On The Second Day Of Christmas

We went shopping for some new items for the Christmas Tree.  We also purchased wrapping paper and Christmas cards.  Why now?  I like the 50% discount off the regular purchase price of these items!!  I usually send out cards after Christmas, and I'll use the solid color wrapping paper throughout the year.

We started celebrating the 12 Days of Christmas several years ago for many reasons.  I've blogged the whys and wherefores in years past.  I will reiterate the main reason here:  it is much easier for kids with autism to handle.  Less is more.  The less to process, the more enjoyable for all of us.

We stretch out the gifts and activities for 12 days.  That might sound expensive, but it really isn't.  We have a box for each day, and the gift is for the entire family.  For the next two weeks, we'll spend more time together.  The gifts are usually simple, but a few might be extravagant.  They always focus on family.

Best way to spend our effort, time, and money:  family!

Best Christmas Gift: All My Sons Together

Nick, Stuart, Ryan, Cameron, Michael

Not exactly a Christmas photo, but it was taken a week ago.  They had planned a garage sale together.  They all contributed in some manner, and they split the profit.

I don't get to see my boys together very often.  Mike moved out a decade ago, so activities that include all of them are rare.

I enjoyed seeing them work as a team, and getting along.  So many times I hear that siblings don't get along, especially when special needs like autism are involved.  Best Christmas present a mom could ever get!

Merry Christmas!

Lessons With My Granddaughter

Last Saturday, I spent some time with my granddaughter.  She was diagnosed with autism when she was three, and I was curious to see how she was progressing.  We decided to hang out at a coffee shop.  At first she was quiet.  I asked her simple questions. She responded with one word answers. Typical for a youngling with autism.

We decided to go Christmas shopping for her mom and dad.  I asked her specifically what she might want to give to her parents.  After some thought, she replied, "Nail polish for Mom, and a I-pad for Dad." The I-pad was out of my budget, but with the idea of nail polish, we started shopping.

I asked her if she knew where we would find nail polish.  I realized that I had no idea where to begin to search.  My darling little granddaughter took charge.  She was hysterical.  "Come on, Grandma.  This way."  It became obvious that my granddaughter was not too sure where to go either, but we admired a myriad of delightful objects as we walked.

We actually wondered through several aisles before finding the right place.  She acknowledged, "Hair stuff."  She slowed her pace to look at the barrettes, combs, and headbands.  I inquired, "Do you like this stuff?"  She looked at me like I was from outer space.  Her response, "Yes.  Of course!"  She began a dissertation on what the items were.

I was surprised at how many different things there were to adorn hair.  My granddaughter touched every item she could reach.  Some were sparkly; others flowery.  We slowly made our way to the nail polish aisle.  Again, I was surprised at the variety of brands, let alone colors.  I just don't have time to pursue hair and nail paraphernalia.

My lack of knowledge bugged my granddaughter.  She gave me lessons in "girl stuff". In her words, "REALLY, Grandma!! (Sigh.) This IS what girls like. Sheesh."  I laughed.  I didn't know this "stuff" could be fun.  She picked out one color for her mom, and off we went.

So I need to continue my lessons with my granddaughter.   SHE is what made this lesson FUN.

Tumor Is Benign--Again--Yea!

Surgery went well--for the second time.  Tumor was benign.  Deja vu, but this was no illusion.  I will have two scars to prove that fact; they almost make a lightning bolt.  The question now is how to move forward.

All my boys are aware of my predicament--trying to reduce stress, and occasionally they try to make life easier, lighter, or happier in some way.  For example, we grind our own grain to make our own sourdough bread.  I found this smile in the flour, courtesy of Ryan.

I cherish these silly moments!   

Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii!  What a year it's been to get them there.

We found out last February that the marching band at Nick's high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade.  Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions.  This year Nick's high school band placed third in the state competition.  Tons of hours practicing.  The band meets at 6am every weekday morning before school.  Then they have evening practices and weekend performances and competitions.  BUSY.

Marching in parade

Then the fundraising to get Nick there.  The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating.  Nick wrote many letters to family and friends to help contribute to his account.  So this endeavor is the result of many.  MANY.

Once funding was successful, another contingency surfaced:  supervision.  We did not trust anyone with our child.  Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult.  Mike and I had no idea how Nick would react being on a plane.  Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications.  The only acceptable solution was for Mike to be a chaperone.  I was told that "the IEP would be taken into consideration when choosing chaperones".  That did not give me any consolation.  Then came the email from the band booster president that a lottery would be held to pick chaperones.  I was completely on edge then.

