“Pssst.  Hey, Ursula, we gotta’ talk.  Do you have a minute?”

It’s three o’clock in the morning and obviously I need sleep, because that’s my refrigerator talking!  No, I’m not looking for a snack, and no my refrigerator doesn’t really talk, but it struck me as I wander my house trying not to wake everyone, that refrigerator wisdom could be the key.  So I’m going to do what any sane person would do at this hour: I’m going to go talk to the computer about it.

Nights like this one are rare for me.  I usually fall asleep exhausted and sleep deep, or reading the latest strategy in how to win the epic battle of Mom v. Autism.  Right now I’m picturing one of Ty’s graphic medieval reenactments being waged in the back yard, with me needing a much bigger sword!  I’ll have to look into that, but for now, back to the refrigerator.

How many times a day do we pass the refrigerator, home to all the one line magnetic wisdom of our times, and we don’t see it?  There it is, literally in black and white, the answer to life:

Life isn’t about finding yourself.

Life is about creating yourself.

I bought that magnet and stuck it up there a couple of years ago after a conversation I had with my daughter, Tori.  At 16 she thought she needed to have her life completely mapped out.   She wanted to find herself.  We have some great talks, but you all know that when the panic of OMG I have a life, hits a teenager, they don’t hear parents.  She thought she was going to control life, with no input from the fates themselves.  I can safely write that, because she’s still a teenager and the chances that she’ll read something mom wrote, looking for advice is slim to none.  But I figured if she saw it in front of her every morning with her orange juice, it might sink in and she’d relax and enjoy the process with a little less stress.  It’s her life to create using whatever the world gives her.

Who knew that the refrigerator was going to throw that back at me one sleepless night?  The audacity, especially knowing that the new Kenmore models are looking pretty good this year.

But there it is; refrigerator wisdom at it’s best.  You know, it’s true, I’ve been living a little too reactive, and a little less proactive lately.  That’s not good.  I was searching for answers again, instead of creating answers using the world around me.

Life is pretty good in balance when I look back.  Everyone has their epic battles.  Mine make it hard to sleep when I look into the future and take them in great leaps and bounds of what if…?  There is a lot at stake, to be sure, but what if we keep doing what we have been?  I have great material to work with, all of them sleeping soundly mind you, but I have it.

I think they call that success.

Damn, I was looking forward to that new Kenmore.

This afternoon I found one missing piece of the autism puzzle.

Today was possibly the perfect day.  Well, most of it was.  We were trying to ignore the sun and the birds calling outside, and concentrate on Wilson Reading.  Ty was doing fantastic.  And then the phone rang.  Another mom called to say it was an excellent day to do science projects in the park.

 I love homeschool!

 Lunch on a blanket in the sun was mixed with an up close and personal assessment of how bamboo grows in stands, which led to a discussion about the book, The Secret Garden, how tadpoles turn into frogs, how water from the Reedy River grows bacteria, and letterboxing.  That was only in the first half hour.  And that wasn’t even the good part.

 There’s a reason the myth about the lack of socialization in homeschool gets such a laugh from parents who actually do homeschool.   It’s because we socialize constantly, if for no other reason than to find resources and compare notes on how to best give our kids what they need.  And there, right there, was one of the missing pieces of autism.

 One of the major characteristics of autism is the lack of ability to understand and use social skills.  Sometimes people think that because our kids can be inside themselves a lot, they don’t have a need for connecting to other people.  Not from what I’ve seen.  Not only do they crave it, they can’t live without it.  I don’t mean in the cliché form.  I mean they literally aren’t going to get better without it. They beg for that connection, sometimes silently, I know, but they’re in there and they are starving for it.

So on my perfect day, I sat on the grass with another parent of a child with autism and watched as our two boys played and bonded for hours.  They argued, they competed, they watched out for each other at the rocks, and they communicated what was important in their individual world to each other.  There for a while they told secrets in the jungle of a bamboo stand, and later had to work it out over a favorite stick from the trees.

