Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.
Saturday, March 28, 2009
After the last post, I really hate to change the direction and emotional energy of the blog, but this is supposed to be a real account of the kinds of difficulties the Unique Family goes through. So, today, I am going to cover an area of my life that is unfolding even as I write this.
A while back, I posted an audioblog that attempted to reveal some of the turmoil that has surrounded my personal life for the last several years.
I am talking about my husband and the multiple areas of his life that we are finding out are stunted and deformed.
When I wrote his Update, Update, Part 1, I focused on the epilepsy and sleep apnea, and only lightly touched upon the depression into which he slips every once and awhile.
Today, I am going to tell you what I think is going on. Now, I am not a doctor. We haven't seen any doctors to confirm anything yet, but if there are any parents of children with autism, adhd or learning disabilities out there reading this, you know a problem when you see it.
For years before I met him, my husband put up a very good front for his family and friends. He projected himself as a friendly, outgoing, funny, computer entrepreneur. He had loads of friends, loved to eat out and go to the movies. And yet, certain things didn't line up. Little stories would sneak out now and then.
Like his fear of needles. No one loves them, but we would not jeopardize our health to avoid them. He would.
He seemed to be indecisive. Any decision took so long to make and then he second-guessed himself two, three or more times.
The people closest to him didn't seem to be going anywhere. For all his "out-goingness" and entrepreneurial drive, he picked people that weren't progressing or growing to be his closest friends.
His family, openly verbally abused him, calling him very degrading names.
Still, he seemed to be looking positively into the future when he met me, and he wanted my children and I to be a part of it. He won me over with his sense of humor, his loyalty and patience, especially since he walked into my life when I was on a downward spiral with my health.
But,the truth is, the whole thing was a facade.
He is not a successful businessman.
He is not a person who can lead a business or a family.
He cannot handle financial responsibility.
He does not have many friends and frequently offends the ones he has.
He is not respected at his job.
I could go on, but, one, I think you get the idea, and two, seeing it in print is depressive.
But it is the truth.
The past several months have been one of major enlightenment for me as the house of cards slowly fell apart. Financially, physically and emotionally.
When I did the audio-blog and even the post about going on a Faith Walk, it was in the midst of understanding that the task before was not small. It was a monumental undertaking that might drain everything I had in me in order to see it through. I faced the fact that my marriage was not going to be what I hoped it would be, followed by a little trickle of fear that hissed, "Run for your life!"
Today, almost a month since the beginning of the Faith Walk, I'm ready to state some truths and affirm the mission I intend to embark on as long as I can.
1. My husband is a survivor. He has survived verbal, physical and sexual abuse.
2. My husband has epilepsy and sleep apnea. This may have affected his cognitive functioning.
3. My husband may have a learning disability.
4. My husband suffers with emotional disorders, specifically depression and anxiety disorder.
I believe that my husband is not a malicious, mean-spirited person, but that for so many years of not getting the help he needed, as an act of survival, he uses deception, lies and fantasy to cope with his deficiencies. He lies not only to me, but to himself.
I believe despite all of his difficulties, he can feel love and does love me and my children.
I believe we are living in the best of times to get help for the ailments/disorders he has.
I believe intellectual and mental disabilities need to be treated with dignity, respect and kindness. Negativity only reinforces the need to deceive and hide.
I believe that the future will be a rough one. I cannot guarantee that I am cut out for this. I respect my right to say I can't.
I ultimately believe that love is the ultimate key to solving these problems. Without love, I turn off the ability to seek information to alleviate them. Without love, I cannot act with compassion. Without love, I manipulate and abuse, making me no different from his other abusers.
I don't know what else to say, except to ask those who pray, do so. Those who believe in positive energy, speak words of affirmation about us. Those with similar knowledge or life experiences, speak freely.
I appreciate everything and anything you do.
Photos were taken from Google Image searches.
Final painting is the work of d.Lawrence Coyle
Tuesday, March 24, 2009
I am going to have to start a section in my blog called "People I Met Through Twitter."
Maybe, it will be on the new blog site I am currently slaving away on day and night. If you haven't read Momentous Decision, click here to read it. It talks about my idea to start a new blog. The end result is not exactly like I posted, but it outlines the spark that ignited my dream of new bloggie directions.
But this post is about a wonderful company I befriended on Twitter called Smart Knit Kids. Actually, the company is called Therawear and one of their products is called Smart Knit Kids. Their Twitter name is @smartknitkids.
Twitter is a great invention and businesses are getting on everyday. I think that is wonderful, but if you are not willing to do what @smartknitkids did, come to the front of the classroom, listen and learn.
First, even though there was a logo (everyone wants to tell you to put a face; not necessary), the person tweeting came across as real. They laughed (LOL!) email-style, they conversed and then presented a product I might be interested in. They explained the benefits to me; how it was a product specifically made for my children's sensory needs.
Next, they said, "We would be happy to send you a sample."
Hello? Something FREE? Yes, we love that. So, we exchanged information through a DM.
