Post #7: Final Thoughts for Jacob

World Autism Awareness Day – “Light it Up Blue”

Today, April 2, 2012, marks the fifth annual World Autism Awareness Day[1]. Every year, autism organizations around the world celebrate by doing unique fundraisers and special events to raise awareness about autism.  It’s no coincidence that the day of my final post was planned for this day – the most significant day for autism awareness.  Tonight, I’m proud that many iconic landmarks around the globe will “Light it Up Blue” to show their support of a cause so near and dear to my heart and to millions of others too.  These are just a few of the structures participating in “Light it Up Blue” tonight (for a comprehensive photo gallery, please visit www.LightItUpBlue.org). 

Christ the Redeemer - Rio de Janeiro, Brazil

Sydney Opera House - Sydney, Australia

Empire State Building - New York, NY

My Jacob Baby

“To the world you may be but one, but to one you might be the world.” Unknown. 

I’ve spent the last 6 weeks of this blog describing our situation, members of our family, our friends, and the array of emotions that we have experienced on our journey.  However, at the center of it all is one incredible kid. Jacob is smart, sweet, gentle, funny, and an all-around amazing little boy. He is a boy worth fighting for, a boy worth celebrating, and a boy who deserves an infinite amount of love. He is definitely easy to love! Jacob is not a boy defined by autism, but trapped deep inside it.  We’ve utilized our energy and resources to chip away at the autism that imprisons him, and we will continue to work hard at making progress.  We will also pray that a cure will blow the doors right off, and for the first time, Jacob will no longer be stifled and we will be able to embrace all aspects of our son. Until then…we will charge on.  We’ve definitely come a long way in our journey, but it’s certainly not over.  Please continue to pray for Jacob, our family, and the researchers to pinpoint a cause and a cure for autism.

I’ve written a letter to Jacob, and wanted to share it with you today.  Every parent, grandparent, aunt, uncle, cousin, friend and neighbor who loves a child unconditionally will surely relate.

A Letter to My Son

Dear Jacob baby,

Mommy loves you so much!  I am typing these words with a smile on my face because you bring me such tremendous joy, and I am so very proud of you!

I write this letter to you knowing that you don’t know what these words mean. I pray that one day you will, and I type it in faith for when that glorious time comes. Until then, I can assure you that you don’t need to comprehend the words themselves; you only need to feel the depth and breadth of Mommy’s unconditional love for you. I vow to work hard each and every day to ensure that you are safe, happy, healthy, supported, educated, loved, comforted and cared for to achieve your greatest potential.

I know you’ve seen Mommy write in her journal all of these years.  So, before I started writing this blog, I skimmed through my journals to see what I may have said along the way, and I came across this prayer. 

Sunday, November 2, 2008

Dear God,

Please be with Jacob.  Please watch over him.  Please help us find a doctor or doctors that will provide answers to the many many questions we have about what’s happening in his little body.  Please continue to bless him with happiness.  Please continue to give Dave and I the strength to navigate this dark road.  It is my faith in you that gets me through.  I love you and thank you for the many blessings you have given us.  Amen.

Mommy can tell you that there are many others praying a similar prayer for you, and even though I prayed for these things several years ago, the request has not changed.  You are so very loved, Jacob.

And like I said before, the words don’t make sense now, but the actions, and the feelings and the happiness is how you’ll know in your heart that Mommy loves you.  Here are just a few examples:

·        When I put vanilla icing on graham crackers because it’s your favorite snack. That is me loving you.

·        Every single morning on our way to school when I slip my arm into the backseat and take hold of your soft little hand and hold it tight.  That’s me loving you. 

·        When I drop you off at school and insist that I kiss you before you bounce up the stairs and disappear for the day, that’s it too. 

·        When we burst with laughter after I tickle you like crazy after chasing you through the house.  That’s me loving you.

·        As you stand at the center of the bridge down by the park and I hand you several sticks that I’ve gathered along the way knowing that you want to throw them over the edge and watch the water splash….that’s me loving you.

·        When I stand on the side of the tub and yell “Waterfall!!” before dumping a cup full of water on your giggly self, that’s me loving you.

·        At nighttime when I lay next to Audrey and we hold hands with our eyes shut praying for you.  That’s it again.

·        And, believe it or not when I enroll you into a school, sign you up for therapy, or take you to see a new doctor (again), that’s me loving you.  It’s actually me loving the future I know you deserve to have.

You will know it in the strength of my grip when I sense you are confused, scared or overwhelmed.  You will know it in the tone of my concern.  You will see it dance across my face when we play.  You will sense it in my actions. And again, and again, and again, all day long and into eternity it will never ever stop.

