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.

Monday, April 27, 2009

Fix Your Child!

I have got to stop doing this.

Starting out as a comment to a friend's journal entries on Trusera, I ended up writing too many characters to fit in the message box. Instead of deleting 258 characters, I decided to turn it into a blog post. This is the second time this has happened. Mostly, I just end up leaving really long responses. But, today, this ended up having a life of it own.

My friend was reading the latest assessment for her son. She was frightened and angry at the same time. She wanted answers. She wanted quick answers. She knew she wouldn't get them, but in her heart, she wanted them just the same. If someone could have walked up and handed her a prescription that would take all the deficits away, she would have taken it and parted with every earthly possession she owned to get it.

She didn't want to hear "nothing can be done." She didn't want to hear about how autism can be a blessing. And, I responded with my own, similar feeling.

Read on.

I would NEVER tell anyone that their child should or shouldn't be "fixed." That is not the right word for what you want to do. You want to help your child succeed. They need intervention. It exists and you want them to have it. There are so many ways to help our children. Therapies, tapes, DVDs, our own behavior and drive, etc.- all this can make a difference.

I realize that some people have severely delayed children, who remain non-verbal, wearing diapers into their middle school years. I realize there is a side to autism that is aggressive, violent and even dangerous. They are in a different place than you or I. Where I am, I can see a tunnel. It is a long one, but it has a faint light at the end of it.

When I was told my son needed a special school and would never graduate high school, I dug my heels in and fought. Every night, over and over again. Fought the delays, the stimming, the inattention, all of it. Through what I now know is called modeling, I shaped his responses. Eventually, we could understand each other. Not always, but enough. Once we could understand each other, then the real work began. Over and over, like a broken record, I explained the world to him. How he should stand; how close he could get to people. If he walked out of a room while someone was talking, how it would appear to the other person. How to hug. How to hug tightly. How to kiss his mother good-night. We even formed a ritual around that. We patted them into our cheeks to make sure they couldn't be wiped off. At 16, I still occasionally catch him doing it.

This Saturday, my son will take his first SAT. I don't expect high grades. I expect him to finish. As I type this, his practice test is printing. We will go over it, line by line. He will take the test again next year, his final year in high school. He is on time and on no meds. He has driving assessments, a 2 week career assessment with assistance. He will go away for 4 months next year to live away from family. He is not on the disability they asked me to file for him 11 years ago.

My 2nd son has speech, language and memory delays. We fight the lack of language skills through picture and video vocabulary, mind-mapping software, practice, practice and more practice. Even though his prognosis is more grim, I forge ahead and fight his brain's deficits. I expect more and each day, we, he and I, somehow get it.

This is my rant today and my advice. Don't ever stop fighting to uncover the abilities your child possesses. Whatever level your child functions, don't just accept and be content. You may end up like me; a tired, but triumphant mother of the best two people I know.

Friday, April 24, 2009

Roundup for the Unique Family

As this site grows and new followers come on board, I got an idea from ProBlogger's Blogging Challenge to gather up some posts from this blog, and post them in one spot. It is called a "sneeze page." What a label! But, it is a good idea.

I would love to have this as part of my About Me Page, but this way, there will have a spot to send someone to, if they are looking for background information on any of the Unique Family.

So, here on one page are all the Updates, Updates. All of the posts from Part 1 through Part 5. It is not for anyone to read all in one shot, unless they are up to it. But this way, if anyone wants to get to know the family members, here is the page to find the background information on each family member.

Now, if I could only get some pictures from all of them, I could put them here, too! I am working on that one!