 While they were doing that, we moms talked, traded life secrets, discussed our differing opinions on the dynamics of parenting, and talked about what was tearing our hearts out about our kids.  And there it was.

The missing piece is other people.

 It’s been a rough couple of months, but the support you get from other parents gets you through.  It doesn’t matter if they have kids who are autistic, it just matters that you can be there for them, and they are there for you.  That dynamic is all the matters.

 I truly believe that will be the other side of the missing autism puzzle:  People who understand and practice real support.

To those of you out there who have shown that, and there are many, THANK YOU!  You aren’t unnoticed, or forgotten. 

Mark, Ursula & the Kids

 

Did you ever have one of those days where the harder you try, the worse it gets?  That was today.

Monday is always hard because we have to hurry and get school done and be at fitness class.  It’s hard to keep his focus on what he’s doing because he’s thinking he has to get in the car and go any second.  He’s unsettled to begin with, so schoolwork is a struggle.  Today we introduced new material and he just refused.  Nope.  Not going to do it.  I’ve never seen it before.  No.

I was almost relieved when we did have to leave until I heard him tell his fitness instructor no.  He’d never seen that way of doing a push up, nope, not doing it, no…..

We came home and he wanted to watch TV.  On what planet?  I reminded him that we still had some reading to do.  Nope, haven’t seen that book, no, not going to….

We pulled out some writing practice and I noticed that for some reason, he’s holding his hand out and up over the letters.  He’s been doing that more and more.  When I reminded him of the angle that worked best, you guessed it, nope, doesn’t work for me anymore, no…

Two weeks ago I was sitting in a meeting with several other homeschool moms.  One in particular looked a little more dazed than most.  She was saying she’d had a patch of rough days, wondering why she thought she could do this.  All she ever heard from her kids was…….. 

I remembered thinking she was scared.  She’s a really insightful, well-educated mom.  If anyone can, she can.  We all go through days like that.  You want to make sure to get it right.  There’s a lot at stake here, and no one knows that better than a homeschool mom.

Scared.  Of course!  The insecurity of his day was coming thorough like a beacon and I missed it.  What you know is safe, even when it isn’t always the best answer, or the potential isn’t met.  It’s safe.  Scary is breaking new ground and learning new words, new push ups, or worse, new people.  For me, it’s homeschooling with an autistic spectrum disorder along with half a dozen other moms, brave enough to want the best for their kids.  I can relate.

Today we backed off and went for security.  Ty is going to be bat-boy for our friend Bill’s softball team this evening.  Baseball makes him feel safe and needed.  He can relate.  Later, reading is with a bowl of popcorn and mom’s going to read his current favorite, The Ranger’s Apprentice for him.

I’m not ready to give in to insecurity.  If Ty can stick it out, we’re all going with him.  Nope, I’ve never seen anybody do it this way, but I’m not going to give in now.

Back on track in Tyland.

I usually stay on the up-beat side of things when I can.  Ty had a great day, which helped because it’s the same day we heard a No, we won’t cover biomedical testing for Ty’s autim, from our insurance company.  Biomedical, for those of you who are new to this, is about testing for toxins, infections and other hidden bio symptoms that the majority of autistic patients have.  But since the medical community hasn’t gotten over the “refrigerator mom theory,” or the “your child is fine at birth, but mentally ill at three-months-old and needs behavior modification, theory, most doctors are afraid to even do the simple blood tests to find out.  It’s on the same list of tests not covered as gem stone therapy, and flower essence therapy.

Still, I was happy to hear that so many were participating in World Autism Awareness Day by bringing the general public up to speed.  Heck, I was hoping I’d learn something new.  I did.

I learned that the head of the CDC can go on CNN and tell the world that she was unprepared to speak on the latest developments, because she hasn’t taken time to read reports that are several weeks old.  These are reports concerning a nation wide epidemic.  (And her job description again, was….?)