I honestly don’t know if you’ll ever have freedom from autism here on Earth, but I know that you will have complete freedom in Heaven. Thank you for contributing, to me, the greatest gift any human being can provide by leading me back into the arms of Jesus.  I can’t wait to walk hand in hand with you and just….talk. 

I am grateful for you. I am proud of you.  I love you so much my sweet Jacob.

Mommy

1 Thessalonians 5:16-18

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

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[1] Source: Autism Speaks - Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders, caused by a combination of genes and environmental influences.  These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 88 children in the U.S. is on the autism spectrum – a 1000 percent increase in the past 40 years that is only partly explained by improved diagnosis.

Post #6: The Future: Fears, Hope, and Faith

I hope the first five posts have adequately told the story of our past and how we managed to make it through most of the autism wilderness.  I hope it’s been a little enlightening and not a total waste of time?!  For now…I think people are interested in knowing about our current situation, as well as worries and fears, our hope and our faith. So, here we go...


No Time Like the Present

It’s a typical Monday night for us.  I’m literally sitting next to Audrey and across from Jacob at the kitchen table. It’s dinnertime. Dave has rigged two chairs against the end of the table on the far wall, and wedged himself between our wine cabinet and the other end trapping Jacob along the side so that he’ll eat his dinner. By the way, the wine cabinet is merely furniture. It serves no purpose in storing wine.  A bottle of wine in this house doesn’t stand a chance of ever being on display.

Anyway, Jacob is having chicken nuggets tonight. He’s frustrated right now. He stands over his plate and yells out, “What’s wrong Buddy?!” followed by...“What’s the matter with ya?!”  He’s unable to communicate that he’s frustrated, or the specific reason why, so he repeats the verbal responses that Dave and I most often say when we see that he’s upset. This type of repetitive expression is called echolalia, and it’s very common in children with autism. Maybe he isn’t hungry tonight?  Maybe his tummy hurts?  Maybe he’s sick of nuggets?  Who knows what’s bugging him?  Despite the outbursts, Dave does a great job of getting Jacob to eat.  It’s a small victory indeed. In all honesty, I’m grateful that Dave is in charge of Jacob’s dinner tonight.  I’m still tired from the 3:45 am wake-up/stay-up from a couple of nights ago.  By the way, if there’s ever a need to write a thesis on Lady and the Tramp, Monsters, Inc., Cars, Bug’s Life, or Finding Nemo, I’m your girl! I’ve seen those movies hundreds (I’m serious), hundreds of times in the wee hours of the morning.

I received a call from our local school district today.  The results from 45 days of detailed evaluations conducted by the district’s autism team are now ready to be presented to us.  We’ll find out next Thursday what services and support the public school system is able to provide.  We’ve had Jacob in a private school for the last 3 years, but after some research, we felt as though the public school system has finally advanced to match, or in some cases exceed, the services he’s currently receiving at private school.  I’m eager to hear what they will report.  Please say an extra prayer that we find the right “school home” for our little man.

We started a slightly different dose of Jacob’s ADHD medicine this morning. Also, I finalized the party plans to celebrate Jacob’s 8^th birthday. And unbeknownst to me, as I sat in our guest bedroom locked away writing this post, Jacob went to the backyard, picked up some sidewalk chalk and spelled the words “cake” and “dog” on the patio. He drew a picture of a cake with crazy candles too! What an awesome exclamation mark on our somewhat average day!  In my heart I know that tomorrow will probably be similar.  Still…I can’t help but worry. 


Worries and Fears

Do you want to know what I worry about?  I worry that my son and I will never have a deep or meaningful conversation.  I worry that he’ll get lost in a large crowd and I won’t ever see him again.  I worry that the expenses of autism will continue to snowball.  I worry that 1 in 110 kids diagnosed with autism will soon become 1 in 109, then 1 in 108, etc. etc.  I worry that Jacob might regress when he goes through puberty. I worry that researchers won’t find a cure for autism.  I worry that 80% of marriages with autistic children end in divorce.  I worry that Jacob will be bullied.  I take that back.  I worry about WHEN and HOW Jacob will be bullied. I worry that Jacob may become depressed since that’s what his doctor forecasts will happen down the road. I worry that I may not prepare Audrey enough.  I worry about dying – not because I’m afraid, but because I can’t fathom Jacob and I living on this Earth without one another.   I worry…and I worry…and I worry.  I’m embarrassed that I worry.  If my faith was what I know it SHOULD be, I wouldn’t worry at all.  I would know that God has us cradled in his arms, that He will keep us safe, and that greater things are yet to come. 