I was expecting a pair of socks. In less than a week, I got five. Two for each child and one pink pair for me. (Now, pink is not my favorite color, but I was intrigued.) The package came by UPS and included an handwritten note.
Okay, that blew me away.
But, what was better, was that their product lived up to what they said.
My oldest, who has Aperger's immediately put them on. Lately, he has a thing for socks and I am always looking for good ones. My youngest son, who has all manner of podiatric problems and is always complaining of ill-fitting socks and hurting feet, tried on the Large, but really needed the Xtra Large. That fit perfectly.
Well, you know I have to have customer feedback. The exchange went something like this:
"I think the large is too small." - young son
"Well, more for me, then." - oldest son
"Hey!!" - young son
"Here is the xtra large for you. How is that?" - ever-vigilant Mom
"Oh, that is much better. Perfect." - young son
"So...how do they feel?" - worried Mom, who is accustomed to rejection.
"They are fine." - young son
"Yea, just fine." - oldest son
Now, that may not sound like music to anyone's ears, but in my house, that is a rave review! Neither one of them gave them back or took them off. In fact, three hours later as I write this, they still have them on.
SmartKnitKids Socks 001
Originally uploaded by judielise
Next, I visited their site. I was a little shocked. It was your corporate-looking website with an online store that I have probably Google-searched passed many times. But, I knew someone in here. Her name is Rose. She sent me a note with her name on it, so I was comfortable. I found the socks, priced them and prepared to place our first order. And, their socks are value-priced compared to other specialty sockwear!
Now, some may say, well, Judi, of course, you write a good review because they sent you FIVE pairs of FREE socks.
Okay, you are missing it. They didn't have to do that, I didn't have to even talk to them online and this whole thing could not have happened. I could be blogging about something else, but I am not.
I am blogging about a company that wasn't afraid to get to know me, the customer, before they sold me a product. Then, their product lived up to their word. In other words, there was a connection. One of honesty and friendship, and a sale.
In my new blog, I want to write and discuss all about these kinds of connections. Big and small. Online and off.
And, Therawear/Smart Knit Kids will be in there.
Thanks for not spamming me and thanks for making a quality product. And, this is the only time you will see a posted picture of me in pink socks! Only you could get me to do it!
SmartKnitKids Socks 002
Originally uploaded by judielise
And, of course, Mom has to clean up.
Originally uploaded by judielise
All pictures are publicly available on Flickr
Saturday, March 21, 2009
Just a short message today.
The kids have to get haircuts today and we need to do grocery shopping. I am starting the third week of new classes and the work will begin to pile up from here on out. I love how teachers lull you in the beginning and then BAM!, read 8 chapters and give me 2000 words on this inane subject written in APA style.
But I digress.
I just wanted to let everyone know...WE HAVE HEAT!
Yes, our homeowners' insurance office sent someone over to look at our poor old furnace. It turned out to be a busted thermostat (!!) and a connection that needed to be reset on the furnace. Another person told us that the gas valve had died and the whole furnace needed to be replaced...to the tune of $1800.
The guy from the insurance told us that even though it is the original furnace: "you know, they don't make them like this anymore and you have more life left to it."
In other words, the furnace is fine. *Sigh*
All I can say is paying the $335 was better than $1800...and my Popsicle Toes have thawed out.
Friday, March 20, 2009
I had to reprint this animation. Found it on Web Strategy by Jeremiah. It is such a funny take on the Twitterverse, of which I am a serious twember (Twitter Member).
I can't tell you the people I have met on Twitter that now are a serious part of my life. I have mentioned some of them in other posts. I hope to be able to talk about more.
So, now, sit back and enjoy this cartoon break.
Wednesday, March 18, 2009
Two for one.
I don't often post two times in one day. Even, though I may often have more things to say, I try to keep the posts down to one a day. And, they have gotten shorter and more to the point (I hope!).
But, today, I had two things to say. One was announced in the post below this one. The other is to finally finish a series of posts regarding my family. This post makes Updates, Updates, Part 5. I finally have to talk about myself.
Sometimes, this is very easy. I feel I could talk about myself all day. Not sure you want to hear it, but some days I am so in touch with who and what I am, I could go on and on. Other days, I question my reasons for being, my motives, my ever changing and unenlightening emotions, etc. Basically, some days, I don't know who the heck I am or what the heck is going on.
But in Updates, Updates, I usually focus on the reason each member is a part of this Unique Family. When it comes to me, I am a member, because, well, I was the one who heard the phrase in my head, that fateful morning, when I didn't think I could go on anymore. I heard "You have a Unique Family." And, it was I who had to place myself in the Unique Family first and then bring the rest.
Without sounding too psychological, I had to see myself as part of something unique and wonderful, even when, on the surface, it didn't look that way.
I certainly didn't feel like I wanted to be included. Certainly didn't feel like I would write about it, either. And yet, both of those things happened. So, I will try to write about myself and what I face every day. I have struggled with some limitations from early on and others surfaced as I got older.
For all I can find out, I was born visually and partially hearing impaired.
