What Are You Going To Do When Mom Is Dead?

Cameron took this pic last summer.

That was the question posed by Ryan to his younger brothers!  Within that question, Ryan touched on an aspect of life for all of us:  facing my own mortality through the eyes of my children.

For any parent of a special needs child, the thought of how his or her child will survive is a constant thought and concern.  For me, this has become more of a reality.  I face surgery again for the second time in six months to remove a tumor.  The first tumor was benign, and I hope it is again.  NOT that anyone has indicated that this tumor is life threatening, but leave it to a teen with autism to reduce life to the basics!

My husband and I have tried to raise our children to be independent, knowing right from wrong, enabling them to make good choices, and living without fear.  Well, we haven’t finished the job, and I want/need more time with my boys.  (Don’t we all?)

So back to Ryan.  He questioned his brothers because they weren’t doing their part to help with dinner.  They had also asked questions that bothered Ryan, questions about who had to do what when.  He got exasperated, and blurted out the question, “What are you going to do when Mom is dead?”  He continued, “You’re going to have to do it yourself.”

I was within ear shot, but I didn’t say anything.  I wanted to observe how the younger two boys reacted.  I couldn’t see their faces.  They must have been momentarily stunned.  Ryan did not relent.  His face continued to ask the question!  The younger brothers kicked into action.  No longer did they stall.  Instead of asking the questions, they volunteered to do the tasks. Within a few minutes, everything for dinner was done.

This is not the first time that Ryan has asked his brothers this question.  Ryan has become aware of my daily routine since he has graduated from high school.  Within the last six months, Ryan has matured greatly.  I’ve heard him say, “I better step up,” when he sees me get behind.

Ryan is growing up, and he is becoming quite aware of others outside his world.  For any young adult with autism, that is an accomplishment.  For a mom worried about the future of her kids, that is a great comfort!

This brings a sense of peace!

Happy Thanksgiving

I am grateful for many things this year.  My boys are surpassing many goals.  Opportunities are opening for them.  I appreciate my family, for supporting the boys’ endeavors in sports, music, school, etc.  I am especially thankful for friends who have asked about my upcoming surgery, so that they can pray for me.

So with the family gathered, food shared, and football games watched today, I realize how many blessing I have received this year.  Truly a Happy Thanksgiving.  I wish my extended family and friends the same–Happy Thanksgiving.

Paying For Therapies: Cash, Government, Insurance

Earlier in the month a friend had a discussion going about government mandated insurance.  She eventually asked me my thoughts.  Here are the questions followed by my response.

So do you agree with your state’s law mandating autism coverage? And for families without private insurance, do you think the state (federal, state or local government) should assist families who can’t shell out tens of thousands of dollars for their children’s autism treatments? I have to imagine that you have mixed feelings about these questions given your political beliefs.

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Sheryl Johnson You’re right. I have very mixed feelings. If I die tomorrow, would my kids be able to live independently? Maybe. We are thousands of dollars in debt. We have not let $$ be the reason to not do something for our boys. However, we haven’t thrown $$ into every new idea/fad out there. Parents of special needs kids are desperate to find a cure, solution, therapy, anything to move the kids forward.

My kids have private insurance as well as state coverage. The state coverage is minimal, and it can be revoked at any time. That has happened too. Can’t rely on it. When a service has been cut, we’ve paid cash to continue the therapy if it has been successful. The school and state have provided therapies, such as speech and hab, and they have helped my boys tremendously. 

The flip side is having to follow the regulations set by the school and/or state. Children, well, people don’t fit into nice rows and columns, ie rules and standards. Special needs children fit even less. Everything needs to be individualized. My kids are a great example of this. Three have autism. The standards cannot be applied equally to them, because the autism symptoms are different in each one. Due to govt regulations, though, the same set of applications has to be administered to each kid–whether or not it is working–which can be a waste of time, hence money. It frustrates the therapist and child.

Then there are meds. Typical medical protocol is to medicate my kids–especially when they were younger. The meds just doped them up. After 2 years, we took them off. I did a ton of research (and I still do). Alternative therapies have proven much more successful. Insurance doesn’t cover these. Doctors don’t necessarily agree with me, or each other in this realm. As MOM, I have the responsibility to do what is best for my kids. So I am self-employed to stay at home. (husband works full time) We pay cash for what my kids need. If you have known my kids for the last 10-14 years, you can see the progress.

So here’s the catch 22 syndrome… yes govt funded services help financially and therapeutically to a point. If my kids were stuck with govt restriction and typical medical protocol over the years, they would not have made any progress and most likely would be on some sort of govt program permanently. Yes, having freedom to research, choose, and pay privately has allowed our kids to thrive and prosper. More than likely, they will not need govt support as they move out of the house.

Tis typical for a family to pay $15,000 annually for a child with autism,. I have 3 kids. Do the math.  Here are the results.  One has totally recovered–no services from school or state. The other 2 have minimal assistance from the state, and one of those has some help from school–the other is moving on to college. We are slowly paying off our debt. Our children are thriving. It is a sacrifice, but that is what parents do. I can also go on and make comparisons of some govt services vs private services… but I think this is long enough. And this is just a touch of what I could write.