Links to all the Updates:

Hubby (Matt) - epilepsy, Obstructive Sleep Apnea, Depression, Anxiety, possible Bi-Polar or Manic Depressive.
Updates, Updates, Part 1

Youngest Son (Russell) - Dysautonomia, Chronic Fatigue Syndrome, Obstructive Sleep Apnea, Delayed Sleep Phase Syndrome, Tendinitis.
Updates, Updates, Part 2

Oldest Son (Andrew) - High Functioning Autism, Asperger's Syndrome
Updates, Updates, Part 3

Sister (Kim) - Obesity, Diabetes, Obstructive Sleep Apnea, Stroke Survivor
Updates, Updates, Part 4

Mom (Judielise) - Degenerative Myopia, Partially Deaf, Vertigo, Degenerative Disk Disease, Dust Mite Allergy, Arthritis (Osteo), RSD - 90% remission
Updates, Updates, Part 5

Update: April 26, 2009

Here is a pic from last year when family went to King's Dominion. It is the boys (Russell on the left and Andrew on the right) and I. Will work on getting good shots of the rest of Unique Family.

On Jenn Brockman's Radio Show Today!

I was on a BlogTalkRadio show two days ago. If you don't know who Jenn Brockman is, she runs a blog and hosts a internet radio show, called Special Needs Kids. It is the first time beyond this blog, that I have been recorded and archived.

I tell you was as nervous as a groom on the wedding morning! I know it was just her and I talking over the phone. I know there wasn't a huge audience, but the potential of others listening today, tomorrow and even a year from now was a daunting idea.

I got through it okay, and received a lot of good feedback from friends. I could embed the player here, but it has a bad habit of turning on immediately once the page loads whether you want to hear it or not. So, I decided to put a link here and you can listen to it at Jenn Brockmans BlogTalkRadio page.

Let me know what you think!

Oh, and BTW, I have a chance to be on next week again, discussing Virtual Education in Maryland with a wonderful group of women from the non-profit group, Emerging Minds of Maryland. Put in a reminder on Jenn's page if you can join us or listen in archive.

It will be nice to be able to shrink back into the corner and let others have the spotlight. Once was enough for awhile!

Tuesday, April 21, 2009

Just a Video Today

I got this Tweet in my stream today. It touched such a core rhythm in my spirit. In it, performers from all over the world play a song, even though they cannot see each other. The joining of musicians makes a living instrument of the earth, connected only through technology. Yet, aren't we all needing the same thing? Someone to stand by us?

After reading through the responses to my last post, I wanted to do something more. So, here it is.

This video interlude is a tribute to all my online friends, here and there all over the world. Let us forever make these bonds strong.

Playing For Change | Song Around The World "Stand By Me" from Concord Music Group on Vimeo.

Friday, April 17, 2009

Online Loss

This week I realized how deep the relationships I have formed online can go.

On Twitter this week, I read about one follower who had surgery. In another tweet, one mother wrote in that a fellow "TwitterMom" lost her little baby girl. In my company, I received a thank-you card from a grieving family, whose daughter died suddenly in a motorcycle accident. And, then finally, I received news from one of my social communities that a woman I had welcomed into the group had passed away yesterday.

That was the straw that broke it for me.

I know I belong to a invisible disabilities community. I know that many of the members struggle with diseases and disorders, some treatable, some incurable. Some deadly. But what caught me completely off guard was the realization that I have never laid eyes on any of these people.

Every one of them were connections I made through the technology of our present age. Through screens and text. Through digitized pictures and personal online journals. Through little 140 character messages sent from one geographical dot on the globe to another.

This won't be a long post today. My heart is so full of emotions. I wish I could be there to wrap my arms around family members. I wish I could stand by as they lowered little caskets and tossed flower petals. I want to come by the next day or the next week with a casserole and leave it wordlessly in the fridge. I want to do someone's laundry; weed someone's garden. Something to show I care and am nearby.

But, I can't.

I can only text back my condolences.I can send a card. I can leave memorial pictures like the one above on personal profile pages. It may not be what I want to do, but it is something. When words are not enough, any action can convey love and compassion.

That's all I have for today.

Oh,no. I do have one more thing to say.

If one more expert and guru tells you that Twitter, Facebook, LinkedIn and even MySpace are a waste of anyone's time, just tell them about all the mothers supporting a mom who lost her baby. Talk about the family that received cards from complete strangers as they buried their daughter, surrounded by her teenage children. Tell them about this blog; send them to this post.

I just have one thing to say to them. If it connects people, it matters.