I didn't find out until I was 37 that I have degenerative myopia. That is a fancy way of saying my vision never stops changing. I usually have to change my glasses every year or so. It is at the point now that I have to use assistive technology to get things done - CCTV, large 22” monitor on my computer, large text and icons, text readers and speech to text synthesizers, etc. There are other items I would like to purchase, like an Optelec Farview. This would help me outside of the house. I still have a driver's license, but I don't drive much, and never on the highway. My life and the lives of others are too precious to me.
I have also learned that my hearing loss is not just about being partially deaf. I have permanent nerve damage in my inner ear, which has caused vertigo to be a permanent part of my life. I had a few episodes of it as a child, but after 2006, it decided to show up every day. There is therapy, and I may try it, but for now, three different meds keep the world from shimmying, and the nausea and migraines at bay.
I have mobility impairments (herniated discs - 5 in all) as well, but most days this is hardly noticeable. After being practically bed-bound for a year, I had back surgery in 2005, that returned me to the land of the walking, but, no hikes, long walks or drives for me. I can drive 20 minutes one way, but the return trip, I will pay for it. Anything longer, someone else is doing it, and even then, I will stiffly get out of the car.
I have an allergy to dust mites that I didn't know about until last year. Due to this allergy being untreated all of my life; I also suffer with multiple chemical sensitivities and a weakened immune system. I am getting stronger (I made it through this whole winter without one cold, flu-like episode or bout of sinusitis! Not even a runny nose!), but I still can have violent reactions to fragrances, everyday cleaning supplies and chemicals, and dust that can halt my activities in a second. I don't need an epipen, but I will always have Benadryl, Zyrtec or Allergan handy.
I continue to battle diabetes through diet (vegetarian/vegan) and herbal supplements, but have had to start taking meds for hypertension.
Since I have been treating my allergy and the inner ear problem, I have not suffered much with bruxism, TMJ or trigeminal neuralgia (TN).
I have survived and overcome Bell’s Palsy, RSD/CRPS, optic neuritis, and a 40% disability in my lower left leg (due to a fractured tibia that went undiagnosed for 3 weeks). I have had seizures, multiple faints and chronic fatigue syndrome-like symptoms since my late 20s.
To look at me, you wouldn’t be able to tell all of that. In fact, if I go back to wearing contact lenses, you won’t even be able to tell I have a vision issue. I am truly a person with invisible disabilities.
If you read the post on "Learning to Be Less Than Perfect," you know that during my childhood, most of this went untreated. As an adult, I didn't really acknowledge my weak state of health even as I was staring disability in the face. I continued to work and ignore my health needs, trying to be stoic like my parents. Even after receiving disability, I continued to try to work; at home and in temp jobs. I only stopped in 2006, after the bout with Bell's Palsy left me shaken, broken and scared. I had to pay attention or no one knew what would happen next.
I thank God, today, for that life-altering experience. I would not be writing today, starting an online business, making the friends I have, if I had not faced one of the most difficult periods of my life.
Here I go again, making a really long post. Sorry.
So, now you know a little about the final member of the Unique Family. The one God chose to bring these stories to you. Perhaps this is one of my purposes in life. I hope it makes a difference in yours.
P.S. While looking for a pic for this post, I came across this quote from The Jungle of Life:
It is not the mountain we conquer but ourselves. - Edmund Hillary
After this post, I am going to begin another blog.
There it is. That's the big decision. Kind of a let-down, maybe? Well, I took all night to decide this.
Last night, after thinking long and hard about it, I decided to start a blog related to my business. It will be self-hosted through my hubby's hosting company and it will chronicle An Extra Hand Serivces' rebirth; its twists and turns, stops and starts. I also want to have another platform for announcements, giveaways, business and financial tips and motivational, encouraging lines for businesses, big or small.
What about this blog, you ask? It is going to remain exactly what it started out to be: the events in the life of the Unique Family. I don't want to water down the message of how we live with chronic illnesses and disabilities with "Hey, click here for this or that!"
I know, you are thinking, most people wouldn't separate out their business from their personal. Well, for me, this blog has always been about making friends, sharing stories, baring our souls, laughing at pictures and comments of encouragement. And, I want to keep it that way. It is dear and precious to me. It has helped me get to the place that I can even think about working again on a business idea.
The new blog will be about business; running one, setting up one, getting customers, hitting roadblocks and overcoming them. I hope to have guest bloggers, who will give tips and inspiration. I will upload videos (not of me!-if you listened to my audioblog, you know I have no stage presence!) and have more of a community spirit to it. Of course, friends will be there, too, because many of you have businesses, so there will be an overlap.
Think of the new blog as the home office (where home may intrude a little!) and this blog as the living room, where it is all about the home front.
I hope everyone here will also come into the office every once in a while. You are always welcome!
Monday, March 16, 2009
I received my final grades today. One A and one A-.
Now, why do I look at that A- and wish it were an A? I mean, I came so close. I was at 94.73, but my final project fell short of the instructor's rubric, so I didn't make it.
