A Success Story of early intervention

BY JACKIE SCHWABE

Yes, we would recommend Early Intervention. We learned how to play Zoe Kong. We learned there were lots of levels to the game. Every time we made it to the top of a level, every time we helped her learn a new skill, it felt like someone threw another barrel at us. Yet, she kept jumping over the hurdles and she kept climbing the ladders.

We already had two children, so we knew Zoe wasn't doing things the way the older kids did. Yet, we weren't expecting her to receive an autism diagnosis. Our journey started with dashed hopes and shattered dreams. Luckily, one of the steps in our journey was early intervention; early intervention allowed us to hope and dream again.

But... She Said "Bird"

We arrived at the clinic just like we arrived at all the previous appointments, hurried and hopeful. Zoe just turned two years old a few weeks earlier. This was maybe the twentieth appointment to help us figure out why she wasn't doing things the way our older kids did them. For some time, we thought she had a hearing deficit. When tests proved otherwise, we were told she might have autism and we should get her evaluated.

So, we arrived at the clinic to get her evaluated, just another step on the journey. She refused to walk, so I carried her on top of my fourth baby bump. You might ask why did I carry her on my pregnant belly? Well, not only did she refuse to walk, but would more than likely run directly into oncoming traffic if left to make her own decisions; so, while uncomfortable, not carrying her wasn't really an option.

We were a busy family, or at least I thought we were a busy family. Zoe's two older siblings were about to start attending a new school in only a few weeks and her baby brother would arrive in less than a month. We had no idea how busy things could actually get. (Ah, to be blissfully ignorant again, sigh.)

We were smart, we didn't google autism. The stories you find on any diagnosis on the internet can throw an otherwise optimistic parent into a deep depression. We were just here to get this particular diagnosis ruled out. Truth be told, we thought maybe she just did things her own way. Yet, we didn't want to leave that up to chance. Just in case she needed some support to be the best she could be, we wanted to keep trying to find out why she was a bit behind in her development.

The appointment was very long. It took nearly two hours. I thought the appointment went as well as could be expected. Of course, I had no basis whatsoever on which to judge. The evaluator was able to get her to interact, play on the floor, and Zoe even said her first word, "bird." So, I was surprised when we got to the end of the appointment and the evaluator said, "she is at least moderately to severely autistic." What the what?

I said, "but, she said 'bird'." The evaluator handed me a stack of papers and gave me specific instructions on how to get Zoe enrolled in approximately 40 hours a week of in-home therapy. I didn't hear most of what the woman said, to be really honest. I just kept thinking "she said 'bird.'"

She Might Never...

After Zoe was given an autism diagnosis, I dropped her off with her babysitter and I went to my office. I was so overwhelmed. I couldn't do anything other than cry. Of course, I was like 100 months pregnant, so some of it could have just been hormones. Yet, I kept thinking of all the things that she might never do; knowledge provided courtesy of the ever-so-tactful evaluator. I guess I was listening a bit when the evaluator debriefed me earlier, but I might have heard more of the "she might never" parts than the "she might" parts. Perhaps the evaluator was trying to keep our hopes down, so we didn't get too optimistic about treatment. If that was the goal, she achieved it with flying colors. I mean really, who wants to literally take hope from a parent? Doesn't seem right.

The evaluator told us how Zoe may never talk much more than she was now, that she might never look us in the eye, that she might never fall in love, that she might never move out, that she might never have children of her own and so many, many, many more things she might never do. We walked in the clinic hopeful, and we left with nothing but dashed hopes and shattered dreams. Luckily, our family isn't the type to back down from a challenge. After some time to adjust to the new diagnosis, we began to do our own research and to read the materials provided by the evaluator. As we read literature on different evidence-based therapies, we learned that early intervention was known to turn some of the "she might never" statements into "she might, just differently" statements. It was on like Donkey Kong.

On Like Donkey Kong...

There is no easy way to describe what it is like to have your hopes dashed and your dreams shattered. It is just as difficult to describe what it feels like when the flame of hope is ignited again and begins to burn deeply, and brightly. That is what learning about early intervention was for us, a flicker of hope. That is all we needed, just a flicker.

Early intervention is most commonly used to describe the services and supports that are available to babies and young children with developmental delays and/or disabilities. Sometimes, children who receive an autism diagnosis are referred to Applied Behavior Analysis (ABA) Therapy services. The evaluator, the one that we initially were so frustrated with, had referred us to ABA Therapy the day we received the diagnosis; we were just unable to hear all the details during the initial shock of the diagnosis.

ABA Therapy was very intensive for Zoe and the entire family. It was up to 40 hours a week of in-home therapy. There were up to six therapists on her case at any one time. We had a lead therapist, a Board Certified Behavior Analyst (BCBA), and a Clinical Director that we also met with frequently. There were weekly team meet ings that we were expected to not only attend, but to actively participate within. The team meetings were where we listened to and learned about her plan of care for the week. When the therapists were not in our home, which seemed like a rare occasion, our entire family turned into mini-ABA therapists.

