One Chapter Ends and Another Begins…..

 

Kyle had been receiving ABA services (behavior therapy for autism) for about 2 years when his case supervisor sat me down in my dining room and told me that he was out of ideas for Kyle and I should probably look into switching to another company if I wanted to continue services for Kyle. What the?!!  I felt like he might as well have said, I’ve given up on your son, so see ya later!   The process to switch companies was a long process that would leave Kyle with no services for a few months.  But at this point I had no choice.  We needed a team that was willing to put in the HARD work and time Kyle required.  So we started the process of switching and I crossed my fingers and prayed I picked a better company this time around!

I met Ciarra at Panera Bread for the first time.  She was a cute, young, bubbly, but YOUNG girl.  My first impression of this new case supervisor of this new company, was she’s so nice…..but is she up for this challenge?!  She spent a good 2 hours asking me lots of questions about Kyle and listening intently to me describe his behaviors and the issues we were struggling with as she took detailed notes.  At the end she looked me straight in the eye and said, “this is an extremely difficult case and it’s going to be really hard finding someone that is willing to endure the challenges Kyle will throw at them every day.”  I immediately felt myself tear up, hearing the words ‘your son’s case is extremely difficult” is hard to hear-even though I am fully aware of how hard he is!  She reassured me before leaving that she was up to the challenge and she was confident that she could find a therapist that would be a fit for Kyle.  I left feeling hopeful and discouraged all at the same time-if that makes sense.

A few weeks later Ciarra called to let me know she had a therapist in mind that might work and wanted all 3 of us to meet to discuss Kyle.  We met at my house while Kyle was at school.  Erika walked in…again she was so YOUNG!!! We sat at my kitchen table and Ciarra started to tell Erika about Kyle and all his behaviors.  I found myself slumping down in my chair as she spoke!  How would anyone want to take this case after hearing that Kyle is super aggressive, he throws up, he throws himself on the ground when having a meltdown, he strips, he’s a big boy and list kept going.  Erika sat with a poker face taking notes as fast as Ciarra was talking.  I couldn’t read her but I was having anxiety just listening.  I knew she was gonna walk out and tell her supervisor, Ciarra, there was no way she was taking this case on!  But to my surprise, by the end she asked when she was starting- with her smile and nervous laugh!

I met with Ciarra several times before Erika started.  I learned all about ABA-the terminology and the theory of it!  Ciarra was great with giving me reading material and applying the principles of ABA directly with examples of Kyle’s behavior so I could better understand why I should react one way or another.  It was important for me to understand so that when Erika and Ciarra weren’t around I could apply it by myself and also when I was helping Erika in the beginning!  It was extremely helpful! One of the many reasons Kyle is so difficult is because his behaviors serve many purposes.  When he throws up it could mean he is anxious and is physically sick.  In that case the appropriate way to respond is to reassure him he’s ok and direct him to a place to throw up.  But if he throws up because he is trying to get out of doing a non preferred activity like getting up and putting something in the trash can, the appropriate response would be to tell him he’s all done and clean him up and follow through with making him throw the trash away.  He is like this with every behavior.  So, unless you know Kyle and how to respond to the function of the behavior it’s hard to respond to the behavior correctly.   (This process has taken Erika and I years to master!  It took many years of trial and error.  ABA is kinda complicated and takes a lot of practice but when its applied correctly it can help tremendously!

We decided that the best approach with Kyle would be to have Erika come every day and build a relationship with him.  Place no demands on him.  Just be his friend. Kyle is very anxious and relies heavily on those people that he trusts to know what he is needing at any given time.  So I knew it was going to be crucial for Erika and Kyle to establish a relationship of trust before she would ever get any sort of cooperation out of him.  That first day she showed up I knew she was different than anyone else.  She had this determination and drive about her that I knew was going to help me and Kyle. 

After those 2 months we met as a team (Ciarra-case supervisor, me and Erika) and discussed what we would do next.  Kyle’s list of things to “get done” was a mile long…so we made a list of the most important things to accomplish and came up with a program for each of those things.   One of the big things was getting him to appropriately play with something and transitioning back and forth to preferred and non preferred activities-with no behaviors!  Sounds easy enough, right?! If Ive learned anything its, nothing is ever easy with Kyle!  Haha

Monday came and we were ready to go!  Or thought we were.  That day was so hard.  I cried multiple times as my son bit and scratched and hit and kicked both myself and Erika every time we tried to get him to do anything.  That first day I told her I wouldn’t blame her if she didn’t come back as I fought back tears.  It was hard-physically and mentally.  But we learned a lot that first day, we made changes to our approaches and continued to tweek things for weeks until we got into a routine that seemed to work for Kyle.  I wanted to quit almost every day, I can only imagine how Erika felt.  But every single day she showed up and put in 100%.  She still treated Kyle with love and respect despite the bruises and bite marks he would leave her with day after day.  She kept me going…She pushed me…she made me feel like I could keep going, cuz she was.  But, man, it was so hard…it was exhausting.