If this same reporter interviewed her and announced that some terrible biological agent had been unleashed on the United States by another government, and it would result in one new confirmed case every 20 minutes, all hell would break loose around the world.

So world, where are you??

Like a lot of other parents, I watch her public appearances, and take time to read her reports.  I see the difference in what she says from one year to the next, and spot the inconsistency a mile away.  We live this stuff day in, and day out.  We make the time.  It is in my job description.

I only have two questions for the doctor:

• If your child were diagnosed with autism, could you find the time?
• Is my child less important, or the twenty kids I just left at a baseball field for special needs kids?

If you don’t want to get into the world of taking legal responsibility, or opening the door to litigation, I get that.  Could you at least not be so arrogantly dismissive as to go on TV to honor a world awareness day and publically tell parents you haven’t taken the time to read the latest information to make yourself aware?  Where was the honor and respect in that?

It’s truly the definition of adding insult to injury.

Ursula

PS:  Dear Dad, Thanks for taking the time to teach us why it’s important to speak up when it counts.  I get it. ~U~

I got one of those rare glimpses into Ty’s thought process today.  This one was especially powerful for me because he initiated it verbally, and with a goal in mind.  It was also important to him that I understand his motivation, which is sometimes rare unless we’re talking about why his latest super-hero went after the bad guy.

We were driving around doing errands and it was clear he had something on his mind.  These are often the times he pops off with something telling.  I’ll try to give it to you in Ty-speak.

Mom, I need you to teach me to spell a few words.

Okay, which ones?

The ones that go with the pictures when I can’t find which bathroom.

You mean the ones on the bathroom door when we go out to eat?

Yes, they diffuse me.

Confuse.

I like diffuse.

Okay.

They diffuse me because sometimes they don’t show you the pictures.  When I gotta’ go bad, I’m in a hurry and the letters don’t make sense when I’m in a hurry, and I don’t have time to figure it out.

That could be a problem, you’re right.  Do you remember when we went over those earlier this year?

Yeah, but I don’t remember.  I don’t want to disappoint you, so I just watch to see if a man comes out, or a lady.  If it’s a man, I go in next.  If it’s a lady…(long pause and he wouldn’t look at me.)

If it’s a lady?

I think about it if I gotta’ go bad, but I don’t want any screaming.  It hurts my ears.

And then he changed the channel.  Suddenly, the conversation was smack in the middle of his thoughts on semi-tires.

I had to work hard not to laugh, which of course, he wouldn’t understand, because that was all serious buisness for him.  Still, I couldn’t help wondering what else he didn’t understand, or remember, but he was afraid to disappoint someone and say so.  I was thrilled to see that he was aware, and using visual cues without me telling him how.  But the best part was that he explained it all in a sequence of this, then this, or this, and then why.  Such a simple practice we put to use a hundred times a day without thinking.  An autistic kid has to actually think about it consciously every day—every situation, a hundred times over until each possibility becomes routine.  He has to decode every action, word, facial expression, and possibility like its another language.  It’s as if the interpreter didn’t show up for work at a high level meeting.

Wanted: Autism Interpreter.  Must work for hugs.  Should have a working knowledge of baseball, Egyptian history, and semi-tires.

Ursula

The Flyers Opening Day was a wash, in more ways than one.  The sky was getting darker by the minute, but Ty had been suited up since 8:00, waiting for a 12:30 game.  He even suited up to get an early morning hair cut with Mark, before the game.  Clouds or not, there was no way we were going to survive the day unless we at least drove to the field.

About a mile away we saw a huge streak of lightning just as we topped the bridge.  The thunder rumbled.  I noticed that it coincided with the shaking of Ty’s lower lip.  He’d been waiting months for this day.  All the way there he talked about playing catch with his buddy, Kelsey before the game.  “Me and Kelsey need to warm up.  We’re gonna’ hit rocket balls right over the fence!”  His voice shook and he watched the sky out of the car window.