I admit it is my mother talking. I had a seriously Type-A Mom, back before they had terms like that. If you brought home a 95, she'd say "why couldn't it be a 96 or a 97?" I once received a final grade of 99 in a biology class. A final grade! And, yes, she asked me (and the teacher, mind you!) why didn't I get an 100? No one had ever got a 99, and she kept pushing for that perfect grade. The pressure used to be ridiculous. It didn't help that my older brother graduated high school at 15 1/2. Being the middle child, I was expected to be as good, if not better.
I was the artsy, dreamy, talk to myself under the kitchen table-type kid. I sat in mimosa trees, smelling the blossoms and deciphered shapes in the clouds. I started out badly in school, nearly flunking 3rd grade.
Was I too rambunctious (old term for ADHD)or didn't turn in my work? Nope. I just talked too much! LOL!! I laugh at that now. I just couldn't stop getting involved with everyone in the class and finding out how they were doing. Well, my mother had a real good talking to me (in those days, that meant, spanking) and I realized that I wasn't going to master anything talking all the time. So, I buckled down. Real hard.
And, went on to be salutatorian of my middle school and graduate in the top 2% of my high school class. And, still, she kept pushing for more.
Little did she know that physically, I was pushing myself to utter sickness and exhaustion. I never missed a day, until one day, in utter pain, I just walked out the the school. Top grades and all, I needed to rest.
College proved to be disastrous. My eyes couldn't take it and my body seemed to be constantly racked with some virus or flu. To my darling mother's utter consternation, I never finished a degree. Five colleges and no degree. She was mortified. I really think I was relieved.
Now, I am the parent and I have two lovely boys, who are far from stellar in grades. My older Aspie son is average, not your savant Aspie in any way. My youngest son probably has permanent memory damage and has a speech/language deficit. I learned early on that I could not have the same attitude of my mother. I had to cut them some slack.
And, today, I realized that I have to cut myself some slack, too. I deserve to be okay with less than perfect. I deserve to turn the record player of parental disapproval off and enjoy my return to school.
On Twitter today, @steveKrull wrote this:
Some days I face #autism head on. Some days I hide from it and I don't know exactly why. Answers?
I answered with this:
But isn't that like life? Look at the hiding days as reflective. No one takes life on head on everyday. Even God rested. #autism
Boy, I am sure my mother is rolling over in the grave. But, when I look back on that tweet, I realize I have learned to take it easy. Perfect grades don't make perfect lives. And, all of us have something to offer, even if it is less than perfect. Some days we are gung-ho, and other days, we need to hide.
Hmmm, haven't I come a long way.
Thanks to autism and dysautonomia, and learning to love my dreamy, nurturing, artsy self.
Saturday, March 14, 2009
In the midst of every storm is a little light.
Today, is my young son's birthday and I invited several friends over. He never get to see most of them since becoming homebound, so having guests over always puts a smile on his face. He walked by just now and said, "It's not that bad, Mom. It's almost as good as going out." Bless his growing heart!
With the little I scraped together, I bought a huge picture cake from Giant and three Ultimate Meat Pizzas from Walmart. The first pizza was inhaled between Kirby, Kingdom Hearts and Supersmash Brothers Brawl. I got two slices from the second one(I still eat meat, even though most of my regular meals are veggie). Now, there are calls for the cake. I will have to make this quick, so I can get back to lighting candles.
Just to hear the sound of laughter and good innocent young teen ribbing felt good. The house wasn't too cold today and everyone pitched in and cleaned three rooms in half an hour.
Sometimes, good things happen in the midst of it all. Thank goodness for those times. I use them like finger holds, clinging to each meager one as I continue to climb.
Have you ever had something difficult and you couldn't even write it down?
I am going through some difficult times and I ended up using an audioblog for this post rather than write it. I wrote somewhere, that writing things down makes them permanent. So does blogging, audio or not, but it was just easier.
The Unique Family just got a little more unique. Unique, hard to handle and difficult to talk about.
Listen if you want. If I feel comfortable with this, I will make more.
Take care and hold on, regardless of your situation.
Friday, March 13, 2009
Okay, I have been tooting the business horn for a little while here. It is important in the Unique Family, due to our current precarious financial situation. But today, I am going to talk about the young son. If you have read Updates, Updates Part 2, you know my youngest son has a rare disorder of the autonomic nervous system. In simple words, it doesn't work properly. My explanation for this is usually, think about whatever you don't think about in your body; heart rate, blood pressure, etc. Okay, now imagine if all those things didn't work the way they are supposed to. That's Dysautonomia. If you want more information, click on the title of this blogpost and you will go to the only support group for children with this disorder.
Well, my son's birthday was Thursday and he is now 13. I have been commanded to not refer to him as a "boy" anymore, but a young man. I will try to comply without giggling. I can still remember chasing a soaking wet naked, shrieking body down a hallway!
Back to the point I was trying to make. I took a little bit of money and bought a Wii Fit. Yes, we have the Wii. It actually was bought six months before Christmas 2008 and stored away for the end of the year. Now, we have the Wii Fit.