Luke 12: 22-26

Jesus said, “…do not worry about your life, what you will eat; or about your body, what you will wear. For life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?

Although we have systematically endured all the scientifically-documented stages of grief in our journey, I am getting really tired of worrying. Having been on this journey, my world has undeniably expanded.  Part of that includes the ability to start focusing on the good once more.  I look in the mirror and see hopes, dreams, and most importantly, my faith. Faith which has been restored once again.

Isaiah 30:18

Yet the LORD longs to be gracious to you; therefore he will rise up to show you compassion. For the LORD is a God of justice. Blessed are all who wait for him!

Hope and Faith

I have faith that the future will be brighter for Jacob...for all of us actually. And in an attempt to break free from my exhaustive illustrations about the wilderness (who's tired of it yet?!)…I want to give you concrete stories to demonstrate my hope and faith.  This is my attempt in making it a little more tangible.

Do you want to know something?  We banked the blood from Audrey’s umbilical cord.  Listen, I’m no idiot.  I know that that every pregnant mommy gets the cord blood banking brochure to read, and many slough it off as a marketing ploy.  And it is!  It’s a marketing ploy to an extent; however, in our case specifically, we had a child with a known neurological disorder, and an unborn child who we hoped would NOT have the same issues. So….what if?  What IF the stem cells from Audrey’s umbilical cord could help Jacob someday?  Sibling matches are 75%, and an astonishing amount of progress is being made with (non-controversial/non-embryonic) stem cell research. What if a ground-breaking discovery should occur and we hadn’t saved the pure untainted blood from Audrey’s cord?  What if?  I laid there pregnant with Audrey and couldn’t bear the thought. We had to do it.  We banked that cord blood.  I pray over those stem cells. I pray that researchers will find something one day. I pray, and pray, and pray for a cure.

Do you want to know something else? This is random, but I love Kroger Grocery Stores.  I love them for not just being the “right store for the right price.”  I love them because they have made it part of their company culture to employ people of different abilities.  Last month, the unemployment rate in the US was 8.3%.  The unemployment rate of people with disabilities remains over 70%.  Wrap your head around that one for a second, and journey with me as we think about Jacob 15 years from now.

What does his life look like WITHOUT companies like Kroger?  What will Jacob do with his life every day as an adult with different abilities?  How will he garner acceptance?  How will he feel good about himself?  How will he know what he can do to contribute?  Please make no mistake about what I’m saying. Those things are NOT dreams. Those things are NECESSITIES if you are a human being.  Kroger treats people with compassion.  THAT is why I love Kroger. It may sound crazy, but I almost get giddy as I watch my groceries go down the belt into the arms of a bagger/sacker that is working as hard as he/she is able. I wait until the perfect moment to say, “Hi there!  How are you? Thank you so much for helping me with all of that!” I have no idea if it made their day or not, but I know one thing for sure. My almost 4 year-old daughter won’t embody compassion unless she witnesses it.  She won’t. Period. Life is so beautiful!  Thank you, Kroger!  The program you have in place right now gives me so much hope for tomorrow.  It really, really does.   For more information about the Kroger’s partnership with The Tommy Nobis Center, please visit:  http://www.fmi.org/docs/humanresources/tommy_nobis_center_program_summary.pdf

Philippians 4:6-7

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

The dark moments, the scariness, and the despair led me to come out a better person. I have a more grateful heart. God took his seat in the throne of my heart and chipped away a lot of hurt and selfishness.  He had to break me down in order to build me up greater than before.  Now, I see WHY I was under construction.  I will never be the person I was before.  My love for Jesus and our Heavenly Father is brilliant.  My hope is that this light is evident in all that I do moving forward from here on out.  I will be forever grateful for my blessings which are far too numerous to count. 

Final Thoughts

Next week will be the final post in this series, but it will be very different from these last 6 posts.  I hope you will come back next Monday to see it!  That said, I will close with a few final thoughts.

If you’re anything like me, you’re probably a little interested in knowing what the “application” in all of this might be.  I have an incessant need to understand what I can/should do with information moving forward, so thank you for allowing me to be bold enough to list some ideas:

1)      Watch the HBO movie, Temple Grandin, starring Claire Danes.  She won an Emmy and Golden Globe for best actress for her performance. The performance itself has nothing on the profound life of Temple, a girl with high-functioning autism who overcame obstacles to earn a Ph.D. and to become the voice of hope for everyone with autism. It’s a truly inspiring movie.  Please watch it!

