Inchworm

“The invariable mark of wisdom is to see the miraculous in the common.”

-Ralph Waldo Emerson

After the excitement of the holidays and before the two-week-long birthday celebration of both of our boys (Crazy? Yes. Fun? Absolutely!), our intrepid explorer Joel embarked on a new journey at the beginning of January.  We are thrilled that he was able to start group therapy through the Perlman Center at Cincinnati Children’s Hospital so quickly after we began investigating the program.  He, along with two other awesome boys about his age, has “school” two mornings a week for approximately two and a half hours.  We (parents stay with the kiddos at this level) work with a team of three fabulous therapists (Physical, Occupational, and Speech/Language) to build skills and expand abilities.  It is holistic, multidisciplinary, play-based, and a ridiculous amount of fun!  Our Joel is a social butterfly (all part of his plan to love everyone on earth); he adores seeing his buddies and checking out their activities too.

A big piece of the program is assessing what sort of equipment and technology best fits each child.  Joel has tried out a stander with wheels (he’s quite a fan), a few different chairs/seats, and lots of recordable switches for communication.  They have also experimented with kinesio tape and vests to support his abdomen and are working with gestures and sign language in addition to vocal sounds.

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It can be difficult for others (and sometimes even us) to notice the subtle progress Joel is making as he frequently gets a bit overwhelmed in groups or new places.  Because each one represents tons of progress, I’m listing each of Joel’s newest accomplishments individually:

-picking up, taking a bite, chewing, and swallowing bread, crackers, pizza crust, etc.

-army crawling, inchworm style, farther and faster (with a determined look in his eye!)

-sitting independently for longer periods of time, stronger and more vertical

-pushing a ball back and forth with friends or brother

-signing “more”

-nodding head “yes”

-pushing down with feet

-reaching for what he wants

-complaining loudly, like a two year old!

-saying “hi”/”hey”

-pushing big wheels (i.e. on a stander) himself

-responding more quickly to questions and requests

Of course we are impressed with Joel, but the best part is seeing him amaze himself!  He is smart, strong, happy, and healthy.  His EKG and echocardiogram showed normal results, and his only meds are vitamins.  (Knock on wood that this trend continues!)

We will be meeting with genetics doctor later this month to discuss further investigation to the potential cause of Joel’s unique brain formation.  We are not sure how much time/energy/money we will spend to figure it out, though.  To us, Joel is exactly who he is supposed to be, funky brain and all.

This mama has come a long way in a year.  On Joel’s first birthday I cried when I woke up because I knew something was “wrong” and I was scared and sad.  I focused on all the milestones he wasn’t hitting and how far behind I thought he was.  But there is absolutely nothing sad about Joel, and this year we partied!DSC_0126 DSC_0083 DSC_0085 DSC_0025 DSC_0020

Thanks for joining us in celebrating Joel!!!

For those of you who may be interested, these authors, Amy Julia Becker and Glennon Melton, continually help shape my attitude about life, perceived disability, and faith:

http://www.patheos.com/blogs/thinplaces/2013/02/telling-penny-about-when-she-was-born-and-an-interview-with-family-life/

http://momastery.com/blog/2013/02/13/begin-again/

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5 thoughts on “Inchworm

  1. I am so happy that so much wonderful progress being made! I minis you terribly but I am so grateful that I can keep up via the Internet! xoxo

  2. You are amazing! I feel as though I’m going back in time and doing it all over again with Allison while reading this. I’m so proud of Joel! You and your husband are great parents for giving Joel all the opportunities to grow and learn. I’m always here for support or a listening ear. Keep up the good work!!

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