Boy, was he excited. Everyone in the house did their balance testing (don't ask me about mine. That board and I are not on speaking terms right now.) and then he went on to try everything: step aerobics, yoga, walking in place. Whatever that board came with, he tried it before the night was over.
Enter the next day.
First, he couldn't get out of bed. Then he spent the entire morning moaning, groaning about his back, sides and legs. Sounds no different than an out of shape person, right?
Except that along with the stiffness came the crushing fatigue. He was not able to do anything past open a food packet for the dog. When we went out on an errand, he sat in his wheelchair the whole time and only lasted one store.
Such is the life of someone with dysautonomia. While I am grateful he can even stand up without fainting now, and he managed to do two sessions on the board, it will be days before he is back up to anywhere near normal. This was supposed to be a alternative to the mind-numbing physical therapy sessions we were trying for the last two months. Sessions that were boring, time-consuming (have to drive to the hospital) and produced no results.
And, doubling his main medication has not seemed to make any difference. *Sigh*
At least, the neighbors will have something to do when they come over.
Wednesday, March 11, 2009
Two or three blogposts ago, I announced that I would be resurrecting my old business, An Extra Hand Services. Poor thing, she doesn't even have a website yet! Not even a email. For now, the little company that could is just trying to breathe its first breath.
But, as God would have it, yes, I am mentioning God, good things have already begun to happen the very day after that post. You may call it the Law of Attraction or a superior power, it doesn't matter to me. What matters is the real changes and miracles that happened within a week.
Within this one week, people have just been walking up to me and blessing me with money. I don't know if they know our plight, but they come up with some silly reason, like, "oh, thank you for driving my daughter to school the other day, Here's $20.00."
Now, you and I both know a car ride for less than 3 minutes would never cost that, but she pressed it into my hand and walked away.
Here's another one. My brother, who borrowed some money from us last year and never paid, sent us a check. For the whole thing. $1500.
I know I don't have to put numbers out there, but numbers speak volumes. I want you to know this is real.
And, just yesterday, I discovered a service that I would love to offer through my newly re-birthed company. It is called Send Out Cards. This, to me, is just the kind of thing I like. Something that can make a big difference with just a little time.
Sent Out Cards allows you to pick a "real" card from over 10,000 cards online, personalize it, even upload a picture and then somewhere in Utah, they print a real card with your words and send it to whoever you want.
A real card, everyone. Not an e-card with an expiration date on it. A real card stock greeting card with a REAL stamp on the envelope. Of course, I am knocking my head and going, "Why didn't I think of that?"
In these days of Twitterific tweets, e-chain mail and suspicious links, wouldn't it be nice to get a real card in the mail? I sure think so.
I think it is such a great idea that I am offering to send a free card to 10 people who email me with their addresses. Or better yet, I will send it to someone for you. And then I will blog about the results and your comments.
Send your addresses to: firstname.lastname@example.org (this is a 2nd email address I have. Must tell you the idea behind that one day!) The first ten full mailing addresses I receive, I will send card to it. It could be to you or to someone you know needs to get a card right now. Tell me what kind of card you want sent. And, what you want it to say on your behalf. I just want you to see how easy this is. And, if I could do it, you could do it, right from your computer.
Also, send me your birthdays. Once I get them into their easy-to-navigate contact manager, I will never forget them again (I usually forget EVERY year!)
If there are any businesses out there that would like more information, please send an email to that address as well. I am setting up commercial accounts and am happy to be your back office and help you reach out to your customers, clients, prospects, friends and family. In these recessionary times, it will be appreciated so much more. A real card with real sentiment. There is even a way to send in your own handwriting so that you can "type" in your own handwriting.
An Extra Hand Services is proud to be a independent distributor of Send Out Cards.
View the video below to see a heartwarming true story related to Send Out Cards:
Send Out Cards Intro DVD
And, don't forget those addresses, and your names!
Saturday, March 7, 2009
How I got here, I don't even know.
From a child that rocked and flapped and disappeared into his own world to a junior in high school, who is facing the stiffest tests in any young person's life. Don't ask me how I got here. One day at a time doesn't seem to do it justice. And I haven't gone crazy and neither has he. Don't say there aren't miracles.
I don't know any numbers and I am too tired to do the research, but how many children with Asperger's take their SATs or the ACTs? I am not talking about gifted Aspies. I am the mother of the run-of-the-mill child with average intelligence according to all the tests he's taken, but with definite below-average verbal skills. I won't parade the numbers in front of you, but he was diagnosed with Receptive/Expressive Speech Disorder since he was in elementary school. His recent testing put his reading comprehension age around 8 years old. And yet, his word recognition age is around 21 years old. Should he even attempt the SAT with a vacillating scores like that? He is pulling a C in Math and we have struggled to keep those grades in the high C range. It just seemed too far out there.
I know this is a side topic, but he is always talking outside the box,
creating new words and positively amazing us all with his quirky insights.I have talked/tweeted with other mothers who tell me great stories. I still remember a child grunting, whistling and humming.but now, he loves to create words that aren't in the dictionary (he knows this, because he loves to read the dictionary!). One word that family and friends have adopted is "linner." Linner is the comparative word for brunch. Brunch = breakfast and lunch. Linner = lunch and dinner. Linner is like a very late brunch or early supper. I told him people used to use the word supper, but he just replied, No, Mom, that word is used just like dinner now, so we need a new word." Can't argue with that one, so we use linner.