After several correspondences with the band teacher and Nick's case manager, I made it clear that the only person who would be appropriate to help Nick was his parent.  A fellow class mate or another adult would not suffice.  ESPECIALLY if some emergency happened.  They couldn't just call us, and we'd be there within minutes or even hours.  This was a safety issue.

I am not sure what conversations were held on Nick's behalf when the selections of chaperones were picked.  When the list was publicized, Mike's name was on it.  Relief.  Now we had to come up with the funds for Mike.  As always, money was not going to stop us from pursuing something that would benefit Nick.  Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime.   Yes, there's a lot of "behind the scenes" that I did to help make this work.  Lots of mental preparation for Nick.  Not just band practice.  Practice sitting in close confinement.  Practice talking softly.  Practice...

I think the effort is worth it.  Nick's smile says it all!

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.

 ·

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.

Today's Gem

My 17 year old son asked me a simple question this morning, "Mom, since I've been working so hard this week, could we go get some coffee?"  (Do know that, when the boys want to go out, the boys pay their own way.)

Phrased that way, it was difficult to say no.  In fact, I agreed.  "Let's go," I responded.

When we arrived at the coffee shop, Nick was ready to order.  He paused, and turned around.  He looked at me with a slight hesitation.  Then he blurted out, just so I could hear it, "I want to save my money and use yours."

I started laughing, but I realized we were holding up the line.  It was not the moment to discuss anything, which I knew Nick would want to point out his logic.  Quickly, we ordered, and I paid for the drinks.

When we sat down, I explained to Nick that yes, he has worked hard this week, as always.  However, that does not entitle him to use my money.  (Yet, I did pay.)  I told him that he will owe me the money when we get home.  And yes, he did pay me back, with a silly grin on his face.

It was just a funny moment.

He understands the concept of saving money, but it's ok to spend Mom's money instead.  Or maybe there is more underlying his creative thought process.  Sly.  Very sly...  In either case, he made my day.

So many people believe that teens with autism don't think outside the box.  Well, they do!

Fighting For My Medical Records

Last week I had to contact the surgeon who removed the tumor because the tumor has returned.  I found out that this surgeon is no longer at the office.  I was never notified that the doctor was leaving her practice.  I was given a number of her answering service and told that my message would be passed on.

The next day I called again and was more specific about the urgency of receiving a return call.  I was immediately connected to the doctor.  She seemed rather cavalier to learn about the tumor.  She conceded, "It certainly sounds like it's back."  This doctor referred me to another surgeon and said she'd be glad to release my records to him.

I called the office again and asked for my medical records.  The person I spoke with said that the doctor had taken all of her records, and the doctor would only release them to another doctor.  I said that was illegal.  I could hear a sigh from the other person, and she said, "You will have to take that up with the doctor."

I cringed.  Why is this doctor not willing to give her patients their medical records?  With all my encounters with doctors regarding my boys' autism, I have never been denied medical records.

I read the state medical board website which confirmed that this surgeon could not withhold my medical records, especially since this was a case of "continuity of care".  I studied and memorized several phrases from the website.  I sent an email using several of these phrases and formally requested my records in writing.

The next morning I called the answering service.  I emphasized to the person taking my message to include "illegal to keep my medical records".  The call ended, and I was closing my flip phone when it started ringing.  The surgeon herself was on the phone.

I explained I wanted my medical records, and she could not withhold from me legally, especially under the "continuity of care".  She gave me several reasons why she wouldn't release my records.  This surgeon obviously doesn't know me.  I am not going to take no for an answer.

The first excuse was, "I'm treating all my patients the same..."  I cut her off.  I didn't care.  I repeated, "It's illegal for you to withhold my medical records."  She was willing to release my records to another surgeon or primary care physician.  For every excuse or reason, I simply repeated the mantra "It's illegal."  She finally agreed to fax them to me.

The next day she called me to say that she couldn't release my records without a written consent.  I told her about the email.  She looked and verified that she had it.  Within two hours, my fax happily printed out my medical records.

I remain suspicious as to why she didn't want to release them.  I read them and found nothing weird or unknown.  I am disappointed that I had to spend the time and energy fighting this battle to get my records.  This doctor stole time and energy that I could have spent with my boys.  This doc will never understand the impact of her actions.

Tumor Again?

This tumor that was removed has decided to visit again.  It is growing under part of the incision and extends well beyond.  I am not a doctor, so this is my simple, humble opinion.  It feels and looks like the tumor that was removed; however, the speed in which this has developed is much faster.  So am I positive it's a "tumor"?  No, but if it walks like a duck and acts like duck, chances are that it is a duck.  I do like some sequels.  This is one I could have skipped.

