Autism: Surviving and Thriving

Twelve years ago my youngest 3 boys were diagnosed with autism within a 9 month span. Devastation and grieving followed. Doctors gave me little or no hope, but they didn't know me very well. I refused to believe that my boys were doomed.

My boys are now young men, adults with autism. They are thriving, but every day presents its turmoil and challenges.

My family: husband Mike, sons Ryan 21 yr, Nicholas 19 yr, and Cameron 15 yr. (Ryan and Nick have autism; Cam has recovered from autism.) Our oldest sons, Michael 31 yr and Stuart 24 yr, moved out of the house.

Thursday, March 24, 2016

Beneficial Beans: What Is It?

Beneficial Beans is a fully functional coffee house located in a library.  The main purpose of Beneficial Beans is train and provide employable skills for adults on the autism spectrum.  It works in conjunction with SARRC (Southwest Autism Research & Resource Center) in Phoenix.

To learn more about Beneficial Beans or SARRC, click on the link below.

http://www.autismcenter.org/beneficial-beans%C2%AE-caf%C3%A9

Wednesday, March 23, 2016

Ryan's Reveling in Coffee

Ryan and Aaron
Today is Ryan's third day on the job at Beneficial Beans.  He is greeting customers, filling orders, handling moneys, receiving instruction, and he is happy.

His coach, Aaron, works side-by-side Ryan, teaching him the ins and outs of the coffee beverage process.  Aaron has an easy-going spirit as he instructs Ryan.  Yet, Aaron still maintains the integrity and standards of the business.  What a great combination for a working environment, especially for autistic adults:  structure within a relaxed setting.




Tuesday, March 22, 2016

Ryan's New Internship: Communication Via Coffee

Imagine having to think of the word, "Hi," and then say it.  Imagine forcing yourself to smile to greet someone.  Imagine remembering to focus your eyes to meet another person's eyes.  Imagine processing all these actions simultaneously.  THEN, imagine preparing yourself to process what the other person will say or do.

For most of us, this is a simple process.  With autism, it is a check list:  how to greet someone!

Yesterday, Ryan started a 12 week internship at a coffee shop specifically designed to train adults with autism.  It is called Beneficial Beans.  Through this internship, Ryan will learn how to make sophisticated coffee drinks, but that is simply a means to teach him about communication, interaction, customer service, etc.  People skills.

Ryan can talk.  In fact, he can be quite articulate.  Other times, he can isolate himself in a crowd and be at peace in his own world.  Like most in the autism realm, connecting with people can be a challenge, let alone mentally exhausting.

My hope is that Ryan will be more at ease when conversing with other people.  That may sound simplistic, but with autism, no encounter with another person is easy.  Maybe, Ryan might even come to enjoy other people's company.

Imagine your son wanting to share his ideas, dreams, goals.  I can't wait to hear what Ryan thinks!  As of now, I can only imagine...

Sunday, February 14, 2016

Lord, Please Give Me Coffee or Give Me Wine

I love this quip (see photo). I use it as part of my "signature" in all my emails.

Of course, it’s a spin off the Serenity Prayer, but I much prefer this adaptation.  It’s much more applicable in my life.  I drink coffee.  I drink wine.  I drink coffee to be alert and DO.  I drink wine to chill and RELAX.  I know I’m not alone.  I know many moms, especially moms of special needs kiddos who rely on this mantra.

With kids, every mom has a daily to-do list.  If you homeschool, that list is even longer.  I have autistic teens.  My list, well, I’ve learned to call it a wish list.  No matter how I plan, life just throws a curve ball, and I have to adjust.  Sometimes, my kids don’t understand an assignment which I thought would take little time to accomplish.  Other times, I get a call from a therapist, doctor, or Mr. WhoknowsWho, and wham, I have to deal with THIS situation right away.  Of course, THIS situation blows up my to-do list.  Hence, now it;s a wish list.  Maybe I'll get to it...

What am I going to do?  Complain?  Probably.  Will it help?  No.

Sigh.  That’s when I ask, “Dear Lord, what do you want me to do?”  I have to admit it is more fun to pray “Lord, give me more coffee to change what I can change, and wine to accept what I can’t.”  However, it is actually helpful to hold a cup of coffee to slow me down to think of what I should do.  It helps to hold a glass of wine to reflect on what I need to accept. Obviously, I don’t do this ALL the time, but the idea still holds.

SO, I have learned to have a plan and be flexible. I have to remember that the Good Lord is in charge, and what I thought was important may not be so important.  I pray that God will give me what I need and when I need it.  It may be simply more coffee or more wine, depending on the case.  Maybe it will be just a moment of silence to distinguish His will, and that is enough.