2)      Educate our children.  Every child will interact with a peer with autism at some point.  There are several great books out there, including:

                                                    i.     Autism Acceptance Book

                                                   ii.     Joey and Sam

                                                  iii.     Understanding Sam

3)      Offer respite to a family living with autism.  It will mean more to them than you will ever know.

4)     If you don’t have a church home, I have included the link to my church.  You can download one of the podcasts, or watch the services live on-line. www.valleycreek.org

To everyone out there, thank you for reading.  I hope the goals of this blog series were achieved in some form or fashion, and I’ve been incredibly moved by the feedback.  It has been a prolific exercise for me, and needless to say, it was incredibly therapeutic too. Every family certainly has a unique story, and I am grateful that you allowed me to share a little bit of ours. 

Next Monday will be the final post!

Much love,

Amy

Photo Gallery

Looking back at it, the wilderness is actually a beautiful sight.


 

Watch this movie.  Inspirational!

Jacob wrote "dog" and "CAKE" with a picture of a cake :)

Post #5: Raising a Neuro-typical Sibling

A Baby

In the summer of 2007, the infamous summer when the neurologist said Jacob had “autistic-like traits,” Dave and I learned that we were expecting...“expecting” a life-changing diagnosis for Jacob, and also “expecting” a new addition to our family. We were in the throes of having Jacob evaluated for autism, and trying to wrap our heads around having another baby all at the same time. While some might think news of another baby might have completely overwhelmed us, it was actually quite the opposite. In the dark and scary autism wilderness, being pregnant gave us a wonderful distraction, and much-needed peace and comfort.  It was truly divine timing to be blessed by another baby. Given that over 75% of children diagnosed with autism are boys, I would be lying if I said I wasn’t a little relieved when we learned that we were having a baby girl.  Having a girl meant a far greater chance that she would be neuro-typical, and she was! So, in the Spring of 2008 our Audrey arrived; healthy, sweet, and to us…absolutely perfect.

We spent the first two years of Audrey’s life providing for her basic needs: food, clothing, shelter, warmth and love.  Age two expanded to exploration, discovery and routine. Age three was a period of significant growth, as Audrey’s personality really developed, and she was learning so much every single day.  She will be four years old next month (I can’t believe it!)

Educating Audrey

Dave and I made the decision quickly that we didn’t want to have a “significant talk” with Audrey one day out of the blue about autism. We also didn’t want her to be confused or scared by Jacob's outbursts and tantrums. We wanted her to know about autism up front.  First, it was just introducing the word “autism” to her vocabulary, and slowly adjusting a more robust explanation of what it entails to her intellectual capacity. Since she’s only three years old, it’s still very very basic information!  This was a conversation she initiated with me a few weeks ago:

 “Mommy?” Audrey began.

“Yes baby” I responded.

“Jacob has autism and needs lots of help,” she stated matter-of-factly.

Nodding and smiling in agreement I murmured, “Mmm-hum”

“So, I will help him” she proclaimed.  “You. Me. Daddy.  We’ll all help him to eat his food and to talk since he doesn’t talk very good.”

 “Honey, that’s right.” I said. “It’s very sweet to be looking out for him.  Jacob’s VERY lucky to have you… to have all of us, actually.”

“I know Mommy!” she exclaimed.

I try not to say the word “autism” more than I have to because I don’t want autism to define Jacob.  If there’s a hurdle he’s experiencing, I will say the word to Audrey so that she understands the root of the situation or issue, but I don’t say it for the sake of it. I also try to follow the explanation by asking if she understands what we’re talking about. I do this for two reasons.  First, I hope she’ll eventually learn to say, “What? I don’t get what you’re telling me at all!” Second, I use it as a compass for my own benefit to see if my explanation is on target with her maturity level. My hope is that by the time she is an adolescent she will have a complete understanding of it all.  However, I’m laughing as I type this because we are still far from that point.  She asked me this morning if Jacob was on Santa’s naughty list because he wasn’t listening!

Stress and Responsibility

I’m keenly aware that Audrey will take on additional stresses and responsibilities.  Some stress factors might be:

·        Embarrassment around peers

·        Frustration over not being able to engage or get a response from Jacob

·        Being the target of his aggressive outbursts

·        Trying to make up for any deficits Jacob may have

·        Concern regarding the stress and grief Dave and I may have that will be transparent to her

·        Concern over what her role will be in future caregiving

The only things that Dave and I can do are to pray, position ourselves as the filters, and try to defuse and minimize the issues before they get to her.  Raising Audrey to be a mighty woman of God is likely the only sure way she will be equipped to cope gracefully.