Saturday, April 11, 2009

Dear Kid Saturday

Dear Kid Saturdays at Cutest Kid Ever

I just met another wonderful Mom who runs a blog, called Cutest Kid Ever. She sent out a tweet asking other Moms to participate in a Dear Kid Saturday. I think it is a great idea. Thanks! Here is my Dear Kid Saturday post.

Dear Son,

Today, I was telling someone else about how proud I was of you. But, it is important to tell you. Often, I forget to tell you how proud I am of your accomplishments. That is going to change.

I am proud of the way you have handled the medical and physical changes in your life. When I look back at the pictures of you as a young boy; how athletic and energetic you were. It is hard for me to accept that those days are the past, and we may never get them back.

I have one particular memory that stays with me always. I remember when you were in junior firefighters, and the older men had that joke to put all the firefighting gear on the kids and see if they could walk down the fire station hall. I remember how each kid tried and never made it more than a couple of steps. Then you timidly raised your hand to try. Everyone knew you were a big kid, but no one thought you could do it either.

They loaded you up. Boots, full uniform, helmet and oxygen tank. For a second, you looked like you would topple over. But slowly, ever so slowly, you walked the entire hall and back.

Not a sound could be heard the whole time.

I started crying, wishing I had brought my camera, and as the whole fire station meeting hall erupted in applause, I knew then, that nothing would ever stop you.

Today, I feel that same feeling. Even as you hobble with the brace on that bad ankle. Even as you plop down in a chair, tired from the slightest exertion. I am proud of you.

You aren't the athlete and junior firefighter anymore. Today, you have taught yourself Flash animation, gaining respect from much older animators online. You are the friend everyone counts on in your chat rooms. You make one little girl feel very special even though you have never laid eyes on her.

Regardless, of what comes; sickness, disability, more surgery, I know you will overcome. You will carry whatever weight God places on you. Slowly, but surely, you will make it across whatever road is in front of you.

Mommy loves you and is so proud to have you as my son.



Friday, April 10, 2009

Five Things To Do When Your Life Hits a Brick Wall

Everyone these days seems to write a List Post.

And, since I am part of ProBlogger’s Challenge, I am supposed to write one, too. Actually, I was supposed to write one three days ago. That was Challenge Day #2 and here I sit at almost Day #5 without it written. I am falling behind.

This morning, in my favorite musing place - the shower, I stood thinking of what I could say. I just didn’t want to quit the challenge, because I was stuck at Item #2.

You see, the problem is, I am not an expert. I never finished college. In fact, I am in school now, finishing the degree that never was. Life, children and disability got in the way of that.

I haven’t written a book, so you know I can’t be an expert. There aren’t any publishers knocking down my door to read what I have written. Nope. Not one.

I don’t have 15,000 followers, so you know I am not one of those “experts of SEO” or Social Media. I am definitely not up there on the Tweet graders and stat sites. I counted it an honor when Chuck Jones’ daughter or Dr. Bernard Harris followed me and hoped I had something wonderful to say to touch their hearts.

What the heck did I have to say to anyone in a list? A list they should follow. A list that would make them say, “Thanks Judi, for that.”

Then, as usual, a thought came, standing there in the shower. I will write about ten, no five (make it easier), five things to do when...your life hits a brick wall.

There, that was catchy enough. A little quirky and offbeat, but, there it was. At least a title. But, what did I mean?

I can only write what I know from my experience. And, in my 30s, I hit a brick wall, figuratively speaking. Literally, I was told to go home and give up working for the rest of my life, because I was suddenly part of the 650 million people in the world considered disabled. And, it took many years to come up with these five things. Many years of doing things wrong, doing things the way everyone else told me to do them. Until I hit upon the way to get passed every brick wall in my life.

So, here is my list:

The Five Things to Do When Your Life Hits a Brick Wall

1. Grieve Your Loss

This is big. You have lost something. Sometimes, when you are suddenly disabled, you lose a lot. You job, your career, your home, even your spouse. Even if it is not catastrophic, you have lost something. And you need to vent. Go ahead. If none of your old friends will listen, get some new ones. There are communities like Invisible Disabilities Advocate, Disaboom or the latest one, started by a friend of mine, Rudy Sims, Disability Resource Exchange. Find some people who know exactly how it feels. And, then scream. Cry. Wail and curse God. Seriously. This is so necessary.

