Autism: Surviving and Thriving

Twelve years ago my youngest 3 boys were diagnosed with autism within a 6 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.

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.


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.

Sunday, December 27, 2015

Battle of the Cardboard Swords

After wrapping presents, the cardboard "swords" always tempt the boys to play.  As they have gotten older, nothing has changed.

Two cardboard rolls awaited them.

Cameron and Nick picked them up and dueled in the unspoken challenge.

They took turns charging, hitting, and retreating.  Then Nick took a swing.  Cam lost most of his sword.  In utter disbelief, Cam tried to piece it back together.  Nick smiled victoriously.  Cam acknowledged his defeat.

Sometimes the silliest thing are the best!

Expectations, Interpretations,and Assumptions

As we prepared for Christmas, I asked my youngest, 15 year old Cameron, to help me wrap presents.  I asked him to get the tape.  He came back with duct tape.  He then proceeded to "wrap" presents with the duct tape.  He even put a bow on one.  He thoughtfully marked who the presents were for with a permanent marker.  Very efficient and expedient.

Living with all males in the house, I forget that their interpretations of words might be different than mine.  Through my experience, whenever tape was mentioned, I didn't hesitate to get the scotch tape, so why would my son's be any different?  I assumed he would know.  However, his experience with tape has been duct tape, because duct tape fixes EVERYTHING.  His dad has taught him well.

Although my expectation was not met with what I assumed Cameron would get, I was happy.  He interpreted my words and did as I asked.  His version of wrapping resulted in a much different look than my version.  That's ok.  He helped, and we had fun wrapping in our own style.

As we gave family members their presents, they got a good laugh.  It all added the celebration of Christmas.

Saturday, December 12, 2015

Water Rafting in Alaska

While we were in Alaska, we actually did activities together.  One was water rafting.  Water was a balmy 37 degrees (F).  As the ice glaciers melt, the water gets COLDER during the summer.  No, Mike did not consult me on the water temperature.  I've always liked water rafting during the summer, so why should this be different?  Ahh, maybe the water would be cold??  It was!!  However, it was worth it.  The scenery was breathtaking.  Beautiful sunshine.  (Some) snow on the mountains.  Crystal clear rivers.

We also got a professional portrait of ourselves done on board the ship.  Mike said we should do things that we don't normally do.  So, here is our official 25th anniversary photo together!

Friday, December 11, 2015

25th Anniversary Get Away

For the first time since the boys were diagnosed with autism, Mike and I took an extended vacation. Fourteen days of just us!

Mike did all the planning.  He attended to all the details, even flowers, chocolates, and champagne.  We cruised the Alaskan shores and partook in many inland excursions.

Scenery, adventure, and wild life abounded around us. We even got to trap crab. Yum! We ate a ton of crab for lunch. 

Mike even participated in one of the cruise shows- a cooking contest.  He took second place!  I just had to show up.  The cruise truly celebrated 25 wonderful years of marriage!