Surgery Is Scheduled And Now–

My upcoming surgery is scheduled for early December.  Just in time for the holidays!!  “Tis the most wonderful time of the year,” I think–sarcastically.  I could run a ton of songs in a very satirical story, aka sarcastic drone, but I need to be positive.

I have much to do before December.  Thanksgiving is around the corner, but I have already finished the required necessities for that holiday.  December is a different ball game.  I have to make arrangements for regular events as well as items pertaining to the Christmas season.

To start the preparations, Ryan and I went Christmas shopping today.  We went to a bookstore, as requested by Ryan.  Then we walked the local mall. We were searching for an item that we were told was only in a store that I abhor. 

Ryan and I walked in.  Ryan was not comfortable.  We hurried through the store, unable to find the item.  Ryan suggested that we’d get out faster if we asked someone.  Just at that moment, the sales clerk greeted us with a smile.  She was human.  She inquired, “Are you looking for something special?”  Something special in this store was an understatement.

“Yes,” I replied.  “I am looking for…”  (Can’t spill the beans here.)

Her smile brightened.  “We not only have that, but we have this!”*

*”That” and “this” have been substituted to protect the unknown.

So I bought the “this” and “that”.  Since the store had a “buy one get one half off” sale, I asked Ryan if he wanted a shirt with a logo he liked.

“No,” he blurted out.

I looked at him with a question.  He gazed back at me, saying, “I have enough things in my room.  I don’t need anything.”  It was a simple, straightforward answer.  Very typical of teenager with autism.

As we left the store, he smiled.   He was right.  We found the item faster by asking.  I knew why he was smiling–because Mom was the one who didn’t want to talk this time.

Funny how we all have our comfort zones.  Funny how life pushes us out of those zones, and we become better for it.  Ryan taught Mom the lesson today.

Going Under The Knife Again

No one likes finding a lump where it doesn’t belong.  No one likes hearing the word “tumor” from a doctor.  No one likes a encore performance of a tumor either.  I am no exception.

Within less than three months of having the tumor removed, I noticed the lump had returned.  Like I didn’t have enough fun the first go round.  I like roller coasters–real roller coasters.  I’m not much of a fan of emotional roller coasters.  I have enough of those with being a parent of teenage boys with autism.

After having to fight to get my medical records from the doc who performed the first surgery, the idea of searching for a new doc was exhausting.  I procrastinated.  Not a good idea when dealing with a tumor.  However, I just couldn’t pursue it.  I was emotionally dead to it.  There was so much already going on with my sons’ government agencies battling issues out, that summoning the required positive frame of mind was impossible.

Trying to explain this to people was futile.  They heard “tumor”, and they expected me to move on it quickly.  I got lots of advice, to look for this, that, and the other.  “Good to know,” I chimed out with a smile.  Nothing like extra pressure.

About the only thing I could do was ask people for referrals of a good surgeon.  Over a few weeks, I gathered several names.  I researched the backgrounds of the docs.  I narrowed the list down to three.  Then the list sat on my desk.

Last week, my mother visited me.  We discussed the doctors, and she wanted to know if I had called.  Unfortunately, I shook my head.  My mom was not impressed.  I tried to explain why, but that wasn’t going anywhere.  My mom was a nurse for a gazillion years, and needed medical attention is not to be postponed when she is around.

She dialed the doctor whom she liked, and set the ground work in motion.  Then she handed the phone to me.  I had an appointment within 48 hours.  I met the doctor.  Within a few minutes of meeting him, he called in a second doc.  They spoke and debated my case.  I never had a second opinion so fast.  Before I knew it, I was scheduled for another surgery and understood the procedures and possible scenarios.

My procrastination seemed stupid at this point. I am at peace with the forthcoming procedure.  Still, I’d rather not undergo another surgery.  Risks persist, no matter how good the doc and technology get.

Of course, I also think about how much I have to do to keep up with my sons.  Their needs don’t stop.  Even if I can’t move.  Phone calls, records, therapies continue.  Urg.  I’m trading one roller coaster for another.  Now I simply wait until I’m healed to ride a real roller coaster.  Yippee!!

Photo credit:http://www.flickr.com/photos/dhedwards/

Good Lord, Really??

Really?  I look at the sky as I sigh.  This time I say it aloud, “Really?”

Yes, I’m asking the Good Lord if this is what he wants me to face.  Like I can really do this.  I am not trained in this.  I don’t know what I am doing.  No map.  No guide.  No manual.

“This” in the last paragraph could be anything.  It could be autism, government agencies, doctors, etc.  So many aspects of autism and teenagers emerge, and I have no idea where to even begin.

I don’t like guessing.  I’d rather know what needs to be done and just do it. I like to see end results.  I also don’t mind if someone else sees the finished product and gives me a “thumbs up”.  I will listen to the “thumbs down”, but I prefer the former option.

With autism, there is no finish line.  Tis always a work in progress.  And these are boys, actually, young men now.  Not some project or task.  There are no days off.  Always going.  Always something.

