so that they can follow a routine outside of the home like for college and work?

No strict schedule. We usually wake up when we wake up. I do like school started by
9, and our day IS school not other stuff. We are done when we've finished that day's work.

I am not worried about following a routine for college and work at all. You do what you have to do -- go to bed, set an alarm -- piece of cake. We do that from time to time, say on vacation or when visiting an ill loved one. It works.

5. How many spelling bees has your child won? Oh, I'm kidding. We all know most of the recent national spelling bee winners have been home schooled children. I just wanted to throw a little funny in there?

My child can't spell. There, I said it. He knows it, too. He isn't bad, he always hits his grade level on standardized tests, but he's no spelling bee competitor. Now if they had a science bee, he'd be up there.

6. Do you have a sense of humor? It's probably a little late for me to ask that but...

Yes, I have a sense of humor. It doesn't show through in my writing, but I have a wicked sense of humor.

7. Where do you find your curriculum? Do you shop for it and order it? Do you create your own?

Everywhere. Reading blogs, keeping current on the Rainbow Resource catalog, reading homeschool boards, talking with fellow homeschoolers. I create my own on occasion.

8. Do you have any worries at all about teaching your teenagers the higher level math and sciences? I, for one, could not teach chemistry to my children but I could probably teach them calculus. Is this a concern for you?

Chemistry? Oh, yeah, I worry about that. But Thomas is lucky, he has a dad who is really good in science. However, no, I do not worry about teaching upper level courses. If I can't teach something, and Bob can't, we'll get a tutor or do an online class or something.

9. What bothers you the most about the reputation home schoolers have? What things do you hate to hear people say about you for your choice? I really hope you don't say that it's my previous post.

That we're all the same: Denim-jumper wearing fundamentalist Christians. We're as diverse as public school families. Many of us are very open minded about life and people.

10. Be honest, do you, at least in your mind sometimes, judge those of us who choose public school? Do you ever think we are making a bad choice for our children? Are you vocal about that disapproval?

No, I do not judge those who choose public school. Ever. I did it! What I do judge is PUBLIC SCHOOL itself, and I throw comments about teachers around, which I shouldn't because I know there are some great teachers out there. There are some awful teachers, too -- been there, done that. There are many good things about public schools, but there are a lot of problems, too.

11. Is "home school" one word or two? I've seen it both ways. With spellcheck, it shows it as ONE word when used as a verb, but two words when used otherwise. Please enlighten me.

I always write it as one word.