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 20 yr, Nicholas 18 yr, and Cameron 14 yr. (Ryan and Nick have autism; Cam has recovered from autism.) Our oldest sons, Michael 30 yr and Stuart 23 yr, moved out of the house.

Monday, March 16, 2015

Ryan's New Place

The realtor told us that there was a waiting list.  She encouraged Ryan to apply because she never knew when there would be an opening.  She could not tell us, an average, what the wait might be.  She encouraged Ryan to submit an application if he wanted to move sooner vs later.

When Ryan submitted his application a month later for an apartment, he was informed that there would be an opening at the beginning of the next month.  That was a lot sooner than we anticipated.  Ryan, his dad, and I agreed that Ryan would probably be more successful on his own if we had another year to refine several life skills.  A month to move out pushed our "schedule" up by 11 months.  However, Ryan agreed to take the apartment enthusiastically.

The month passed quickly.  We planned and focused.  What would Ryan need immediately?  What could wait?  What could he borrorw?  Could friends and family donate items?

Within the month Ryan asked if he could take an item, or he pointed out that we don't use that thing.  He slowly accumulated a few tools and pieces of furniture.

His moving day quickly arrived!

His idea of packing was very different than mine, but then again, he had never moved.  I showed him how to pack breakables, and the rest went as he saw fit.  We rented a truck, and the move was done with the help of his parents and brothers.

Since he didn't have much, it didn't take long to move and set up.  When all was done, he transformed a "tin can" into a home.  I was impressed.  His living room had more functional furniture than I did after a few yeas of being on my own.  His furniture actually looked nice as well.  Not too bad for a bunch of hand-me-downs.

Ryan enjoyed it all because this was HIS place.

Sunday, February 22, 2015

My Precious Aunt Pearl

Uncle Bill, Aunt Pearl, Sheryl
Last summer I travelled with my mother to Michigan to see relatives.  I had concerns about how my kids would manage without me, but I needed to go see some special people, my Godparents.  Too many years had snuck by, and their health was not the best.  This trip would also give my kids an opportunity to learn how to manage without me.

My mom and I spent five days traversing her old stomping grounds.  We met up with a few of her siblings and spouses and my cousins.  Her oldest brother and spouse, my Uncle Bill and Aunt Pearl, are my God-parents.  I first remember meeting them on a cold December night, when we were visiting during Christmas vacation.  I never knew snow could be so cold, and I understood why my parents left the freezing temperatures of the Midwest for the mild weather of Southern California!

During that December trip, we stayed with my Uncle Bill and Aunt Pearl for about a week, not venturing out much because of the cold.  For entertainment, Aunt Pearl gave my sisters and me some tips to playing the organ (although we played the piano).  We also baked, cooked, played cards, and bunch of silly things to pass the time.  It was simple fun!

After that trip, I started writing my relatives frequently.  I sent photos and letters whenever a special event in my life occurred.  My cousin, Anne, was really the only one who responded with regularity, but she kept me apprised of all in her family.

So it's been over 40 years since the December trip, and now my mom and I visit the same people, albeit much older.  Time had changed our physical features, but the same spirit of spunk remained.  I spent some one-on-one time with my Aunt Pearl.  She was still spry and sharp--at times.  When she wasn't, she said something, probably in Hungarian so I wouldn't know that she probably said something she should not have.  Then she smiled and cursed her "forgetfulness" or "slowness" with renewed patience and grace.  She laughed heartily, and carried on.  We all knew her time on earth was limited, as is all of ours.

I remember her laugh from 40 years ago.  Nothing loud and annoying.  Just a hearty laugh.  It was truly an endearing exclamation of joy and happiness.

Last Friday I received a call, informing me of my Aunt Pearl's passing.  Her family had gathered at her side, and she passed quietly.  I pray she passed peacefully.

Dear Aunt Pearl, I hope the heavens are filled with the sound of your joyful laughter.  Love, Sheryl

Wednesday, February 4, 2015

Ryan Moving Out?!

Ever since Ryan was a baby, he wanted to be independent.  As soon as he learned to walk at nine months, he was in constant motion.  At ten months, he was running.  He wanted to be where he was not.  Wherever we travelled, he explored his environment with great speed and enthusiasm.

As a toddler, he played with his toys by himself mostly, but he did laugh and enjoy his older brothers' company.  I could hear him laugh with them.  He also loved to run with them.  He was a natural at distance running, which he had to be to keep up with the bigger boys.