If something has died in your life, give into the need to mourn its loss. Without this, you will be stuck in denial and anger, swinging back and forth like a pendulum. Feel all the panic, battery-mouth tasting fear of facing that ugly thought that something in your life has changed and this change might be around for the rest of your life.

2. Get Help Before You Burst

Now, you say, Judi, this sounds a lot like No.1. Yes and no. This is the point at which you are not venting anymore. You are not in some depressed state. In fact, you are so alert, you could scream. If you are bed-bound, nothing on television interests you anymore. The phone could ring until its battery died. If you are in a wheelchair, you have rolled a groove into the carpet. You are past angry, fearful and broken. You are at the stage of saying, “Well, what the heck do I do now?”

First, congratulate yourself. You are making progress. You are bored. You want something to do. Now, go out or get online and find every rehabilitation center, disability advocacy group, volunteering service-virtual and offline, and begin to find your new purpose in life. You don’t know what it is, but for the first time, you are not thinking of your loss. You are thinking of your time and how to spend it.

Ask questions. Go to the library or read books online. Read blogs. Join social communities. Suddenly, you will find the whole world is still there, waiting for you. All you needed to do was awaken your mind again to the possibilities. Expanding your mind is always the first road toward redemption from any brick wall.

3. Take Your Time

What!??! Didn’t you just tell me to get started on a bunch of things to do? But, here, you get the benefit of my experience and mistakes. Yes, you are ready to launch, but you are not the old you. You may have limitations, both cognitively (have you ever been on 16 pills a day?) and physically. You cannot jump into anything without making plans. I launched so many things between the date I was sent home and now. All of them failed, because I still thought I could do things the old way.

Whether you face a chronic illness, a physical disability or take medicine to keep your system stable, you are now operating differently than before. And, this needs a different strategy. Perhaps you will need to be driven places you used to not think were so far. Maybe you need a bigger screen and make the icons really readable. Maybe you have to travel with a little magic bag of all the medical devices you need. Slow down, figure out what you need to get there and get those things together first before you leap. This leads me to #4.

4. Re-evaluate Your Life

What can you do? What skills do you still have? What can you learn? What would you like to do, now that you have all the time in the world? What do you want to be? Where do you want to go? What do you long to see?

In some ways, I feel almost happy this happened to me now. What a gift to start all over again. To make plans that as an older and wiser person, I might actually do.

Now, don’t get me wrong. This is no pie in the sky esoteric babble. After a brick wall, you life is radically different. You may be in a fragile financial state. Your health may swing into instability.

This isn’t some light stroll through the park. But, you get to redesign what you want to do, based on what you have left. And, you will be keenly aware of what you have left. You will maximize every strength, since you have increased your weaknesses. You will find power in your life, even in the midst of limitations.

I have learned to see this as a gift. And, when you hit a brick wall, you deserve one.

5. Re-commit To Life

This is so necessary, don’t leave it out. Commit yourself again to being part of the human race. Something tried to take you down and failed. People walked away from you and you have survived. Your house may even be gone, but you have a new place and you like the view a whole lot better from this one. Whatever it is, re-commit to life and all it nuances.

I have heard from many people that after their accident or stroke or whatever, they now appreciated the flowers and a cool breeze. The stillness of the air, interrupted by the low chirrup of far-flung bird and distant crickets. Whatever you feel is a new commitment to life, make it. Keep it. Against all odds that may come. Against any other brick walls.

Well, there it is. My list. I hope you can gain something from it. Drop me a comment if it spoke to you. Or if it gave you courage to move to your next step.

And, to ProBlogger: See? There are no brick walls anymore. Thank you for your Challenge.

Tuesday, April 7, 2009

Ankles, Schmankles, Part 1

This has to be Part 1 because we don't see the orthopedic doctor for another week.