Billy Graham once said, “A child needs both to be hugged and unhugged.  The hug lets her know she is valuable.  The unhug lets her know that she is viable.  If you’re always shoving your child away, they will cling to you for love.  If you’re always holding them closer, they will cling to you for fear.”

Forming the Bond

Siblings naturally want to interact with each other, and Audrey is no different.  However, autism often prohibits Jacob from utilizing age-appropriate communication and social skills, as well as coping skills. Despite this, I’ve been really impressed by Audrey’s compassion for Jacob.  She takes Jacob's vitamin to him each morning, goes to the pantry to get a cup and fill it with water from the fridge if she thinks he’s thirsty, and runs to his room to get his Crocs if she notices we are ready to head out the door. She’s a tremendous helper. They sometimes argue over toys, and if Jacob gets too upset, Audrey will give in.  She hates seeing Jacob sad. This morning she started crying after we dropped Jacob off at school.  She told me she was sad because he didn’t kiss her goodbye.  She has tremendous love for her brother. 

Even at her young age, she handles herself very well when Jacob ignores her, and she knows what types of things may trigger him to have an outburst.  I don’t like speaking for Dave since this blog is voiced from my perspective, but I think what saddens him the most is when we have to ask Audrey to quit singing.  For whatever reason, when she sings or hums, Jacob goes crazy.  He yells out relentlessly until we eventually have to ask Audrey to stop.  Can you imagine telling a three year old not to sing? It’s heartbreaking.  Other issues come with discipline.  We have two very different systems for disciplining them. Jacob is rewarded for standing within the vicinity of the kitchen table to eat, while Audrey is reprimanded for getting out of her chair.  We have to remind ourselves to consistently reiterate to Audrey what we expect of her and the unique challenges that Jacob faces.  This parenting gig is really hard sometimes.

Special Times for Audrey

Our goal for both of our kids each and every day is simple – to reach their maximum potential.  A lot is expected of Audrey, not because of our family’s situation, but because she is kind, smart, compassionate, curious, creative, and so many other wonderful things.  This past year I have learned how crucial it is for Audrey to have her own activities, opportunities for success and creative outlets of her own.  We initially placed Audrey into a twice weekly Mother’s Day Out program last year to expose her to other children her age. I struggle with whether she would benefit from attending additional days, but it’s the other three days in the week, the “Audrey days,” that I’m not ready to give up yet.

“Audrey days” are the days when she can sing as loud as she wants to in the house. It means we can bake cookies that no one else may want to eat, or get books at the library that no one else may want to read.  It means abandoning our chores every once in a while to try new playgrounds, go shopping, or make a homemade birthday card for a family member.   She’ll say, “swing me high in the yellow swing please!” which means that we can do it for as long as either of us wants to without interruption. They are the days where she throws on her swimsuit cover-up, tutu and pink cowboy boots and proclaims, “this makes me feel beautiful!” 

Our time together is priceless, and on “Audrey days” she has me all to herself, and to a three (almost four) year old, that’s priceless. There’s no doubt in her mind that she’s loved abundantly. No doubt.

Additionally I’ve come to realize (only recently actually) just how rewarding decision-making is to a three year old.  This sweet child of mine can’t stop talking about her upcoming birthday!  Several times a day she asks if it’s her birthday tomorrow.  So, this morning, I asked her if she wanted to do a little project.  She helped me get out the scissors, stapler and some paper.  I let her decide which colors of paper she wanted.  We sat on the couch together, and made a paper chain birthday countdown. Having the authority to assist, and then seeing the result on her bedroom wall, brought tremendous value to her J

Proverbs 22:6

Start children off on the way they should go, and even when they are old they will not turn from it.

Family Activities

Doing things with just Audrey is important, just as having “Jacob days” is important too. We have eventually learned that there’s fun things we can do together as a family…even with the age gap…even with autism…even without being able to go out to eat or go to a movie theater. Actually, our last 48 hours are a representation of that!  We painted in the backyard, went to church, went on a walk, baked bunny-shaped cookies, watched movies at home, ran errands together, etc.  We are treasuring our time together.

The joy my children bring, and everything they are, led me to the final stage of grief…acceptance. I have accepted autism as part of our lives, and can even appreciate the suffering of the wilderness. I thought I was patient, understanding, mindful, compassionate and faithful before autism, but I was wrong. I’m so grateful that God has had me under construction these last few years.

Romans 5:3-5

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Photo Gallery

"This makes me feel beautiful!"

A great helper

Eating Krispie Kreme donuts on a "Jacob Day" with Mommy

Making cookies with Mommy...we love "Audrey Days"



Painting yesterday



Impromptu balloon release yesterday

Our craft this morning: Birthday Countdown Paper Chain

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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