Sunday, January 24, 2016

Dean's Debut

My grandson, Dean, was born this morning. He is 21 inches and 8 pounds.  Good size; healthy boy.  Yet, I cringe.  With a new life, there are so many dreams.  No one wants to think of disabilities and shortfalls.  However, I have to admit I am concerned about a lurking disability in his future.  I have talked with my son about potential dangers that could trigger issues, but "it" is still an unknown.  Since our sons' lineage showed no inherited disabilities, we had very little concern, but BAM, four of our boys were hit.  Stuart had a speech delay and speech impairment.  Will his son have the same?

Of course, I'm not bringing this up to anyone at this time, but it is a thought in the back of my mind.  I am not the parent.  I really can do nothing but watch.  I can coach my son.  Maybe give advice if he asks, but I can take no action.

After four boys with special needs issues and constantly in active mode, this is different for me--being quiet in the background. I've learned to speak up and quickly.  Sometimes loudly.  Often repetitively.  I could be in the doc's office or school meeting.  The squeaky wheel gets oiled!  If I spoke up, gently but assertively, my boys usually received what they needed.  Being quiet usually yields nothing.

For now, we enjoy the birth of our first grandson, and quietly I will have to rely on a little bible verse: Matt 6:  33-34.  33"But seek first His kingdom and His righteousness, and all these things will be added to you. 34"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough troubles of its own.

Thursday, January 21, 2016

No More IEP Meetings!

Today Mike and I attended our last IEP meeting. Yippee!  I counted 47 IEP meetings, at least, since 1997.  Two of our younger four boys had varying disabilities, ranging from speech impairment to autism.  Both of them, Stuart and Cameron, have sufficiently progressed to function as neuro-typical kids!  The other two, Ryan and Nick, still have autism, but their progress is no less remarkable!

So what is an IEP?  Basically, it's a written contract in which educational goals are written for the individual with special needs.  Its focus is to educate the individual person, geared towards the issues and abilities of said person.  IEP stands for individual educational program.

These meetings can be stressful and grueling, or they can be uplifting and reassuring. HA.  They are usually grueling.

The participants are comprised of teachers, a psychologist, therapists, parents, and student, called the TEAM. Frequently, the school staff discuss the goals of the student before the meeting, though I don't think anyone would really admit to that.  When the meeting commences, the goals are already written.  If the parents agree with those goals, there is no problem.  If the parent disagrees, then PROBLEM.  It can become a battle or a downright WAR.

Sometimes our meetings would last three hours, and we'd have to postpone any conclusion.  Those were horrific.  Our child's needs were not being addressed appropriately, and as parents, we had to ensure they were.

And the paperwork!  I have four binders full.

Over the years, I learned that certain vocabulary terms were necessary to get what my child needed.  Also, what one school could do was different from what another school could do, even in the same district.  Some special ed classes were offered only at select schools.  The staff, depending how dedicated to the student, may or may not want to implement other goals.

Quite often, I felt like an intruder rather than a team member.  I always had someone else accompany if possible.  Whether it was my husband or father, having an advocate helped streamline the meeting.

Not all meetings were terrible.  Some could be pleasant, especially if I knew the staff.  Getting to know the principal, secretary, and teachers helped to get my children what they needed.  I volunteered a lot.  That made a huge difference, and my boys prospered.

So with this last IEP, all my boys are moving toward adulthood.  As they transition into the "real" world, my life also adjusts.  There are no contracts with employers or colleges.  I am concerned how my boys will progress, but as always, it's one day at a time.  Seeing how they have succeeded thus far, I am confident they will find their way, and I will find mine.

GOOD BYE, IEPs!

Wednesday, January 20, 2016

Cameron's Capers

My youngest has sprouted in the blink of an eye.  It seems as if it were yesterday when we were teaching him how to walk and talk--for the second time.

Cameron experienced a traumatic reaction to the MMR shot, rendering him having to relearn everything.  He also had to overcome issues that did not exist previously.  He became self abusive, and well, there's quite a history, of which I have written previously in earlier entries.

I now look at my son, who was diagnosed at age 2 with autism.  He is now a young man, learning to drive, going to formals, attending honors classes, and looking towards a promising future.  I never take for granted his progress.  I am grateful.  His endurance and strength give many others hope.

Cameron does not remember those tough years.  I remind him occasionally.  He needs to know how severe he was, so he can appreciate where he's going.  I hope to teach him compassion for others as well.  Sometimes, when a person overcomes weaknesses, that person has a difficult time being patient with others who suffer that particular weakness.

I've watched Cameron mature and grow.  I'm impressed with his quiet demeanor and sometimes laugh at his subtle sarcasm.  He's a force to be reckon, so he still needs guidance, as a young man should.