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 :)