Input From The Behavior Therapist

Last week, our behavior therapist came when our respite worker was here so he could make sure that things are staying consistent and that everyone is on the same page. He put a couple procedures in place, one that I particularly knew Mike would have a hard time with, so today he came to specifically meet with Mike and review everything.

I've touched in the past about how the hubby is extremely emotional when it comes to all three of his girls. He always tries to fix everything, and has a difficult time watching any of us, particularly Raquel, struggle. If he is outside working or in another room and hears her carrying on a bit, he immediately comes to her rescue. That is not in her best interest, and although he's been told this over and over by practically every therapist we've been fortunate enough to work with, I think he really needed to hear it coming from a guy. And Mike, our therapist, did a great job explaining it all to him. And this time, I think Mike, my hubby, really listened.

One of the things Mike worked with me on last week was how to reduce the inappropriate behaviors. By catering to these, we are teaching her that when she acts up, she gets rewarded by getting our undivided attention. I have definitely grown in this area with help of many behavior therapists, and when she throws herself down on the floor and starts kicking, I easily tell her to knock it off and go about what I was doing. But I learned last week that although I don't acknowledge them physically, I am being WAY too vocal with her, and by doing so, I'm still reinforcing the behavior. I may not be sitting on the floor with her, but she still wins by getting my attention with words.

So last week, I started doing things a bit differently. If I was interacting with Raquel and she did something aggressive such as hitting, scratching, etc., I immediately put her down or walked away from her - without saying, "Ouch!" or "No hitting!" or "That's no!", or even making eye contact for that matter. And this was a real tough one because your automatic reaction is to be verbal. But by not reacting vocally, I can honestly say that these aggressive behaviors have decreased over the week.

The other thing Mike implemented last week was Raquel following instructions. This teaches her who is the boss. He demonstrated this activity by doing clean up. He first told her to sit down, which she eventually did after about 30 seconds. Then he asked her to put some toys in their container. We can never verbally give the instruction more than 3 times, but can use non-verbal cues such as tapping the floor for sitting. The goal is to "wait it out" until she does what is instructed. This shows her that even though she is very stubborn, I am more stubborn than she is and will win. When she follows the instruction, she is rewarded by praise, high fives, etc. I can do this activity anytime I give her instructions, and I didn't realize how often I did just that throughout the day with a variety of activities. And if I don't have time to "wait it out", I help her follow through with the instruction then go about our business. Again, great results with this one. After just a couple days of telling her "arms up" to help her undress herself before the bath, she will now walk over to me with her arms already lifted once she sees me start running the water, or immediately do it once instructed.

Mike was very pleased with my feedback and said that if I consistently keep doing both of these activities, I will see amazing results in just a short amount of time. It will not only eliminate the aggressive behaviors, but will also teach her what appropriate behavior is and will help in all areas - including her interactions in school.

I am very thankful to have the guidance of another wonderful therapist. We meet again in two weeks. I'm pretty confident that I'll have more success stories to share with him then.

Blood Work Complete

I finally got a call back from one of the neurologists and was told I could go to the lab and have the blood work done before her first dose instead of before the second. I went yesterday morning, and was fortunate that the lab was open even though it technically was a holiday. And even more fortunate was that only one other family was there when we arrived, and they were just finishing up. I literally signed in, answered a couple of questions, and was called before I could even take a seat.

I'm a wimp when it comes to having blood drawn from Raquel and struggle with holding her down. I have to be the bad guy enough just giving her the meds 3 times a day! They obviously noticed my hesitation and said I could wait outside, which I gladly did. After a few moments of hearing her cry, out she came with a Care Bear band aid on her arm, and she reached out for me as soon as she saw me. Mission accomplished.

I did forget about Dr. Mower requesting a urine sample as well, and she was not cooperating in that regard due to lack of fluid consumption. Now I have to collect the sample myself and then drive it back to the lab within 2 hours. Once that is done, all tests are complete until the EEG in August.

I did get info regarding the 24-hour inpatient video EEG thing. It really doesn't sound like too much fun. I have to keep her up until midnight the night before, then wake her up at 4am and keep her awake until we check in at 9:15am. And no sleeping in the car on the way down there. Once there, we have to take the shuttle to the EEG building, get the thing strapped to her head (with only 4 hours of sleep in her), and then I guess get placed in a room where she can be monitored for the next 24 hours. Good times. Hopefully I'll get a bed, too.