I’ve told some friends that I really think God has mixed me up with someone who can handle this life I lead.  I’m just waiting for this person to show up.  Anyways, my friends and I laugh.  I think we all can feel that way.  Some aspects of life are simply bigger than we are, and we don’t have all the answers.

We just keep pluggin’ along.  And I ask the Good Lord for guidance.

photo credit:  Phillip F Chavez, PhD  http://masculinespirituality.com/site/

Smooth Dude

Nick chillin’

Nicholas has had a very busy semester.  He’s taking eight classes.  The norm is seven.  His school day starts at 6am with marching band.  He’s taking a full load, which is keeping him busy with homework and band practice.  His weekend doesn’t really start until Saturday night because marching competitions occur on Saturdays, sometimes running late til 9 or 10pm.

Today, Nick informed me that he needed some down time.  He pointed out how hard he’s been working, citing the proof in his grades and marching band awards.  I agreed.

Then Nick gave me that look.  He had something specific on his mind.

“Can I spend my downtime at Starbucks?” he asked somewhat shyly, yet with a smirk.

“Yep!”  I concurred.  I really couldn’t argue.

Nicely played, Nick. 

Your Boys Give Me Hope

Ryan, Nick, Cam.  A few years ago.  Windy beach day.

Last Friday, I was shocked.  I was leaving church when an elderly lady stopped me to ask a question.  “I hear your boys have a touch of Aspergers. How are you working with that? “

Several thoughts went through my head at once, yet I wanted to answer this woman concisely but thoroughly.  I must have hesitated too long.  She continued, “My grandson has been diagnosed with autism.”

Once she said that, I answered, “My boys have autism.  299.0.  No aspergers.  No high functioning autism.  Full blown autism.”

Her face reflected astonishment.  “I know your boys.  They are so polite, and they talk to me.”

Now it was my turn to be stunned.  I am always surprised when someone outside the family says that my boys “talk” with him or her.  How “talk” is defined by each person varies, but the social interaction of any sort is remarkable.  That makes me smile.  My boys are conversing to some level–independently.

Wow!

We continued our discussion briefly.  I outlined the therapies that have taken place in the last ten years.  I described the sensitivities and issues my boys faced back then, like non-communication and intolerance to transitions.  I mentioned the prescribed meds and the switch to a clean diet.

At the end of our five minute conversation, this woman’s face showed some sign of relief.  “Your boys give me hope for my grandson.”

That just made my day.  I was almost in tears.  I remember being in her shoes, hearing the diagnosis of my boys.  I know the long road that lays ahead of this boy and his family.  I am glad that his grandma can tell his mom that she knows some boys who are progressing well, despite autism.  Or better yet, with autism.

The Path After Graduation Began…


The first step to getting Ryan on “a path” was to tell him that he can’t stay in our house and do nothing. This was in response to a comment he made a couple summers ago about wanting to be independent without responsibility. That is just not going to happen.

Mike and I told Ryan that he needs to make some goals, and he needs to be doing something constructive.  Otherwise, I am going to continue “strongly guiding” him on what to do–or arrange for him to be doing things—which may not be to his liking. Our focus is to find a trade or career path that “zing” that Ryan will enjoy and can be financially independent.
Ryan’s big priority is his book, so I have tried to relate everything and anything towards that. Currently, Ryan is taking introductory computer classes at the local community college.  The reasons for these classes are twofold:  to see if Ryan can handle collegiate level classes and to help develop computer skills for potential employment.
I’m taking these classes simultaneously with Ryan.  We don’t sit next to each other; keeping our mutual independence is vital.  However, Ryan is enjoying the experience of tutoring me.  He has called me “entertaining” a few times, because I just “don’t get it”.  Obviously, he “gets it” with ease.
The photo finishing class is an attempt to open a door to a trade. I wrote how this came about in an earlier blog entry.  This class will offer an opportunity to Ryan if he wants to illustrate his book in the future. The teachers were impressed with his computer skills, so they think he’ll learn the material quickly.
Ryan is also on this kick of anything related to Japan.  He likes the antiquity and culture.  An former coworker of mine used to live in Japan. She is teaching him–very much home schooling style.
Within the last several weeks, Ryan has committed to writing five pages a day for his book. That is a chapter a week. He is really proud of maintaining that, and we encourage it.  We push the other items too. 
Always trying to keep a balance!

Guiding A Young Adult With Autism


“Six month ago, I was (somewhat) concerned about my 19 yr old, that once graduated, he’d have nothing to do. Well, 3 computer classes (and tutoring me in those), photofinishing classes, Japanese classes, writing his book… and now he wants to resume martial arts. AND yeah, this is a young adult with autism!!! I’m in AWE. (he’s doing well thus far!)”
I posted that “status” yesterday on Facebook.  It’s a very positive statement.  Sounds successful too.  And it is.  However, this “status” is a step along an unknown road.  What I didn’t write is how Ryan arrived at this point.  The steps were many.  Sometimes painful.  Never easy.
Tomorrow I’ll try to outline the reality of steps we traveled.  One must keep in mind that Ryan is not alone on this path, although now he is in much more control.  That is mixed blessing!  
As parents, we face this is a strange, new road:  a young adult with autism.