We turned into the complex just in time to see the mass exodus of players and parents run for the parking lot in a spring downpour.  They were pulling the grills back up on the truck, and even the opening day picnic was washed out.  Tori kept reassuring him that the next game would still be the first game, opening season with all the festivities, but he didn’t hear a word.

Ty’s been working on control and proper outlets for frustration.  I could see his jaw clinch, which is always like the early warning radar system activating.  Then his baseball glove-covered-fist started spazing.  He had a Coke can in one hand and it was popping in and out.  We took it away when it transformed to a totally unrecognizable objet d’art.

He held it back while his coach, Jim Isom, leaned in the window, getting soaked himself.  He assured Ty that Tuesday we’d have opening night and it would be a blast.  The widow went up—the tears came down.  But like any spring shower, it was dramatic and over quick.  The general disappointment stayed as soggy as the ground for a couple of hours, but in the end, it all worked out.

Was it a total wash?  I’d have to say no.  As painful as it was, he learned a lot about handling disappointment.  And he saw himself control and channel his own emotions because he made a choice to.  Maybe he didn’t hit a rocket ball, but he sure hit a personal achievement over the fence!

I thought back to how he would have reacted a year ago.  I pictured a tornado ripping through as I wrote that.  But, he has come a long way.  It’s only been recently that I’ve understood what an accomplishment that is for him.  This is the part I hate about autism.  I didn’t really understand the degree and intensity of control and focus he needs handle his emotions.  Sometimes it takes every drop of energy he has.  He doesn’t always know what is okay and what isn’t.  He just feels the frustration building until he either implodes, or explodes.  Like a lot of others, I thought it was just a matter of teaching behavior modification, but it’s not!  It’s helping him understand even when he can’t tell me what it is that he can’t control.

The rain comes—the flowers get brighter.  The tears come—Ty learns to understand his world and how to navigate a little better.  I may have looked like a total idiot, smiling at an Opening Day rain out, but in our world, the flowers got a little brighter because Ty absolutely did hit it out of the park yesterday.

Happy Spring, everybody!

Ursula

I’ve added a new section called BOOKS.  Before you check it out, please be aware that if I don’t own it, or haven’t read it, it isn’t in there.  There’s a lot of written material out there, some of it more up-to-date than others, and some more useful in our world than others, despite the current popularity.

There will be several categories of books, including autism, homeschool, curriculum, and what ever else seems to cross our world as part of the journey.  I’m a complete bookaholic, so expect updates often!

The links also go to several other sites, some commercial, and some just a really good review, or screen shot of the Table of Contents, for example.  Please don’t consider that an endorsement of the site.  In fact, I’m also a bargain shopper and huge fan of the library, so shop around.  If you can’t find a recent copy on your library shelf, check the online used book sites for a bargain.

And as time permits, I’ll add an occasional book review on this site, too.

Ursula

Do you know what the difference is between 299.80 and 299.9?  Eligibility.  It’s the difference between qualifying for services to treat autism, and not qualifying.  Or if you really want to get technical, for the average American family, it’s the difference between being able to afford to give them to your child, or not.

One of these codes if I wrote it down correctly is, in med speak, autism.  The other is Pervasive Developmental Disorder, or PDD-NOS.  One is considered a medical diagnosis recognized by the federal funding programs, insurance, and medical professions as a diagnosis.  The other is considered merely a description for autism, and not covered by anyone but a terrified parent.

The parents I’ve spoken to make fun of the term PDD-NOS.  They consider it the term the doctors use when they don’t want to upset parents and actually say autism.  But more and more, what they’ve come to understand is that PDD is code for a funding loophole. 

According to the National Dissemination Center for Children with Disabilities, “All types of PDD are neurological disorders that are usually evident by age 3. In general, children who have a type of PDD have difficulty in talking, playing with other children, and relating to others, including their family.

According to the definition set forth in the DSM-IV (American Psychiatric Association, 1994), Pervasive Developmental Disorders are characterized by severe and pervasive impairment in several areas of development:

• social interaction skills;
• communication skills; or
• the presence of stereotyped behavior, interests, and activities. (p. 65)”

There are five types of PDD.  The number one type is autism.   Autism is a PDD.