This ABA thing, it was harder than Donkey Kong! Honestly, it might have been the hardest thing we have had to do as a family up until this point. Sometimes it felt like we were playing with a video game controller that wasn't configured as expected. The jump button might result in Zoe sitting. The right joystick might turn her left. Everything we did in ABA was to help our little person be her best, but her best was going to be a different game that no one had ever played yet, maybe we should call it Zoe Kong.

Learning to Play Zoe Kong

Zoe didn't do things the way her older siblings or her baby brother did things. Yet, when we first started the journey with her, we were told of all the things she might not be able to do. What we were not told was about what she might do, or what she might do exceptionally. 

While Zoe didn't do things the way her older siblings did, some things she did exceptionally well and even exceeded their abilities. While she didn't have a lot of luck with putting words together into a sentence that we could understand, she had no problem reading books her sister, who is 6 years older, could read. The first time we walked by her reading her sister's chapter book out loud was quite a day. It was kind of like finding a bonus room in Donkey Kong. It was hard to find, but really fun to watch and to play. Zoe couldn't tell us what she just read, but by golly she was reading it.

Things like toilet training took (um, is forever a time period?) longer than her peers. Yet, she could tell you every line in every movie she ever watched or listened to from the other room, or somehow watched from a past life or something. In fact, she would correct us if we said a movie quote incorrectly. If you paid attention when she quoted the movie line, you would be able to understand a bit more what she was trying to say. Often, she would repeat the movie line that corresponded to her feelings; if there was a sad part, when she was sad, she would repeat the movie line. One of our favorites lines was when she would say, overly adult and sultry, "You can tell a lot about a woman by the contents of her purse." It's a quote from The Incredibles. She used it out of context all the time, but it was always somehow perfect and hilarious.

So, while most kids playing Donkey Kong would jump over the barrels, Zoe would probably try to read the label on the outside or stack them all up in a corner. Zoe wasn't like most kids, but it turned out that none of our kids were like most kids. All kids are unique and wonderful and playing their own game. We wouldn't have known that if Zoe didn't receive early intervention services.

Would We Recommend Early Intervention?

I was trying to find some witty way to say, heck yes, but I was at a loss for witty words. I am probably at a loss for words because of how significant the results were for our daughter and our family. When we started our journey in 2013, our daughter could only say the word 'bird.' She didn't interact with others, she nearly didn't talk, she wasn't toilet-trained, and there were a host of other things she did not do.

Now, some 6 years later, she has learned more skills that I can write about here. She can do more things than she cannot. Her brothers and sisters are amazing little humans that love her unconditionally and protect her and others that seem to struggle with the status quo. So of course, this isn't exactly a fairy tale ending and she didn't come out of the story without a diagnosis. There are things she is still trying her best to learn and other things that she may or may not figure out. And no, she isn't like anyone else, she just Zoe … but Zoe is pretty great.

I can tell you without a single doubt in my mind, that if we had not found her the early intervention services she needed, the world would be missing out on all that is Zoe. I'm not sure if she would talk much. I'm not sure if we would know she could read. I'm not sure if she would let us hug her and give her good night kisses. What I am sure of is that she does all of those things now and I am filled with awe daily at what she can do. All of this because we changed our thinking from "she might never" to "she might."

Making it to the Top of the Ladder

So… yes, we would recommend Early Intervention. We learned how to play Zoe Kong. We learned there were lots of levels to the game. Every time we made it to the top of a level, every time we helped her learn a new skill, it felt like someone threw another barrel at us. Yet, she kept jumping over the hurdles and she kept climbing the ladders. She did that because she had a great early intervention team.

Our journey started with dashed hopes and shattered dreams. Luckily one of the steps in our journey was early intervention; early intervention allowed us to hope and dream again. Zoe's story is a success story. We hope Zoe's story can either give you hope or encourage you make a decision to start early intervention for your child.•

ABOUT THE AUTHOR: Jackie Schwabe is CEO of Mindlight, LLC. She is a Certified Caregiving Consultant and Certified Caregiving Educator. She received her BA in Management Computer Systems from the University of Wisconsin -Whitewater and her MBA in Technology Project Management from the University of Phoenix. She has been active in the area of healthcare integration, healthcare IT, telemedicine, product development, and product management for over 20 years. She has been a cross-sector, cross-discipline leadership practitioner her entire career. Jackie wakes up motivated to help others. Her mission, to provide the tools, opportunities, and connections people need to be their best self. A mother of four children — one with autism — she often says different is not less and communication happens in more ways than verbally. She co-founded MindLight, LLC as a way to technologically help caregivers.