Well, back to the topic at hand; here we are in his junior year, and everyone is talking college. "College!?! What!!?!!," as I gasp and sputter. Yes, the school and this crazy program I signed him up for (since we don't get therapy at all, I sign him up for every free program I can get my hands on. He has been in AVID, Education Talent Search,etc) are sending home reams of paper and thick, glossy books entitled "The 411 on College."
I signed him up for the SAT. Then I took a look at the SAT. Kinda backwards, I know, but a lot is going on in our house lately. It hit me real hard: there is an essay requirement on the SAT. ESSAY. 8 yr. old comprehension. Okay, that's not good.
I did make a half-hearted attempt to search the library and online for help, but quickly realized that this test was just not going to happen.The study guides were thick, newsprint looking monstrosities. The tapes had suspiciously vanished. Dead end. Then, I headed online. YouTube (which, by the way, my son loves at the moment) had videos, but I couldn't get into any of them. Maybe I am wrong, and if someone finds a great one, let me know. Nothing moved me at all. It didn't look like this was going to happen. At least, not by May 13th (remember, like a dope, I scheduled before the due diligence)
My son has become very resilient over the years. We have no more meltdowns, we have no more stiff as a board "honey, are you there?" episodes. But, remembering my SAT almost through me into a panic and I remember scoring very high. I just couldn't do this to him. So, I decided that he would take the ACT. What is the difference?
SATs test critical thinking, logic and reasoning, where the ACT focuses more on what have you learned scholastically. I don't think I need to tell you that they really don't want my son to draw conclusions or make critical thinking analyses. They would never believe their eyes. The kind of leaps and connections he makes here at home are out of this world. But, still the problem was preparation. Even with a total multiple choice test with no essay, he needed prep.
And then, I found it. E-Prep. I fell in love. Here was a site that looked like it was MADE for us. Video run instruction. The ability to stop videos at any time. An entire prep course in video, showing, not just telling. I am in love.
I don't do reviews very often, and this is not really one either. Check the site out, but this is the answer for BOTH my children. For the oldest, who has a fantastic memory, he will quickly remember the video instructions. For my young son, who has a damaged memory system, the moving visuals that can be repeated are perfect in order to increase retention and recall. Unlike static words or audio, videos always seem to ease learning and remembering for him.
The downside? Yes, there is one. The course is not free. But they do give options that run from $69.00 to $249.00. Somehow, some way, I will scrounge up the money for one of the courses in the middle. Hopefully, it will be enough to give him a good grade. And, then we can start discussing what he would like to study and what he would like to be.
Now, that folks, is a WHOLE other post. Must tell you about the fun we are having getting him to volunteer and find a job.
Until next time, take care.
Thursday, March 5, 2009
Yesterday's post was a very hard one to write. I don't often let out that I feel overwhelmed and scared. But that post brought some quick assurances and good vibes from so many people. Thanks to all of you.
Well, what do you do when you get up the next day and nothing is any different? Did you read the last post to the end? There was a list of things to do and I am doing them.
Today, I printed out two flyers that I put near my computer to gaze at when ever I take those 15 minutes breaks per hour to rest my eyes. One says, "Opportunity is missed by most people because it is dressed in overalls and looks like work." The quote is by Thomas Edison and was tweeted to me this morning by @Outlaw_Marketer. The other one, I neglected to keep the tweeter's handle (in the future, I will be linking all tweets to web pages), but the quote went like this, "Vision without action is merely a dream. Action without vision just passes the time. Vision with action can change the world."
Those are the new quotes near my computer to keep me going when I feel so overwhelmed. They join "Obstacles are placed before you to test your resolve and commitment towards obtaining your goals" and If God brings you to it...He will bring you through it." All these words mean a lot to me. They are reminders that others are suffering, others are in a worse position than I am and that I should give in for a moment, but get back to the business of doing what I do best: fighting my way out of a challenge.
So, today, I am up early (5:30am) with my head brimming with ideas. If you haven't noticed the new banner on the right, it is for a program I am involved in though a great online herbal store called iHerb.com. I am not a great salesperson, so I will just say occasionally you will see announcements about what they are doing in the side bar. This is a company that I have personally been involved with for nearly 13 years. I posted a note on my Facebook about my involvement.
Also, I am following a bunch of coaches through Tweeter, and three of my favorite ones right now is Pat Weber (@patweber) who is a great coach for someone like me - introverted and shy (did you know those are two separate types?), J.Sewell Perkins (@thesciccoach), who appeared on a great blogtalkradio show that I will follow as Tracey Tarrant parades experts in front of me every week. The third great coach who is just starting out, but is SO sincere, I just love her to death is Joanne Julius Hunold, CPC (@intandem). She is another coach for us introverted who is very real and down to earth.