Today we met with the local representative of the South Carolina Autism Society at the doctor’s request.  She was incredibly helpful in explaining our situation.  Apparently, because the doctor used PDD as the initial diagnosis, rather than the word “autism,” Ty may not qualify for services.  It’s all in the label.  We’re confused.  The doctor is the one that asked this agency to call us and get qualifieded.

Some people hate labels because they attempt to define a person, who is by their very nature, unique.  It’s an imposed limitation.  Makes total sense.  But like everything else about this flippin’ disease, autism, its definitions, and the need for labels that don’t label correctly make no real sense at all!

It’s quite possible that the diagnosis may be amended after the follow-up tests are complete.  Maybe he’ll qualify for this anyway.  Will he qualify for the insurance coverage?  We just don’t know.  I guess it’s one of the things that professionals consider routine, but forget to tell parents who are new to this process.  Several others we’ve talked to have told us that was their experience, too.  His medical history was certainly significant enough to qualify.  And as the rep said, pointing the checklist in my direction, “He hit every single category of the DSM-IV I have to assess, so it may go through just fine.”

I’m finding there is a learning curve to get through the maze of autism.  I’m a mom who has enough trying to understand my son.  Today was a last straw day.  Codes, definitions that are autism, but won’t say autism, endless paperwork, sleepless nights, and one basic understanding that explains it all:  No one understands what autism is, let alone the correct code.   Maybe the code for autism (PDD and all the rest of it’s related issues) should be WDGI.  We don’t get it.

My son understands it, and possibly your child.  With therapy, maybe someday they will be able to voice that and teach us all.  But not until we get rid of the need to talk in circles, and break it all down to fit a convenient check box on a form.  There’s nothing convenient about autism.  Not for parents, not for medical professionals, drug companies, or insurance companies. And not for Ty who will live with all the implied limitations that this label comes with.  What I do get is, without that therapy, none of us are ever going to understand it.

This code is for parents: NMRT

That’s the code for NO MORE RED TAPE.  We don’t have time.  Do you?

Ursula

“Perfectly healthy…..normal development………no damage” from lack of oxygen at all!!  WOOOOOO HOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Did you know that in 2005, the mummy of King Tut was removed from the tomb long enough to do an MRI?  It took 15 minutes. Today, Ty had an MRI and it took 20 minutes.  He thinks King Tut had it a little easier holding still, and that might account for the extra 5 minutes, but I don’t know.  I don’t think any kid could have done better.

When they called earlier in the week, they suggested an I.V. sedation for the test, so he’d be able to hold still.  I got that all over, mom-alert.  Nope.  I’m not putting even one more drug in his system unless it’s life or death.  Not until they figure out the how and why of autism. A dentist sedated him once years ago and he was so scared. There was no way I wanted him to feel that way again.  So all week, he practiced like an Olympic athlete, training for the MRI event.  He’d  be the mummy, trying to  hold still for as long as he could without moving his head, neck, or shoulders and he was doing pretty good.  I was impressed.

Today he went in without sedation.  With five minutes to go, I could see his breathing start to get more and more erratic.  His jaw tensed, then his mouth.  Even though we got to stay with him and keep our hands on his legs to let him know we were there, the tears started to roll.  Those are the times I feel like the most helpless person on the face of the earth.  Between the loud beeps and deafening whir of the machine, we would remind him about how to breathe through it, to think about baseball, you’re doing great, just a minute more.  Even though he was scared, he didn’t budge an inch.  No do-overs.

“We’re done,” the speaker announced.  The door opened and the tech started pulling the slide out of the machine.  Ty gave us a big smile, wiped the tears and told us the noise did scare him a little at the end, but he was really proud of himself for accomplishing it.

I don’t know who hugged tighter, me, or Ty.  But I know he handled it with the bravery of even the best Egyptian Pharaoh.

Ursula