Autism: Surviving and Thriving

Eleven 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 22 yr, moved out of the house.

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 had sent a silly text to him in the morning about how I hoped he could get off work early, and bring home a bottle of champagne.  I did not receive a reply to the text, so I forgot about it.

Mike did not get off early, but I was surprised he brought home a bottle of champagne. 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 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!

Thursday, December 4, 2014

Nice Shootin' Tex

Cameron texted on Saturday that he wants "to be shooting at marksmanship more" because he beat the marksmanship captains and broke the pistol record.  He surprised me that he had beaten more experienced shooters.  He later told me that the funny thing was, for the M4 sim, he was shooting lefty so he could see.  He did "surprisingly good".

Cameron is right handed, so that is why I was also surprised at his results. I wonder how well he would have done if he had shot with his right hand, wearing his glasses.  He replied that his glasses probably have a lot of dust on them.  I wonder if he even knows where those glasses are. Maybe this will be an incentive for him to wear his glasses!

His final update read, "My M9 high score, which is THE high score, was 189, and the M4 high score was 69."

"Wow," was my reply, even though I don't know what an M9 or an M4 are.  I assume a rifle and pistol.  Here, I am worried about my son getting the proper education to use the firearms.  The irony is I also need to get educated as to what he's shooting!

Saturday, November 22, 2014

Cameron vs Camp Pendelton

Looking down the barrel of the gun
Cameron left yesterday with his JROTC class for four days at Camp Pendelton in Southern California.  I read out loud to Mike everything that we are signing away on the release form, and Cameron was loving it: (injury from but not limited to) flying projectiles, explosions, flying and motor vehicles, live munitions...  The list goes on.

Activities involving massive weaponry would make any mom worry.  Not me so much. Instead, I worry about the military base surviving Cameron.  I think we should have had the administration on the base sign a waiver releasing us from lawsuits as they are bringing Cameron onto their field...

My dad introduced Cameron to real firearms when Cameron was quite young.  We wanted to ensure that Cameron, as well as all our boys--even with autism, knew how to use and respect guns. Consequently, my dad has taken the boys to a shooting range. Since then, Cameron has been working on marksmanship randomly, and he loves it.  He has decorated his room with the paper from his target practices.

I am not sure where Cameron's interest grew.  Perhaps, video games and movies have inspired and enticed him.  He has joined the marksmanship club at school, so he continues to learn about the weaponry as he practices.

Cameron has found a hobby he likes, and he is quite good at it. Through the JROTC, he should learn the self discipline necessary to handle the dangers presented.  Of course, they don't use live ammunition on campus, but guns still demand to be treated with care and maturity.  Cameron can be quite "spirited and enthusiastic" when given an opportunity to be unleashed!

Cameron is thriving on it all!

Here's a link to Cam at target practice:

Wednesday, November 19, 2014


My sister-in-law wrote, "Never under estimate the power of a hug. This simple gesture is not really simple at all. Its complexity in action and response makes it one of the strongest forces in the world, making it heal almost anything!"

A hug is how we found out about deep pressure, which helps relieve sensory meltdowns when my boys were young.  It was one of those days when I was hanging onto sanity by a thread.  Ryan couldn't talk at that time.  He wanted something and was going into a ballistic tantrum.  I couldn't figure out what he wanted.

At the same time, Nick was hungry and needed to be fed.  Both kids chimed out, "MAMA!"

I gave Nick a quick snack, so I could focus on Ryan.

I was in tears, trying to figure out what Ryan wanted.  I couldn't solve the mystery.  I ended up just hugging him really tight. At first, Ryan resisted.  He didn't like to be touched, let alone hugged.  There were dents in the wall from Ryan leaning backwards to get away from people who wanted to hug him.

Within a few moments, we both calmed down.  Then he hugged me.  He was about four years old.  I received my first hug from Ryan.

Later I mentioned this to Ryan's adaptive PE teacher.  She said they have weighted vests to help keep the kiddos calm.  The physical therapist also said that deep pressure helps.  She showed me how to apply it, and it worked every time.

Sunday, November 16, 2014

Picture This: Growing Up with Autism

This last week, when I couldn't sleep, I sorted the boys' school pictures.  I laid them out side-by-side.  I was treated to smiling faces and seeing my sons grow into young men.

Except for when Ryan and Nick were four year old.  In those pictures, Ryan and Nick don't smile.  They look stoic, blank, and empty, as if they were in pain.  I was surprised to see how the autism symptoms manifested themselves.  Although we noticed loss of communication when Ryan and Nick were two years old, they were totally emerged into their individual worlds by the age of four.  They loved being left alone doing their own rituals or form of play.  (There is a slight pause at these photos of Ryan and Nick at age four.)

Then the pictures reveal how the boys slowly emerged, relating to the world around them.  Cameron took the video of the pictures, as evident at the end via his somewhat humorous self-identification.