As autism emerged, Ryan isolated himself into his own world.  I reflect back, and I surmise it was easier for him to exist.  He lost most of his speech.  At age four, he had command of 31 words, 15 of them were more akin to grumbles than real words.

Over the years we encouraged him and helped him learn to deal with our world.  He has grown into a young man of hidden talent, incredible imagination, and indisputable intelligence.  He can communicate well with anyone who asks him questions.  Most people would simply think he is a shy person.

He has wants and dreams like anyone else.  He craves to be recognized as an individual.  I respect his desire to move out and be responsible for himself.  Early this month we submitted an application for an apartment.  Pending that approval, there is an apartment vacancy coming at the end of the month that Ryan was offered.  Ryan enthusiastically accepted.  Ryan smiled.

Ryan's photo work
As a mom, my goal is to raise children who will move out and be their own persons as adults.  My love is to push them out the door, ultimately.  My two oldest sons have moved out, and I happily let them go, with a slight twinge of bittersweet pang.  With Ryan I have more concern and questions regarding his readiness to face the world alone.  However, I am reminded that every man must face the world.  Alone.  Autism or not.

While I may lurk in the background, that is all I can probably do--lurk.  I have to let him go.  He may fall, and I won't be able to kiss his cheek, wipe away a tear, and hug him.  I won't be able to reassure him and encourage him spontaneously.  He will have to find his way, make his own decisions, and reap his rewards or consequences.

It may be more of a difficult transition for me than Ryan, but he has become his own man!

Sunday, February 1, 2015

Building More Than a Table

Five boys rough housing over the last twenty some years has taken a toll on the furniture. Consequently, we have ditched quite a bit of it. Replacement has been a great opportunity for the boys to work together.

Cameron is very mechanically minded, and he loves to figure out how to assemble things without looking at the directions.  Sometimes, that can be a disaster.   However,  Cam possesses a great skill because, quite often, the directions lack clarity. This was the case for the coffee table.  Cameron informed me the directions were useless; there were just a bunch of two dimensional pictures that were not well drawn.

Together, Nick and Cameron built the table, but with some complications. Nick managed to strip a screw.  Not a huge deal, but Nick was not thrilled that it was not right.  Cameron guided Nick, and Nick mastered it.  Despite autism, Nick is adapting.

What a win:  Cameron is learning teaching skills and patience, and Nick is learning how to build things.  They are refining communication skills too.

Now, we have a new table, just in time for the Superbowl Game today. I hope this table will survive the three remaining boys and their jousting!

Thursday, January 15, 2015

The Value of Moms Night Out

The smiles of  moms
Last Thursday, my husband brought home a bottle of champagne to celebrate. I was surprised. My facial expression must have revealed my question of what was the mysterious event we were celebrating.  Mike answered, "It's Thursday, so we celebrate Thursday."

I smiled.  Why not?

Until I remembered that Moms Night Out (MNO) was that night.  I hesitated to bring it up to Mike, but I had emailed my RSVP almost a week prior. I had commented to Mike that one of the moms, who had moved out of town, was going to be at MNO. So I reminded Mike that it was MNO.  If he wanted, I'd call and back out.  He replied, "Absolutely not, especially since your friend from out of town will be there.  The bottle will wait til you get home."

So I went, and I am glad I did.  We had a wonderful turnout of about 17 mothers.  We represented many stages of motherhood.  The ages of our children varied; some had young children while others had teenagers, or a mix of both.  Some were pregnant, and one mom brought her five month old baby.

I knew about half of the moms, so I was introduced to the new faces.  Connections were quickly made. We spoke about many subjects.  Some topics were light and whimsical, and others pertinent and compelling. We shared experiences, insights, and prayer.  Multiple conversations occurred simultaneously, making the time slip by unnoticed.

During this time I was able to catch up with a mom whose son tutored my son with autism.  She told me that her son wrote about his tutoring experience with my son for an English class.  I never would have guessed that my son would be included in such an assignment! Anyways, connections like this are made via MNO, and they are important--to build trust and friendships.  These are vital, not just for moms, but for the offspring.  Having a son with autism, I am careful who I bring into his life.  These boys met through the boys club via the home schooling group.  What a great update I received!!