I mention these women because in Tip #1, I mention getting rid of the negative speak and getting positive people in front of you. Well, if you are mostly housebound like I am that is not easy. So these women are my neighbors (along with all of you who comment or send emails or call!). I have made new friends who challenge me to go beyond my current (cold) circumstances and keep looking for those opportunities. Even if they seem like work.
Yesterday, I explained to my two boys about the circumstances in our home. Things are not well and I let them know it. But I assured them just like I did when I became disabled, Mommy will take care of it. Trust me. My oldest son, who always seems to know the right thing to say, exclaimed, "Well, we can just pray to God about it. But if you say you will take care of it, I know you always do." Who says Asperger's needs to be cured? He warms my heart!
Well, I hit the wall...I am okay...and I am back in the business of taking care of my family.
Wednesday, March 4, 2009
Below is a list of Tweets I sent this morning. Not so much to my followers, but to me.
You see, I am feeling like I could hit a depressive wall soon. You know that dissonate wall when your dreams and goals smack into reality really hard? Well, I see it coming. Here is the problem.
I want to do so much. It's the reason I am back in school. I want to provide a safe home and environment for my children with a little land around it. I want to have a place for my sister to retire to when she is ready. I want to live comfortable with enough to eat and read.
And, right now, as I start my fourth day in a house without heat, I wonder if I will even live long enough to see my children grow up. My mother died when my sister was only 19, and I was 29. I have always felt we never had enough time.
Maybe that is what is wrong. I feel like I am starting late. I mean, I am 43 and trying to complete my associate's degree. I am so slow reading and comprehending. I wonder what am I doing.
So, this morning, in the bitter frigid air of my dining room, I decided that before I hit that wall, I would put on my inspirational music. You know what I mean. We all have those songs that keep us going when there is nothing tangible left to go on for.
Of course, I cried. Listening to these songs always makes me feel like I have been running 100 miles an hour in the wrong direction. I have been focusing on goals and accomplishments; tangible ones like grades. when some days I need to focus on internal goals. The ability to look inward, take stock of our lives and think about the good stuff.
Like the friends I have made through this blog, Facebook and Twitter. Like the difference people tell me I am making in their lives. How they appreciate me. Yes, little ole me.
Folks, I can tell you right now I am about to enter a Faith Walk. It is a term I came up with over 10 years ago, after my parents died within seven weeks of each other, while I was pregnant with my 2nd son and after my then 1st husband decided he didn't want to be married anymore.
A Faith Walk is a period of time you go through when you don't see ANY positiveness around. I mean it. Nothing looks good at all, and the disasters seem to pile up.
How do you keep going through one of these?
Everyone is different, but this is how I survived then and now.
1. Get rid of anyone's conversation that is not positive. Really. Even though you don't see anything good, surround yourself with good sounds and words from other people.
2. Go to the library (I had to walk to it one time) and come home with something funny, something miraculous and something spiritual. I don't care if you don't believe in any religion. Now is a time of negativity. Reach out for something beyond yourself and your situation.
3. Get the music that will keep you going playing. Put on constant repeat if you have to. Sing at the top of your lungs. Crying while singing is permitted. Getting angry at your situation is encouraged. This leads to letting the problem have its space and gets you ready to move on to solutions.
4, Take control of whatever you can. Control makes one feel a sense of power. The feeling of powerlessness has to be avoided at all cost. If all you can do is straighten the edges of the covers of the sickbed you lay in, by God, straighten them! Sit back and admire. Say to yourself, I did that!
5. Look forward to change. I mean this. I know you don't know where it is coming from, but get in the frame of mind that change eventually comes. I don't care if you think "this will never change." I was a single parent for 10 years. During that time, I became disabled and hit serious poverty. But that same situation is not here today. Back then, everyday I got up and looked for change. Expect it. It is coming.
6. Repeat this process for as long as it takes.
So, to get back to the beginning. Here is the tweets I sent out this morning. It is some of the lyrics to one of my favorite uplifting songs by Bill Gaither called "Thanks for Sunshine." If you click on the little music player under the picture, you should be able to hear it.
Well, I have to get going. This faith walk looks like it is going to be a long one.
judielise Listening to my favorite "Thank You" song and thought to tweet some of the lines. ThankU lines.
judielise ThankU line: Thanks for sunshine
judielise ThankU line: thanks for love
judielise ThankU line: Thanks for flowers.
judielise ThanksU line: Thanks for children, for each girl and boy.
judielise ThankU line: Thanks for laughter, Thanks for the joy.
judielise ThankU line: Thanks for labor.
judielise ThankU Line: Thanks for tears.
judielise ThankU line: Thanks for tomorrow. Fill it with love.
judielise Thanks for listening. That's all. Back to your normal Twitter chatter.
Picture credits: Rosie Hardy on Flickr
Tuesday, March 3, 2009
Due to some really bizarre happenings in my life over the last 3 years (that I will have to blog about later), I am opening my company up again. For those of you who don't know, I started a virtual assistant company back in 1996, back when hardly anyone knew about virtual assistants.
