Wednesday, April 1, 2015



Somehow I feel like I got initiated into the real world of autism over the last month.  Since his diagnosis we have journeyed through Jacob not meeting milestones, insurance problems, lack of speech, medical issues, therapy, hand flapping, eye stimming, etc. But I feel like all of that was nothing compared to the past month. To say its been hard is simply an understatement.  I am writing this because today is the beginning of autism awareness month. I know many of you have seen lots of the positive updates on Jacob's progress with speech and meeting targets in therapy. For the most part I like to focus on that, because what is the use of focusing on deficits?  However, tomorrow (April 2nd) is World Wide Autism Awareness Day.  Buildings and businesses like the Empire State Building, Tokyo Tower, China's Oriental Pearl Tower, One World Trade Center, Panera Bread, Home Depot and so forth will be "lighting it up blue" to help spread awareness for autism.  You've probably seen the special blue light bulbs in hardware stores and you'll likely see people wearing blue tomorrow to show their support.  I just wanted to encourage you all to share in this day with those of us affected by autism.  Simply wearing blue and posting online or donating to autism speaks through their website or by purchasing a blue light bulb does more than you think. Let me explain.

We love Jacob so much.  I always want to be very clear that we are very thankful for who Jacob is.  But, like all parents, we want him to grow to be able to help care for himself in many ways and to not be in danger all the time.  Autism is a difficult struggle for kids like Jacob and for families like ours.
We have had situations lately where Jacob has run out of the house full speed into the street when the front door wasn't dead-bolted, he has a hard time in most buildings dealing with the noise and if he doesn't have his headphones we have to leave, he constantly climbs and stands on high window seals, he slaps or bites people when upset, screams shrieking sounds in public, unbuckles and climbs to the front seat (while I'm driving), gets out of the stroller or grocery cart and refuses to bend his legs to get back in or dashes off super fast (then I am stuck in the store with a cart full of food and trying to wrangle him with me to the check out), he refuses to leave the trashcan alone, won't eat, and takes off his dirty diaper immediately when we aren't around to help clean and sits on the floor.  A horrible incident happened the other day when he ran into the bathroom and turned on the bathtub and locked the door.  I heard Cret yelling to me to grab the tool to unlock the door, that Jacob may be in the bathtub.  He loves water, but can't swim and likes the sensation of swallowing the water.  It's horribly frightening.  We opened the door to find that Jacob wasn't even in the bathroom, thank goodness.  He had turned on the tub and locked the bathroom and then ran into his brother's closet all within 2 minutes.  We have to remind everyone to keep the bathroom locked or to stare at him at every moment of free time. I have to be on full alert at every possible second in my home or he will climb up the pantry shelves or flip off the sofa.  He has this constant uneasiness and restlessness, though he is always pretty happy.  I sat with him in his Bible Study a couple weeks ago and watched as all his classmates listened attentively, participated and answered questions while he fought me every second to simply sit and constantly hummed and sang throughout the class.  I'm not trying to complain about these behaviors, but these are the things that are daily struggles in our home that many people don't see or realize.  We can't visit friends for dinner or even for a play date without someone constantly running after Jacob so that he doesn't slam all their doors or run out of their house. 
These and more are issues that parents with kids on the spectrum deal with consistently.  There is little help and support (mostly because people do not know how to help) and not a whole lot of understanding in the community.  People sometimes stare, judge, or give advise that makes us feel like we aren't doing enough.  We love our kids and learn to be care takers and are happy to do it, but it isn't easy.  Showing support to your friends and loved ones by simply wearing blue can mean the world to someone who may be going through a tremendously hard time right now.  Its a free and easy way to say that you care about spreading awareness.  Have your family wear blue tomorrow and tell them the importance of showing kindness to individuals with disabilities.  You may never know what that kindness will mean to someone who feels very different. 

 I know I speak for my entire family when I say that the loved ones who have come out to the Autism Speaks Walk with us in the past or who have worn blue on April 2nd really encouraged us a great deal.  I know there are many families out there that are struggling and do not share their journey publicly, but would also feel very encouraged by their friends participation to show autism awareness.

What is autism?
Autism is a series of disorders in brain development in the areas of verbal and nonverbal speech and communication, social interactions and repetitive behaviors.  It varies in degree of intensity for each individual on the spectrum. 

*There is no known cause for autism.

*There is no cure for autism.

*Many families do not have the means to get the help their children need to learn even the very basic life skills necessary to gain independence. To learn more about autism visit

So, if you know someone with autism, I just want to encourage you to simply wear blue tomorrow and send them a message or post on social media that you are supporting them in spreading autism awareness! Show them some love. It means the world to families like mine!


 2 Corinthians 1:3-4 ESV

God of All Comfort

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.


No comments:

Post a Comment