Two years ago
I posted a short series blog about our family’s journey with autism – Jacob’s
journey being the most prevalent. Today,
April 2, is World Autism Awareness Day, and a great time to write an update. So,
for anyone interested in where we’ve been, and the progress our family has made
this past year, I hope you’ll read the following post!
The funny
thing is progress is often in the eye of the beholder. I
remember watching my dad stand in our upstairs family room of my childhood home
gauging the growth of the oak trees he’d planted in our backyard. Throughout
the years, he would place his toes against the baseboards (his base point) and
look out and see how much the tallest branch had grown since the last time he
stood in that same position. He would relish with pride the height of the
trees. He was thrilled with the progress of their growth. The truth is that the trees had flourished because
he had put forth significant effort to ensure they would. Years later we sold
our house and someone else moved in. The new homeowners reaped the benefits of
beautifully matured trees likely with little concept of the amount of care that
went into planting the saplings. It’s so symbolic of our children, isn’t it? So
much care goes into their beginning. So much pride comes from watching them
flourish and grow, but in the end, it will more than likely be others that will
truly benefit from what they have to offer. It’s THIS legacy that I work hard
to nurture. I want Jacob (and Audrey too) to flourish. I want them to reach
their maximum potential so that they can benefit others.
Today, I have
the luxury of standing in the growth era with my toes on the baseboards
assessing progress and feeling abundant pride regarding the accomplishments Jacob
has had since the last time I stood in this spot. It’s certainly been another year of answered prayers
and many many changes. Here are some
highlights, as well as some parting thoughts:
·
Last
year, Jacob remained in his Communications classroom (what many of us knew to
be “Special Ed”) the majority of the day. He simply wasn’t ready to be integrated
with his typically-developed 3rd grade peers. But 4th
grade has been different! I’m proud to report that now Jacob eats lunch in the
cafeteria and joins his peers during specials (PE, Music, Art, etc.) He’s doing
very well with instruction! He recently
created a basket weave in art class, is learning to play the recorder in music,
and his adaptive PE teacher, Coach Jim, has taught him how to dribble and shoot
the basketball. He’s pretty good
actually! For Christmas, my parents bought Jake his first basketball goal, and
Dave just recently installed it in our backyard J It’s a wonderful distraction from the
IPAD!
·
Also,
since my last update, Jake took private swim lessons at our neighborhood
activity center, and is currently going to gymnastics every Friday
afternoon. He really enjoys these
after-school activities. It’s really a great confidence builder and important
for him to receive instruction for someone other than his teachers, his
therapist or from us.
·
Speaking
of after-school, we have a new therapist too! We miss Olivia who was with us for
all of 2013, but she and I both came to the realization that it was time for
Jacob to have new programs and a new therapist. We are now working with Michelle
who comes to our house twice a week. Michelle
has already taught Jacob how to answer “YES” or “NO” when he’s asked a
question, rather than repeating the question or yelling “NO” if he disagrees. I
can’t even explain how HUGE this is!!
·
Since
my last update, Jacob learned how to sit at the table with us to eat. His diet
has expanded from only a handful of preferred foods to a wide range of new foods!
The Weidner Family proudly welcomes all variations of chicken, pastas, tacos,
pork chops and drumroll please…new kinds of fruits and red meat! He didn’t eat
red meat until last year! I can’t describe how wonderful it is to sit together
as a family every night and only prepare ONE dinner for all of us to enjoy
together as a family.
·
Jacob now tolerates wearing a life jacket, has much better eye contact, tells us what
he wants/needs, vocalizes when he’s hurt, etc.
Although he has to be prompted and encouraged to engage with us, we know
he’s in there – still buried in autism rubble – but he’s in there!!
·
Jacob
will be 10 years old next month. Until last summer, age 10 was a significant
milestone because age 10 was the point in which his in-home therapy would cease
to be covered by insurance. However, that’s no longer the case! Texas Governor
Rick Perry signed a bill last year expanding
autism insurance benefits in Texas by eliminating any age caps for state-regulated
health plans which meant the 10 year old ceiling was lifted. Yay! For our family, this was a big deal. If
that bill hadn’t been passed we’d only have one more month before we’d have to
consider paying out of pocket for the treatments that are helping him greatly,
and it’s not cheap!
