Bittersweet Goodbyes

Disclaimer:
I have read, heard, and cried at the many many many stories about ABAs, Behavioral Therapy, and the abuse that occurs within the autism world. I have had friends that left Behavioral Therapy because of the treatment of their children by the therapists. At no point was punishment a part of Reine’s therapy. I was never asked to sit in a different room while she was in her sessions. There was never a hand laid on her by myself or the therapist at ANY time nor was it suggested. Nothing was withheld from Reine as a form of discipline or punishment.

Before you blast me with hate emails, negative comments, etc I hope you take the time and read about OUR experience. I have no doubt that we were “lucky” with our therapist. Not all Behavioral Therapists are the same. Ours happened to be extraordinary! I was given permission to post the pics of our incredible therapist with Reine.

The hardest part about therapy is when it ends. You are left on your own, hopefully, with all the tools, you need to be able to navigate the world around you better than when you went in. It is scary when you leave the therapist’s office for the last time.

In January of 2017, Reine began Behavioral Therapy for Oppositional Defiance Disorder (ODD) tendencies.  She was not officially diagnosed with ODD because I stopped almost all contact with the outside world not allowing her to hurt non-family members. I was too afraid of having the police/Child Protective Services called on us or being sued if Reine hurt another child.

Behind closed doors, we were living in a nightmare that seemed to be endless. We were unable to open windows because of the constant screams of anger that erupted out of nowhere or the intense meltdowns that sounded like I was physically hurting Reine to anyone passing by our home. There are holes in many of the doors and walls, door jams splintered, paint scraped off down to the drywall, and so many smashed toys. What seemed like endless bottles and tubes of shampoos, conditioners, dish soap, hand soap, lotions, deodorants, body washes, toilet paper, wipes, and spices to name a few, were being replaced weekly because Reine would hide and empty the contents. Bedroom doors had to be locked at all times. Dinner was started at around 7-8 pm because I could not keep an eye on Reine and cook food at the same time. I refused to accept that this was our lives but in reality, it was.

The Developmental Pediatrician and I went head to head twice in the battle of Momma vs Doc (who sees my child once a year for roughly 10 minutes) when I refused to put Reine on medications, instead, begging for a behavioral therapy referral. The Doc thought that meds were the answer instead. Needless to say, I won this round. We were placed on a 9+ month waitlist twice thanks to issues beyond our control.  I knew in my soul that medications would not solve Reine’s issues, they would only mask it. I wanted to know what the disconnect was that was happening between her and us that was causing the behavior. I wanted the tools and strategies that we needed to correct it.

The day I got a phone call telling me we finally were given an appointment to see someone in behavioral for an evaluation, I cried. I had so many expectations riding on this one appointment and this one therapist. During the evaluation, I laid everything out on the table for the therapist. I do mean everything. If this woman was going to help me, I felt she needed to know it all. I had no one left to turn to for help with the nightmare we living in at that moment, except for her.

After I told her everything, I heard the words that completely and utterly changed my life… “We can do this.” I left that evaluation in tears. I had no idea what to expect beyond this meeting but again, my gut and soul were telling me that this was one of the many missing pieces between Reine’s world and ours. I knew I would give it everything both Reine and I had and then some to help both of us escape the hell that was our lives.

For 10 1/2 months, I drove an hour (sometimes more depending on traffic) one way, almost weekly, for Reine and me to meet with Christine. This petite, beautiful soul of a woman. As I write this, I am in tears. I know that Christine has no idea of the full impact that she has had on my family. I don’t even know how to repay her for everything.

We began with the small stuff that we could easily navigate through first and make solid, quick changes that would be easier to piggyback other more difficult behavioral changes onto. Every session meant homework for us. I took every single thing Christine gave us and implemented it in our daily lives immediately. Some of the things, I am not going to lie, I thought they would never work. But I still did it. I customized what I needed to for Reine to adjust and adapt to make it easier (always with Christine’s knowledge and OK) making it a part of our daily lives. Each day got a little bit easier. Each week got a little bit easier.

Some of the things we did with Reine…

Timeout Bench
This was a dedicated bench for Reine to use for timeouts only. When she did something that was not acceptable she was placed or told to go to her time out bench where a timer for 2 minutes was set. This was for her to take a breath as well as us. There was no berating, freaking out, lectures etc. We told her in one to two sentences that her behavior was not acceptable and why. When the timer went off, she came out of the timeout and it was not mentioned again.

My Way, Your Way Cards
These cards are used with a timer so that not only did Reine learn that there was more than one way to use something or do something, but to also take turns.

Wait Timer
This is a timer we use for her to see a visual countdown so she can wait patiently for someone’s immediate attention. We set it for no more than 3-5 minutes. When the timer goes off, we stop immediately and listen or do whatever Reine needs.

Charts
I created several charts for Reine to use that helped her to see things visually but also as a way for her to see the information she was asking me about over and over again.

    • How Long Until Chart and Calander
      This set is used to help Reine see a visual countdown until someone comes home, visits, we go on vacation, or for an event.
    • Ask Mom Chart
      This chart was amazing because it allowed me to set a number of times Reine was allowed to ask me the same question over and over and over again. It showed her visually how many times I would answer the question before I stopped answering it.
    • Expressing Wants and Needs Chart
      This is a reward chart. Each time she expresses her wants and needs to us in a positive way, a circle gets filled in. If she doesn’t then a circle gets unfilled in. When the chart is completely filled in, she gets a reward. The reward is something she really wants. She strives to fill it out and is so proud of the reward that SHE earned.
    • Following Directions
      Just like the Expressing Wants and Needs Chart, this chart uses rewards to help her understand the concept of following directions.
    • Reducing Anxiety
      This chart is another reward based chart. It is used to help her calm down, taking deep breathes, and telling me or others how she feels and to work through her anxiety. Unlike the other charts, she doesn’t lose circles if she can’t do something on the chart. We repeat the steps over and over until she can.
    • Who Is Home Today
      This chart is used to show Reine who is going to be home and who isn’t for the day.
    • Homeschooling Charts
      These charts allow Reine to see the progress of the day and how many more things we have to do before she is done with school that day.
    • Let’s Play Chart
      This chart allows Reine to pick things to play/do with us in particular. Many times Reine wants to go from one thing to another to another to another without cleaning up and gets frustrated when we do not know these wants.
    • Now, Next, Later Chart
      This chart allows Reine to see the big things we are doing in order.

How do you say “THANK YOU” to someone that helped you in ways you can’t begin to describe…You can’t. You can only continue to do the things she helped you to learn and to make her proud of the progress you have continued to make.

As part of Kennedy Krieger Institutes rules, Reine is not allowed to see Christine anymore. It has been a LONG and HARD transition for her. She adored Christine and was so confused by this process. She retaliated and backslid in hopes of seeing her again. She still asks about her and begs to see her on a regular basis. It breaks my heart every.single.time. I have to tell her she is not allowed.

Christine, if you ever come across this post and read it, know that you are so very much loved and missed. I can not begin to tell you what you mean to me personally. I owe more than you know and I can ever repay you for. You are damn good at what you do. Never forget that. Thank you so much!

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