Post #4: The Rally

Post #4 means that we are more than halfway through the series! The previous posts collectively detailed our entrance into the autism wilderness and several of the stages of grief that came along with it; denial, bargaining and depression. Last week’s post, in particular, celebrated the power of friendships and the myriad of people that prayed over us and helped us back on our feet.[1] 

This post, however, marks a major turning point in our journey. I’m so excited to share with you how our immediate family members (aka the real “Team Jacob”) provided the resources and inspiration for us to stage an “about-face” to make things better for our sweet little boy, and for our family as a whole. 

We Dusted Ourselves Off

As I have stated before, autism was/is/will be ominous and frightening. We spent the initial days of our journey flailing in a total spin out. We couldn’t see the forest for the trees. Even though we were weary and angry from having to succumb to autism, we eventually realized that we would do anything and everything that was humanly possible to make the infrastructure the best it could be. With many opportunities ahead, we regained focus, positioned Jacob as our constant priority, and seized ownership of our destiny. That may sound a little cheesy, but this realization was truly the turning point for us.  Maybe we couldn’t change autism, but we could pull out all the stops on everything else.  So, with the help of “Team Jacob” we collectively agreed to eat the elephant one bite at a time.  BIG changes for Jacob and our family were on the horizon.

Romans 12:2
Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is - his good, pleasing and perfect will.

They Said What?

One night while my parents were in town visiting, we went out to eat.  I lovingly refer to it as an “intervention,” but it was merely a serious discussion.  Unbeknownst to me, they had been discussing ways in which they might be able to help us.  One of their ideas was that perhaps Dave and I might consider having one full-time parent at home. Given that Jacob's ABA therapy was $50,000 a year (yes, that's out of pocket!), and with another baby on the way, we didn't see how that would be possible. 

And, before I go on…let me take a quick time-out to describe my parents. My mom is loyal and humble; unyielding in her love for her family. She is a planner. For me, her mere presence in the room is comforting. She is a calming and a genuine voice of hope and support...always. My dad is the strategist, and an executive by nature.  He was Valedictorian of his High School, stood on the podium to ring the bell at the NYSE on Wall Street (twice), has taught leadership courses and delivered commencement speeches at the collegiate level, and has completed the Advanced Management Program at Harvard.  He is wicked smart.

So when they offered to help us come up with a game plan, I knew we should seriously consider it.  Besides that, how wonderful would it be for Jacob to have a full-time parent?!  So, that’s exactly what we did.  We came to the conclusion that one parent needed to be devoted to the full-time management of Jacob’s therapies, doctor’s appointments, diets and supplements, activities, and autism research especially if we had some financial support to make it happen.

The Sea Change

Two main factors came into play in deciding which one of us would stay home.  First, I was within weeks of a promotion and a nice pay increase.  The promotion was also going to be a great step in my career.  Second, Dave is methodical and patient by nature – both of which were needed to parent a child with autism. So, in December 2007, Dave quit his job to be a full-time stay at home Dad. Pulling out all the stops included some other big initiatives and changes:

·        Dave no longer had his company truck, so we sold our SUV and purchased two used cars.

·        We met with our financial planner and put our annual Roth IRA contributions on hold…indefinitely.

·        We turned our front living room into a play/therapy room. We no longer cared if it had nice furniture and stayed picked up.  Everything was about keeping Jacob happy and meeting all of his needs.

·        We sought traditional medical care for Jacob.  He had an EEG, EKG, MRI and blood work done to ensure the autistic traits weren’t caused by something else. 

·        We avoided medication for as long as possible. Instead, we sought alternative medicine from non-traditional doctors who used bio-medical treatments.

·        We had supplements sent to us from Alabama, and then had them compounded at a local pharmacy. Also, I learned how to administer shots.  We gave Jacob his supplements and B-12 shots each morning.

·        After a series of blood work detected minor allergies to wheat and dairy, it was recommended that we put Jacob on a Gluten/Casein Free diet. We met with a nutritionist and started the diet. GF/CF diet means no wheat and no dairy, which in my opinion, means no food. He was only on the diet for a few months.

·        We put Jacob into speech therapy, occupational therapy, feeding therapy, equestrian therapy and most importantly, Applied Behavioral Analysis (ABA) therapy.  Dave and I took ABA training courses to ensure we used the strategies at home when Jacob wasn’t in school.

·        Dave’s Dad drove up from the Texas coast to help us finish several of the home improvement projects that had been thrown to the wayside.  He’s a masterful carpenter, so it was very nice to have his help!  Additionally, with very little time remaining in the day, Dave’s mom would read articles about new therapies and legislation and send them our way.  And, just like our friends, both of our parents took the kids every few months to help relieve a little bit of our stress. There’s no way to appropriately thank them for their generosity.

If there was the slightest hope lurking around the corner, we sprinted toward it. Some of the things we tried were successful, but sometimes our efforts resulted in dead ends. We pressed on any way.

The Head Fake

Dr. Randy Pausch who delivered his famous The Last Lecture at Carnegie Melon University (which went on to become a national best seller) said, “The best way to teach somebody something is to have them think they're learning something else. We actually don’t want our kids to learn football. … we send our kids out to learn much more important things. Teamwork, sportsmanship, perseverance, et cetera, et cetera.” 

That’s exactly right.  I thought we were fighting autism all this time.  What God was doing was building our muscles so that we can handle all that he has in store for us. This journey has taught me so much.  I can’t wait to share more…

Photo Gallery

Our sweet Jake-Jake. I'd do ANYTHING for him.

 

I've kept a journal for the last 5 years of every significant doctor's appointment, therapy we participated in, test and evaluation.  To date, the document is nearly 6 pages long...

Sweet Jacob playing on his IPAD and waiting patiently in yet another exam room.

Our playroom. The slide gets the most use :)

Proverbs 3:5-6

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

[1] Dear Friends, THANK YOU from the bottom of our hearts for your texts, e-mails, FB comments, etc.  We are honored by your friendship and support, and if Jacob could say it…he would say “thank you” too! 

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