But, just to fill some of you in, this weekend, my young son "twisted/sprained" his ankles yet again. I say "yet, again" because we have lost count. Somewhere back in 2004, he began to fall, trip and twist his ankles.

First it was the right side, and then, as if by some strange decision, he only began to have problems on the left side. We have been to the two hospitals in our area. The second one knows us by sight now. We know the drill. I even call to make sure their Patient Fast-Trak is open. We don't need to sit there five hours just for someone to tell us it's not broke.

Not that it hasn't been broke. At some point between September 2004 and June 2005, he fractured the inside and outside ankle bones in that left foot. No one to this day, including doctors knows how he did that. He mumbled something about balancing on a ball. I told him he wasn't a seal as they put the metal Robo-boot on.

But it didn't stop.

A year later, running hurdles, he chipped a bone of the same foot. Wrapped up again, and afraid for further damage, I started hiding the skateboard, rollerblades and bicycle. Then, I listened as other Moms of athletic kids complained of broken bones, and I started to relax and feel a little better.

Until the bone didn't heal and nearly a year after that, the chip had to be surgically removed. He had been in almost constant pain, and I felt like a guilty criminal for making him walk on it.

By this time, I started to get worried. Everyone assured me, it was just childhood and he would be fine.

Except it happened again, and again. After awhile, whenever he walked, he said, his foot "cricked" and the pain would start. Sometimes, he could crick it back. Sometimes, he couldn't. When he couldn't, the pain was hardly bearable and nothing helped. No painkillers, ice, heat, pain patches; nothing. Except if he could crick it back.

Off we went to see more doctors. One orthopedist blew us off. "Kid is just accident-prone." Onward to the podiatrist. He thought that arthritis was setting in the area near the surgery, but had no clues on the ankles, since all the x-rays looked fine. He put my son on Glucosamine/Chondroitin and MSM, but the insurance balked at paying for prescription strength pain patches and orthotics.

This was where I was last week, when it happened again. This time, all he did was walk from the kitchen into the dining room, and "Aaaarrgghh!!!"

I knew the sound by now. I didn't even break a sweat. "See if you can crick it, honey," I called out from the dining room.

It wouldn't crick. Not then, not all night, not the next morning.

Off to the ER we went. X-rays are fine, but this time, the diagnosis was tendonitis.

Wait a minute. Not a sprain or twisted ankle?

No, he has tendonitis or tenosynovitis.

"From walking!?!" I shouted, not realizing my voice was rising.

I mean, since the dysautonomia diagnosis, he hasn't been the athlete. We just completed physical therapy for 2 months, so I know he's not deconditioned.

To make this saga short, we now have to see yet another orthopedist to see if someone can tell us something.

In the meantime, he continues to have sharp pains, feels better with the brace on and pops Naproxen when it gets unbearable.

I no longer know what we are dealing with here. Just last month, he began to complain of sharp pains near his hip whenever he twisted in the shower or bent over and didn't come straight back up. The complaints about all his joints have increased.

And as usual, I am on the Internet, looking, asking and searching for answers. Just pray that this doctor will bring this five year ordeal to a close.

Friday, April 3, 2009

Changing Blog Layout

Oh, please bear with me as I try to change the layout of my blog!

Here I am a student, studying IT and I have come to the conclusion that I like people more than I like machines and code. I am more interested in connecting with you than making things spin, jump and rotate. So much for that Bachelors in IT. After I finish my Associate degree in IT, I will be moving on to either plain Communications or Web-based Communications as my next major.

So, I have changed this site not to make it snazzier, but easier to read and understand. There may be more changes, but I am looking for feedback.

Please let me know if you like ads and links on left or right. Let me know if you don't mind colors. Being a visually-impaired person, I tried to pick colors that are strong and dark for text and links. I also made the background white. This is best for most readers.

I will be adding a newsletter sign up soon. Why?

Because I want to let you know new things before they hit here (easier to dash off an email than to write a blogpost!) I promise you will NOT get more than one every 2-3 weeks. Seriously. I have enough mail in my Inbox. I know how you feel.

Leave a comment and let me know what you think.