I performed clerical, customer service, and light graphic design work. I had a fabulous run for 10 years, working for everything from non-profits to sales executives and business directors, who needed extra staff. My greatest accomplishment was a mail program that I designed from scratch for a client that boosted his sales 532% in one year. That is still my crowning glory, thought it was tough designing the mail piece, coordinating with the mail company and keeping the back end database with updates twice a month.
I closed it down in 2006 due to illness. Now that I have been getting my health under control and I am back in school, several people have asked me (not including old clients who have begged me) to open it up again. I have hesitated and I will tell you why.
Sitting at a computer for 12-16 hours a day is no fun. It was hard on my back and after back surgery in 2005, I tried to limit my time sitting. Also, it is extremely hard on my eyes. I don't talk about it much, but I value my eyesight more than anything besides my children and try my best to protect what sight I have.
But, because of life circumstances and the fact that I now sit here anyway, going to school, blogging, Twittering, etc., I have decided to start it up again. Plus, to tell you the truth, I miss it!
Stay tuned for further posts about progress, projects, the trials and tribs of business ownership (again!), who I am working with and whether I survive this time around.
Wish me luck, send me prayers and well wishes. I am going to need them.
If you go way back to the beginning of this blog, I brought over some links and articles regarding sleep issues in children. This is always a very big concern in our home, because of young's son inability to have good sleep experiences.
I realize I am jumping around a bit in this blog (yesterday, new apps, today sleep!), but I have yet to figure out how to put blogposts into groups and categories. Once I do that, this jumping from subject to subject will be better organized.
In my daily perusal of medical journals (yes, I have strange hobbies!), I came across these two article titles:
The big issue is that this has DEFINITELY affected his cognitive functions, executive functioning and memory. His short-term memory is shot and long-term is sketchy. He can not draw inferences and his brain stubbornly refuses to make leaps of connection from one subject (or even word!) to another related subject (or phrase!). Teaching him is very difficult (on bad days, I say it is non-existent) and I struggle to keep information flowing and relevant.
Okay, I am getting off subject. This is not about my son, per se, but is about awareness. Parents, please listen to me. My son went through the usual diagnosis of ADHD for years. However, though the behavior is similar, it is NOT the same disorder. My son remains unresponsive to ADHD meds. In fact, he is on Concerta (also took Ritalin for awhile, but made the sleep phase problem worse!), but it does not increase focus or attention. Makes him more hyper actually.
The point I want you to take away today is sleep disorders are very real. They have very real symptoms that mimic other disorders. And most doctors are not thinking "sleep disorder" immediately. This is changing.
I had the chance to attend a sleep conference last year in D.C. sponsored by the Sleep Foundation. There I heard the latest research into sleep disorders. Out of that meeting came the recommendations for doctors to begin asking questions regarding sleep for children as young as 2 years old, especially if there were hyperactivity symptoms.
Sleep issues are real. Here in the Unique Family, we live through it everyday. Three us (out of 5) wear CPAPs (hubby fights wearing his. Grrr!). All three have memory and cognitive issues.
Pass this along to anyone you think it might benefit. Also, let me know, anyone in your family/Friends that you are concerned about?
Monday, March 2, 2009
I will talk about one I played around with today. I actually got this from a blog I follow in my Google Reader (don't ask me how many blogs, I have totally lost count). It is from Jose Picardo who blogs at Box of Tricks. He is a wonderful person to listen to (great video content) and learn from. And one of his apps that he has written about is Animoto.
Animoto takes your pictures and creates a wonderful dynamic slide show out of them with music. I just had to try it. Doesn't matter that the furnace died yesterday and I am sitting here as cold as ice in Baltimore's first big snow in nearly 6 years. Doesn't matter that I should be tired or that my eyes should rest.
It is amazing how you can make your body wake up when you are excited about something.
So, below, is my 1st attempt at Animoto and I love it! I used my rose flower pictures because I already have them batched at Flickr . A couple f steps later and this is what I got.
I had stopped taking pictures because I hate putting them in albums where they languish. This may actually spur me to purchase a digital SLR. After all, my major in high school was photography. Check Animoto out and give it a try.
And, no, they are not paying me to say this!
My TweetSheep cloud serves as an introspective look into who I tend to be drawn to on Twitter.
It also let me know whether I am not searching for people who cover or represent certain subjects that are dear to me. I'll give you some examples.
I have posted a pic of my current cloud. You can see that autism practically jumps off the page. I have said it already that the autism community is represented very heavily in Twitter. Then mom comes up quite big and so does technology. But as an IT tech major, that tells me my connection to the tech world is not so strong in Twitter.
Now at first glance, that may not look good. But I already know enough about me to know that even though I love technology, I love it in context to people and learning.
What is minuscule in my cloud is the disability tag. So small I could barely read it. Not good. I want to know more about disability advocacy, assistive technology and the issues that surround that community.
Now, the thought comes to my mind: Am I not searching/connecting to Tweeters involved in these areas or are they not online?
Here is an open call. Anyone who has followers or follows Tweeters involved in disability issues, AT and the like, please post some people to follow in the comments.