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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Raven and Reine

It has been a LONG process training our dog to become a Service Dog. I wish I could go back and redo a lot of it because there were so many mistakes made. But I can not go back and the hard truth is, Raven has a long way to go before she can be considered “service” worthy. We have not given up on her training.

For a while, it seemed as though it was not going to work at all between these two. Their bond did not come easily and was not second nature at all to either of them. I refused to “force” them to bond. I am not even sure if that would be possible. Somewhere over the last couple of months, these two have created their own bond. It is becoming a strong one.

If Reine is gearing up for a meltdown, Raven will do everything she can to lay on top of Reine to hep calm her. She will not leave her side until she knows she is calm again. If Reine gets sick or has a CVS flare up, Raven will NOT leave her side until she completely feeling better or over the flare up. Reine has started calling Raven to everywhere she is in the house. I often find them together Raven keeping a protective stance or eye on her.

Reine has begun to tell her she loves her and to hug and kiss her. This is completely new treatment towards Raven.

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Doctor’s Appointments

Reine has a very large and hefty fear of doctor’s appointments. If she has to have blood work or a vaccine, it is almost crippling. Anxiety will set in, to the point that she experiences panic attacks and causes herself to vomit, have loose stools, and even shake uncontrollably. This is something we have been working through together for almost 2 years now. It has been a slow process. But we have it down to a science now.

I start about 2 weeks before any appointment and begin to talk to her about what they will be doing and what she can expect from this appointment. We decide who else will be coming with her to the appointment besides myself (sometimes her oldest sister has to be there for extra moral support).

We spend the week before the appointment going over everything several times a day until the day of the appointment. By everything, I mean everything. From who will be with her that day, to how we will be checking in, to who she see that appointment. If she is seeing a nurse first, then she is prepped for the intake and everything the nurse will do. If the doctor is seeing her as well, she is prepped for what the doctor will be doing. If she needs blood work or a vaccine, BUZZY is with us and she knows exactly what is going to happen step by step.

  • What time we will get up that day.
  • What outfit she will wear.
  • Who will be with her that day other than Mommy?
  • What time we will be leaving for the appointment.
  • Where the doctor’s office is located.
  • What this particular appointment is for.
  • How we will be checking into the office.who she see that appointment. I
  • Who she see at that appointment, doctor, nurse, both.
  • If she is seeing a nurse only, then she is prepped for the intake and everything the nurse will do. Taking her height measurements, weighing her, checking her body temp, checking her blood pressure and pulse ox. Asking her and I questions.
  • If she is seeing the nurse for intake and the doctor after, she is prepped for what the doctor will be doing. Asking her questions, pushing on her tummy, listening to her heart, listening to her lungs, shining the light into her eyes, nose, and ears.
  • If she needs blood work or a vaccine, BUZZY is with us and she knows exactly what is going to happen step by step before we get there.

Letting her know what is going to happen is crucial for Reine. She needs to have her million and one questions answered and her fears validated and calmed before we even enter the doctor’s offices. It is how she is learning that these appointments are needed to help keep her healthy and that together, we can conquer her fears together.

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Buzzy

When I tell you that Reine is terrified of “bloodshots” AKA needles, I am not exaggerating at all. Her older sis is the same way. Where they got this from is completely beyond me. While her father, oldest sister, and myself do not exactly love the thought of getting stabbed with a tiny metal tube, we do not fear it either. It is more like “Can we please just get this over with so that I can move on with my day?”. They, on the other hand, freak the hell out. It takes 5 plus people to hold them down for any blood work that they need. Vaccines included. Reine would be so terrified that she would make herself physically sick (vomiting, loose stools, and shaking uncontrollably) when she found out about anything she needed relating to a needle. So, I knew needed to find something to help them get through the sheer panic of just hearing the words blood work or vaccine. Lavander essential oil was just not enough to calm their nerves.

I stumbled across Buzzy in my quest to find something to help them and decided to give this little gadget a try. For those of you not familiar with this device, it is a small “insect” shaped device that uses a patented Cool-Pulse™ technology. In their own words “Buzzy® uses natural “gate control” pain relief by confusing the body’s own nerves, thereby dulling or eliminating sharp pain. In the same way that rubbing a bumped elbow helps stop the hurt, or cool running water soothes a burn, Buzzy® controls sharp pain.” 

You can purchase a Buzzy either on their site or via Amazon.com. They come in 2 sizes, mini or XL. They also have a couple of accessories you can purchase separately or you can just buy a kit that contains their distraction cards, bravery stickers, and a kazoo for all ages. The kits start at about $50. It may seem steep, but for us, it has been worth every freaking penny of it. I am not sure if the kazoo is still a part of their kit or not, but it came with ours and is a favorite distraction tool. If you are a professional looking into Buzzy, for your office, they got you covered there too. Seriously, I am in love with the neoprene cooler bag. Ours did not come with it. We got our kit in a small clear tote.

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Our Experience:
Buzzy works to help relieve most (if not all) of the pain from vaccines and “bloodshots”. It also calms both of my kids down by more than 60%. There is no longer a need for 5 people to hold them still. It is usually just myself. I am not saying that they still do not cry or have a couple of minutes of panic, but it is not such a fight anymore. They will not have anything done with needles without Buzzy with us.

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Disclaimer:

I am not affiliated with Buzzy in any way. I did not receive any compensation or product for a discounted rate or free for this post. I just wanted to share something that has worked incredibly well for Reine and her sister. All Buzzy pics in this post are from the Buzzy website. Seriously, you should check them out!

Here is their link if you missed it in the post.

“Wait” Cards

Reine was recently diagnosed with ODD tendencies in January of 2017. We began going to Behavioral therapy immediately. Reine’s Behavioral therapist is well worth the hour long trip (one way) each week to see her. The therapist has given us a light at the end of what has been a dark tunnel. We dove in headfirst and have been implementing everything since.

“Wait” Cards and Timer:
The first thing the Behavioralist had us do was use “Wait” cards and a timer with Reine. The reason for the cards was that Reine would get livid if she asked us to do something or to get her something and her needs were not met in that instant. She could not make the connection between waiting for a few seconds and her needs being met. The “Wait” cards and timer have done just that.

I created mermaid themed “Wait” cards for Reine and laminated them. The cards are placed in a container (with a magnet) on my fridge along with 2 different timers. We focus on using the timer for 10-15 second sessions with the max time of 2 minutes (only when I need to do something like wash my hands).

Reine: Mommy, I am thirsty.
Me: Ok, give me a sec to get you a drink.

Reine picks out a “Wait” card and brings me a timer.I set the timer for 10 seconds. She uses the “Wait” card as a place holder. It tells her that her needs will be met she just has to wait. The timer is set for 10 seconds and handed to her. She presses start and watches the time go down. Once it beeps, she hands it back to me along with the card and I get her a drink immediately.

Me: Thank you, Reine, for waiting as patiently as you could while the timer counted down.
Reine: No problem.

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