After a few months we could see small changes but more importantly we were starting to understand Kyle’s behaviors better so we reacted with the appropriate response which meant we were getting less inappropriate behaviors.  With Kyle, I have learned that his victories are often slow and small but they are victories and need to be celebrated!  Every time Ciarra came into the home (which was every couple of weeks sometimes once a week)  she saw improvement, which made me want to work even harder!

After about 6 months (Kyle was around 9.5) Ciarra and Erika convinced me that Kyle was more than capable of being potty trained.  This task made me ill to think about.  It seemed like more work than I was up for.  But Erika was once again so encouraging and determined to make it happen.  So she rolled up her sleeves and was ready to tackle potty training! And after only 6 months (lots of hard work, lots of tears and lots of accidents), Kyle was fully potty trained.  There is no way I could have done it without Erika cheering me on and helping me every single step of the way.  Erika constantly gets me out of my comfort zone and pushes me to do hard things with Kyle!  She is ALWAYS willing to try new things no matter how hard it is. 

A few years ago my mom planned a family vacation to Big Bear.  Having Kyle restricts us from doing any type of family vacation. He doesn’t do well out of his routine and home is his comfort.  Erika offered to come with us and help in any way she could so that we could participate in this family vacation.  It was the first family vacation we had ever taken!  She is always willing to go above and beyond to help me and to help Kyle.

Being a mom to a child like Kyle can be lonely.  Other moms can’t relate.  They just can’t.  Being a mom to Kyle is much different.  I have friends that I love and adore but they don’t understand the struggles that I endure with Kyle.  And sometimes that’s hard.  Having Erika has helped me in so many ways, she will probably never fully understand the depth of gratitude I have for her.  She is a friend that understands to some degree like no one else does.  I can text her about a meltdown any day of the week and know her response will be filled with true understanding.  She can walk into my house and see my face and know it’s been a rough day, instantly she takes over Kyle duties without me saying anything.  For the past 5 years Erika has been my strength.

This last Monday was Erika’s last Monday.  She will only be working with Kyle on Wednesdays at my moms and that will be ending very soon too.  As I type this out my eyes are filled with tears.  I know that because of Erika pushing me, I am a better mom to Kyle.  I know that our family is better able to love Kyle because of Erika. And most importantly, I know Kyle is better able to cope in a world that is much different than his because of Erika.  Finding someone like Erika isn’t easy-Ciarra keeps telling me that I was spoiled with Erika!  I am so grateful she sat at my kitchen table that day 5 years ago, listened to how hard Kyle was going to be, and decided she was up for the challenge!  I am grateful that she has come into my home every day for 4 hours for the last 5 years and loved my son despite the challenges he throws at her daily.  I am grateful for the love she shows all my kids.  I am grateful for the 5 years she put into bettering my family.

I don’t know how it will turn out with our new therapist, Zack but I’m trying really hard to be hopeful.  I know that those that have been put in Kyle’s life have all served a purpose,  and I look forward to seeing what purpose Zack will serve in this chapter of  Kyle’s life, but I can’t help but be sad as we say goodbye to the Erika chapter.  kyle and erika

 

 

5 thoughts on “One Chapter Ends and Another Begins…..”

  1. Katie, I cannot even imagine the struggles you have. God certainly blessed you giving you the tools to accomplish working with Kyle. Bless your heart. I have so much admiration for you and James and your family. You have probably the equivalent education of obtaining a PhD. God bless you all.

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  2. Katie, this leaves me speechless. I understand better after just reading about the past 5 years with Erica. I cried through the whole thing . I love you and I am so thankful James found you. I am so proud of my son and the man he has become. Especially blending a family and taking on Kyle and loving and supporting you❤️

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  3. It takes a very special parents to have a very special child like Kyle. And God knew this. And he will never let you down. I will always have A prayer in my heart for you and your family. And I’m always going to think positive thoughts for you.

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