Take care.

Wednesday, April 1, 2009

A Lightbulb Goes Off

This started out as a response to one of my friend's blogpost. Mia, at General Hysteria, wrote a very important post about how she was finally going to change from being the MommyBot, to being a Mom.

MommyBot is my word for the mother who is running herself ragged tending to kids to her own detriment, and their spoiled rottenness. The mother who looks horrible, knows it and is so demoralized by her own tiredness that she has ceased to care. The mother that secretly wonders why she became a mother at all. I know, we all have "one of those days," but this is more than one day or two. Before you know it, this feeling stretches into months or all their elementary years.

Now, I know this is old school, but sometimes, I feel we are hovering too close, especially, if we have children with special needs or autism. I am not talking severe autism here. Those children do need constant care, especially if they can be aggressive or bolters.

No, I am talking about jumping at every call, every cry and every whine. Here is the response I was going to leave her. It got so long, it became its own blogpost!


Yaaay, Mia!

You don't know how happy I am to see this post!

Not knowing you as long as friends I have had for years, I didn't want to get on here and give you a good talkin" to, but I was really tempted. Perhaps my energy came through the Internet!

We can't give our children everything! We can't be there every moment. This is a left-over response from when they were really little and really needed that kind of care. I am not talking about severe autism that continues to need close supervision. I am talking about responding to every whim and noise.

One of the hardest things I have to do in the Unique Family is NOT run to the aid of everyone every time. With my bunch, there wouldn't be any of me left.

I don't know if you ever saw the movie "Ray," about Ray Charles. One of the most moving scenes was when he fell in their little home and his mother wouldn't come running to his side. She actually didn't even say, "honey, get up." She stayed quiet while her darling boy learned to rely on his other senses to orient himself to the world.

I keep that image in my head, EVERY DAY.

My oldest, Aspie son is nearly 17 now. He is so independent, it scares me, but I am happy. No one will take advantage of him. He knows how to shop, cook, clean for himself. He is learning money management and how to save. As we work with DORS in the next two years to get him working, he will be ready to be on his own.

My youngest, on the other hand, is my whiner, mommy's boy. And being chronically ill, makes it worse. Yesterday, he wanted to make a cinnamon toast sandwich. I told him how to make it. He went to look for the cinnamon and couldn't find it. Normally, I am just on "auto" and jump up and get it or even make it. But, recently, I decided that at 13, nearly 5'10" and 211 lbs, he is big enough to start learning the truth about life and his condition.

I told him two places to look, how to spell it and what color the bottle was. Five painful minutes went by. Everything in my heart strained to get up and end it, but I stay glued stubbornly to my chair. He literally took everything out of the top spice cabinet, then walked in and said he couldn't find it.

I sighed but stayed put.

"Go back," I said. "Look for this word," writing 'cinnamon' on a piece of paper, "It is either in the top spice tier or the one with the door on it."

He responded,"Oh, I didn't hear the second part." This is common in speech/language disorders and short-term memory deficits.

Back he went for ANOTHER 4 MINUTES! I was positive the toast was cold by this time.

But he found it. He called out triumphantly, "I got it!"

Trying to stay as calm as possible, I said, "Very good, now finish the sandwich. Do you remember how to do it?"

"Yes," he replied.

A few more minutes later, he emerged from the kitchen with his sandwich on his plate. He sat, ate it in silence and then said,

"Thanks, Mom," as he went to clean up and saunter back into the living room to watch TV. He practically fell into the easy chair, obviously tired from that little bit of exertion.

But, I got a "Thanks, Mom."

Not because I made it for him. I usually have to say "Now, what do you say?" to get the proper 'thank you.'

No, this reply was based on something different.

I didn't save him. I didn't make it easy. I made him do it. And, he thanked me for the experience.

Moms, I know we straddle a very tall fence. Spoil them or fear we are neglecting them. Run to every call or see if they can work it out for themselves. Don't be too hard on yourself if you are one side or the other. I straddle that fence, falling over to one side or another, too.

But, I think I am finally finding my balance. You will, too.

Take care.