Whatever this thing is, I would not be surprised if this is related to stress.  Lots of people "encourage" me to get rid of the stress in my life.  Sure!  I am not a fan of stress, but stress is innate to a mom of special needs kids.  It's just part of the terrain.  It's not like a computer where a person can hit the delete button, and it's gone.

Life!

I Want To Be Like My Big Brother

Ryan, Nick, Michael, Cameron

When the boys were in elementary school, teachers often had them write about whom they admired.  Without fail, the answer would be, "My big brother."

With four boys still in the house, many assume the younger boys mean Stuart.  While Stu is fun-loving, hardworking, and admirable, he is not always the big brother being referenced.  In our family, the big brother is the the tallest, ie 6'2".  Literally the BIG brother.  Michael.

Michael has been out of the house for a decade now.  He lives about a mile away.  Far enough to live his own life, but close enough to help.  Michael knows the challenges facing his little brothers, and many times he takes them to offer me reprieve.

My younger sons usually like going over the Mike's because they get to play video games, eat (gluten free) fast food, drink sodas, stay up late, and do nothing.  Then there's the flip side.  Mike keeps them busy.  He usually has a project or two going on.

This month they are making a bench out of an old bar.  The plans for the bench hang on the garage wall.  The wood and tools cover the floor.  The boys show me various aspects.  Each one voices what he likes (or doesn't like) about the project.  They like using the tools.  The loud noises--not so much.

Mike has a knack for solving problems, like getting the boys to work together on a project that is new to them.  They might complain at first, but ultimately, they have a good time completing the tasks at hand.  They then have a great sense of accomplishment.  Priceless!

Potential Job/Career Idea!!

Last year I found a group that meets monthly to help kids with autism transition into adulthood.  These meetings feature speakers or events.  Last night Ryan and I attended the meeting that debuted a family business looking to train and hire teens and young adults on the autism spectrum.

That is highly unusual.  Autism usually strikes fear is employers.  This business is SEEKING THEM OUT!

I was very hopeful, but also very suspicious.  My teens with autism want to be independent.  I want them independent.  With 90% of autistic adults unemployed, this could be such a blessing!  But who looks for autistic teens?  Well, we went to find out.

The speakers were from a family business--four generations in the business.  The fourth generation, the son, has Aspergers, which is a form of autism.  We heard the family history, and the success of the business.

These parents realized the success of their son was due to his symptoms of Aspergers--focusing for long periods of time, perfecting the details, wanting to work alone, etc.  I could see both of my sons fitting into this description easily.

I was quite impressed with the family's plan for their new business venture.  It covered everything from basic training to career opportunities.  My thoughts jumped:  job training; financial security; solid career; personal fulfillment--ideas that many parents worry about their kids with special needs.  This seemed to be an answer.

The only downside is that there is a cost.  Not that it's expensive.  But money is money.  Since this is a pilot program, there is no guarantee or track record of success.  And will my kids really like it?  Oh!  Moms can be so worrisome.

Well, Ryan and I are exploring the opportunities presented last night.  The timing may not be right, but this is at least an opportunity.  It's so important to have a path, a direction in life.  Even Ryan acknowledges that!  So, here's to some research and maybe a sale-able trade!

To My Sons' Grandparents--On Grandparents Day

Thank God for grandparents!! They spoil our kids.  They give forbidden treats behind our backs.  They let the kiddos stay up late.  Grandmas might even bake gluten free cookies for them.

For parents with kids with autism, grandparents can be more than the mellow, nice version of the people who raised us.  Grandparents can offer wisdom and reprieve to parents with shaken nerves and overtaxed brains. 

My Mom

The flip side is that grandparents can give suggestions (or criticize) and cause more stress, although their intentions may have been good.  Grandparents may only see their grandkids with autism occasionally and not understand the intricacies of daily life.  Visits can be bittersweet.  Taking time to chat can be a hardship, but constant routine is necessary in the life of autism.

My Dad

In my case, my parents are about 40 miles away--far enough to breath, close enough to help.  They know most of the tasks and goals of my sons with autism.  This last summer they took on the task of helping the boys passing their drivers permit test.  Goal accomplished.  With LOTS of patience.

Mike's Mom

My husband's parents live in another state.  Their visits are fewer.  They can see more distinct progression or regression; something that we might miss.  They always want to know what's going on, to help the boys.  Sometimes it's hard to describe everything concisely, but we try. 

Mike and his Dad

Both sets of grandparents help at family gatherings and events.  Loud noises and strange people always stress out the boys, so having those extra eyes and hands of grandparents can help ease anxiety--both of the boys and me.

I'm very grateful to both sets of grandparents.  Happy Grandparents Day!!