I arrived home, and the bottle of champagne was opened.  My husband greeted me with a glass and a smile.  I summarized the evening quickly, and then the time was ours to celebrate.  I thanked Mike for waiting for me.  He responded that he knew how much I gain from MNO--how important those friendships are to me.  He recognized how much I needed to get out of the house and connect with like-minded women.

I am thankful I have such an understanding husband who appreciates the value of MNO.

Photo credit:  Clare Willis

Sunday, December 28, 2014

Nick Earns an A, After Supposedly Failing

At the start of each school year/semester, I send an email to my sons' teachers, advising them that my sons are on IEPs due to autism.  I highlight how my sons learn.  I also give indicators to observe if my sons understand the lessons and concepts.  Too often, the teachers, especially the teachers of the mainstream classes, do not get any information until the second or third week of the semester that my sons have autism--which is too late.

I received the following email five days into last semester regarding my son's Spanish II class:

Good Morning Mrs. Johnson! 

I wanted to introduce myself.  I am Ms. C. and will be Nicks case manager this year.  Thank you for the detailed information about Nick.  ...he is failing Spanish 2.  Has he mentioned anything to you about this? I am not sure if he even knows.  Ms. S just walked in and was wondering if you would be opposed to changing his grading to Pass/Fail or would you like to find a different elective for him to be placed in?  I am sorry to bombard you with this, however, I am glad we have found it early in the semester where we still have options.

I was mystified.  How can my son be failing before a test had been given or an assignment graded?  The more I thought about this, the more dumbfounded I became.  What did this case manager base this decision on?  My son had As and Bs in his Spanish I class, and that teacher had figured out how to accommodate Nick's autism.  Not only did Nick survive Spanish I, he enjoyed it.

How many autistic kids, who barely communicate in their native tongue, take on and succeed in a foreign language?  Well, my sons have never fit any statistic.  I've raised them to think that they can do whatever they want.  They may have to work harder than others, but they can succeed!

So why is this case manager claiming that my son is failing on the fifth day of the semester?

In short, I've seen it all before.  People underestimate my sons with autism.  My boys do have a disability, but they are not stupid.  They may not be able to communicate as well as others, but they can relay information.  They can tell you what they know, just not necessarily in the format wanted.

If this special ed teacher had taken the time to research Nick, she would have found his transcripts show a student with a 3.5 GPA.  She would have seen he has taken some special ed classes and many mainstreamed classes, including a college math class.  Despite autism, this kid pulls awesome grades, illustrating mastery of concepts.  At the end of the semester, Nick earned an A- in his Spanish II class--a far cry from failing.

Nothing infuriates me more than someone who "thinks" he might know my sons, based on textbook studies of autism.  In this case, a special ed teacher made a judgment regarding my son, Nick.  I sent an email inquiring how she concluded Nick was failing.  I never received a response.

This is what I do most days--ensuring that my kids get what they need to succeed in their dreams.  I don't do the work for my sons, but I make sure that no one stands in their way.

I have spent many hours getting my boys through the school system.  Now they face adulthood, and the work is just beginning--for all of us.

Wednesday, December 10, 2014

Autistic Sons Admire Sunset

Being a mom of special needs kids taxes mental and physical energy.  I can get caught up in tons of paperwork and appointments.  There is always something waiting to be tackled!  Interruptions don't help.  Doorbells, phones, and texts are among the common agitators. Even the kids' yelling, "MOM," can grate on the nerves.  That "Mom" quickly shifts from "Mom?" to "Mom!!"

I cringe.  "Just let me finish this," I yell.

As a result, I can miss some great moments.  This last time, the call of "Mom" was to see a beautiful sunset.  If I had persisted in finishing my task, I would have missed it.  I was amazed at how fast it changed within seconds.  By the time I got the closest camera out, the colors had moved far away within those moments.

This was not an emergency, but it was important.  I am glad my boys demanded my attention, and I came.  We shared a few moments of an awesome, stunning sunset.

This also illustrates that kids with autism can appreciate the beauty of nature.  Many assume that autistic people lack the cognitive ability to appreciate nature or items that are beyond their touch.  That is simply untrue.  Actually, it may be we who are caught up in the paperwork who don't have the cognitive ability to stop and appreciate nature!!

In this case, my autistic sons stopped to admire the sunset.  THEY believed it was important enough to call me.  This just reinforces we don't always know what autistic kids can do!