·
Along with Jacob’s
neurologist, we have finally settled on the right dose of medication. His doctor also prescribed an appetite
enhancer to stimulate his appetite since he’s underweight (loss of appetite is
side effect of his ADHD medication…ugh)! He hasn’t gained much weight, but it’s
a careful balance to ensure he’s gaining weight while also providing more
nutritious meals.
·
Jacob also helps out with
chores like putting away dishes, hanging up his clothes, picking up toys, etc.
·
He plays more and more
with Audrey, and she’s been a terrific little friend for him. Nothing makes my
heart dance more than when the two of them play chase through the house!
Giggles, squeals, tickles and…happiness. Simply beautiful.
As for Dave
and I:
·
One
of the most important things Dave and I did this past year was retain a second
financial firm to help us establish a life plan for our family. We’ve had the
same financial planner for more than a decade to help us with our financial
investments, but we learned that we really needed to seek counsel from experts who
specialize in life planning for families with special needs to lock in a solid
financial future for our family. We hired a company called “Income By Design” and
had more than half a dozen arduous meetings, many times tearful, to learn the
ins and outs of Texas law and regulations for adults with special needs. In our
first meeting, we found out that an individual cannot have more than $2,000 in assets
at age 18 or they are disqualified from Social Security. At age 9, Jacob
already had $3,900 from savings bonds that were gifted to him. We obviously sold them and re-routed those funds
to his trust. Anyway, after learning all we could we had an attorney update our
last wills and testaments, draft power of attorney documents, establish a
special needs trust fund with the IRS and gave us the step-by-step process for re-routing
all inheritance from Jacob as the direct benefactor to his newly established special
needs trust fund to secure his future. Whew! It was a big task. “Income By Design” has a sign in their
conference room that says, “Noah didn’t wait until it started raining to build
the Ark.” I’m glad we’ve started building because the rain is coming people!
·
Finally,
we have an exciting opportunity to have a front row seat for a significant new ASD
program in Dallas. This September, UT Southwestern and Children’s Medical
Center Dallas will open a Comprehensive Clinical and Research Center in Autism
Spectrum Disorders. This multi-million
dollar program will be located at UT Southwestern’s North Campus, and I’m
thrilled to have been asked to be on its inaugural steering committee for the
Friends of ASD group. The center is dedicated to conducting research and
gaining greater understanding of the cognitive and behavioral problems that
result from autism and other neurodevelopmental disorders. More to come on the
development of this critical program, but I’m blessed that my sweet friend
Traci thought to recommend me to be a part of it! I’m sharpening my pencil. I
can’t wait to see what progress can be made!
Needless to
say, we are moving through 2014 with more anticipation than we’ve ever had. We
can finally eat at restaurants, we can finally get a decent night’s sleep, and
we will embark on our first trip to Disney World next month! Our sweet handsome
baby is making big strides, and with toes on the baseboards basking in the
glory of progress, we couldn’t be more thrilled! I will close with this thought…
When Jacob
was born in 2004 Pluto was considered one of nine planets in the Milky Way.
What I knew to be truth for the greater portion of my life was that Pluto was
the distant-most planet and the farthest member of an exclusive club of nine
planets in our solar system. However,
after scientists spent a decade documenting hundreds of planetoid objects, some
similar in mass and location to Pluto’s, well… things changed. In 2006, scientists from around the globe
agreed to strip Pluto of its planetary status. That’s a big deal right?!
Despite the abolishment, Pluto will always be a part of our planetary status
history, but that’s just it…it is history!
My prayer is that Jacob’s autism will be like Pluto one day. Although
Pluto’s status is forever woven into the fabric of our history, its relevance
has been greatly minimalized. For Jacob, I pray that hundreds of other
memories, situations, accomplishments, successes, talents, experiences, hopes
and dreams will surface as being as significant in Jacob’s life as autism once
was. My hope is that we will one day be able to demote autism from being a
defining characteristic of Jacob’s life to a complete afterthought, a distant
memory, just one of many threads that make up his unique fabric. Wouldn’t that be amazing?
I have faith
in God’s ability to know this prayer. It’s only by way of His supernatural hand
in our daily fight and a faith in His healing power that will make it happen. I
have faith. And so, I pray this prayer to our God who offers an abundance of
underserved favor. I pray, with great anticipation like my hand reaching for
the cloak, that He will release Jacob from autism one day. I boldly ask you to
open your hands and hearts RIGHT NOW and include my sweet Jacob in your prayers
too.
We love you
for walking this journey with us. I do it for my best boy, and I do it in His
name.
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.
Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
Amy
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