10 Things We Want Our ABA Therapists to Know

We are embarking upon a new chapter in our lives.  This transition is definitely bittersweet.  We have decided to enroll Jacob into an ABA clinic that accepts our insurance and after a long waiting list period, he will be attending next Monday.  We are excited for this new journey, but with the change comes some sadness.  The therapists with Houston ABA that have been working 1 on 1 with Jacob will no longer be with him.  After coming to our home each day for years, they have simply become family and certainly are family to Jacob, so I wanted to list out the top 10 things that I really want Jacob's therapists to know. 

10. I know how stressful your job is and I am so thankful for human beings like you that work with special kids like Jacob and never let that stress show.

9.  Your enthusiasm with Jacob, your joy and laughter are contagious. No matter how you felt, if you were a little sick or sleepy, you always put on a huge smile and ran all around with Jacob just to help him and make him laugh. You are a superhero to us.

8. I am so thankful to you for never showing your frustration.  ABA is long tedious work with loads of data, data, and more data. Your never-ending patience is an amazing quality.

7.  Thank you for always being careful with my other kids.  They saw you coming in every day and often wanted attention or to tell you stories about their lives and you never blew them off.  You always took the time to make them feel important in that moment.  That kindness meant so much to us.

6.  I am so thankful for what you have shown me, my husband and my older kids regarding how to teach Jacob and how to play with him in a way that is both fun and a learning experience. What we have learned by simply watching you is worth so much.

5.  Thank you for not taking it easy on me, when you saw things I was doing wrong you called me out on it (in a kind way of course) and made sure I wouldn't keep making the same mistakes (ex. doing too many things for him that he could do on his own).

4.  Thank you for listening to me on hard days when Jacob was struggling with certain behaviors.  I bet you didn't know you'd be a counselor when you signed on to being a therapist. ;)

3.  If my husband and I could afford it, we would pay you a million + dollars a year, because that is truly how much you are worth to us.  Your work is absolutely priceless and one of the most important jobs in the world to us.  We never took you for granted and never will.

2.  We truly love you like family and I know Jacob loves you even more. 

1.  You may never know the impact that you have made on Jacob's entire life, our family's life, and our future.  The work that you have done with Jacob has completely changed him forever and has definitely given him a brighter future.  Through you we have seen Jacob learn to engage and smile at us, play with us, speak to us, call me "Mommy", say "I love you", learn to read, count, follow instructions. Without you, I don't know where Jacob would be.  This is truly life changing work and I hope you always realize how important your work is.



My Daughter's Poem to Her Brother

Yesterday I was typing up my autism awareness blog post and my daughter, Jordan, came in and asked me what I was writing. I told her that I was writing a post to remind people to wear blue tomorrow (April 2nd) in honor of those affected by autism.  She asked me if she could write one to tell people how autism has changed her view of special needs, so of course I said yes. I love her honesty because it shows that parents need to be actively teaching their children about acceptance and being kind to individuals with disabilities. She is such a beautiful girl. Below is her post.



Today is Autism Awareness Day… and my birthday. My brother Jacob has Autism. I think it is so cool how God works in His amazing ways, and he decided to make my birthday on Autism Awareness Day.

My name is Jordan. I turned 12 today and my brother, Jacob, will be 5 in June.  It isn’t always easy having a sibling with Autism, but it’s not impossible either. When I first found out that Jacob had Autism, I was very young, and I didn’t quite understand the pain it would cause, but I also didn’t understand the impact it would have on my life.

I first started to notice something when my mom started telling me something was going on with Jacob. I was scared for him. I wanted my brother to just be like any other kid. I noticed he wouldn’t say my name. Jacob wouldn’t even say “Mamma” or “Dadda” to his parents either.

Since Jacob gets more attention, I used to feel like he is loved more. But he’s not. My mom loves each one of us equally as much, and that will never change. I would also sometimes be sad because I never wanted Jacob to be made fun of by other kids. That’s when I realized my whole life, until Jacob was born, I wasn't very accepting to people that were different. I decided from that day forth I wanted Jacob to remember me as the best big sis or “Sissy” he ever had.  I do this by trying to help my mom by babysitting Jacob when she needs to do chores or shower. I try to push him to do things. And most of all, I constantly pray for Jacob every day, and that is the best thing you can do.

Jacob has inspired me to look at those who are different as a blessing because it is the different people that change the world.

Jacob has made me laugh my head off at times and he is the reason my heart is thankful to God for those who are different.

God created everything and everyone for a purpose, including kids with autism. I wrote this poem in honor of Jacob:

      You make me make me happy on the cloudy days,

      You make me thankful for you in all your ways.

      When you’re happy, when you’re sad,

       Even when you’re mad,

      I will love you always, even ‘till the end of my days.

      God put you in my life for a reason,

      I know I’m blessed by you every day, every week, and every season.

      Thank you for being yourself,

      And nothing else.

I thank my mom for helping me out every step of the way, and I thank God for choosing to give me Jacob as a baby brother.

AUTISM AWARENESS

Autism.

 

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 autismspeaks.org

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

³ Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, ⁴ 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.