with Bonnie Rinks:
Bonnie came at a very good time. I never really had any kind of counseling before, not that I didn't need it, I just didn't believe it would do me any good. Well, Bonnie did a good job proving me wrong on that one.
For a while we discussed concerns I was having about Crystal and her therapies. I just was not happy with it at all. I was losing so much faith in her PT and OT both.
Her OT just didn't get along very well with Crystal and a lot of time was wasted trying to get her to calm down so she could do her therapy. Also, I know I told her 20 times that Crystal's runny nose and congestion was not a cold. She has problems with excessive secretions which is directly related to SMA. It was as though she wasn't even acknowledging that I knew what I was talking about! Being newly involved with neuromuscular issues, I didn't feel that she was training or communicating with me very well either. Most of the info that I discovered was through her Developmental therapist, message boards, other children's websites, or my own evaluations of Crystal. Once I saw it while observing Crystal, I then asked her OT and further explanations were given at that point and the treatment was able to be started. I just thought that was wrong. I haven't been trained and heaven help Crystal if she had to depend on me to make sure that everything was going okay with her body functions. There were a lot areas about SMA that she needed to know and when I asked her if she would invest some time into researching to get a better understanding of Crystal's needs her reply was, "I have a husband and daughter at home. When I leave here they are my priority."
PT was just a plain nightmare with about 5 sequels each just as scary as the first. No lie! I don't know if she knew what she was doing or not, but she just did not benefit Crystal at all. She was not picked by me, Crystal's PT had injured her back and they just started sending this other therapists out to cover for her. At first I was really impressed, because she didn't say anything she just positioned Crystal and began working. She did therapies with Crystal that her other therapist had never done before, like getting her up on her feet. But as time when on we found out that Crystal's therapist's injury was permanent and this other girl was going to replace her, things just kinda went downhill. Issues came up that we needed to discuss and we always seemed to disagree with having different ways of doing things, end result nothing would get done? Like her way or no way?! There were even a couple of instances where Crystal's safety was at risk and because of her poor communication skills, nothing got done. She absolutely must despise P/A for medicaid because every time we discussed needing something for Crystal, I always heard, "Medicaid won't pay for that." End result, Crystal got nothing, nor was any attempt made. I also heard a lot of, "Let's wait and see what Crystal is going to be able to do." Finally, when I said we can't wait anymore, we had two very important items that needed to be ordered: The wheelchair and the gait trainer. Then I heard, "Medicaid only approves medical equipment once a year. I needed to make a choice between the two." Not knowing any better, I said the gait trainer, and I would try MDA for the chair. I called her twice that week, because she was going on vacation and I wanted it done before she left. The last she said was that she was going to dictate the letter on the way to an appointment. When she came back from vacation, I asked where we were at with it and her answer was, "You need to decide which equipment you want for Crystal because Medicaid won't pay for both." What? I thought I was going crazy. This was supposed to be a professional getting paid good money and this is part of their responsibilities. Another issue was that Crystal would fall a lot with her and hit her head, and even worse she wouldn't even stop to show compassion to her? When she got Crystal's stander in, she didn't even adjust it right. When I got it home I had to go over it again and align it so Crystal wasn't standing crooked or sitting on the bar she had positioned under her tush. What? Is this normal.
One problem, I believe both OT and PT shared was working at the Rehab Center. It is my opinion that due to the quota they had to keep on clients, they just were overloaded with children and left so little time out for anything else. Which would be poor management of the rehab center, which the more I learn seems to be common for several institutions for these fragile children.
I was depressed and having anxiety attacks. I just didn't know how to handle all these problems. Guilt was just eating away at me because I thought it was my fault. I thought that they were being like this because of my poor communication skills. I felt like I was letting Crystal down. I had never amounted to nothing in my life. Failed at almost everything I tried to do. And mostly I would just get so depressed that I wouldn't even try to do anything because I knew I would fail. I felt that all of these medical issues were just way over my head and I had no way of getting any of the professionals to listen to me simply because I didn't speak their language and I wasn't trained. I felt so stupid, but I also got very mad too. Because I may not understand all the what to do's and the why's or how's but I knew Crystal through and through. I know her better than anybody and she was in need of help and she wasn't getting it the way things were going. Basically, for a few months, I was literally going insane, losing my mind and dragging my children down with me.
Bonnie took things step by step with me. We worked on one thing at a time. She emphasized over and over the importance of logging every thought. Making out written lists of things I wanted to accomplish. Soon, I was documenting everything related to Crystal's care. She showed me how important it was to stay on top of things and stay organized. I had lots of problems clamming up in the middle of a conversation with her therapists because as they were "debating" the issues with me I would get so stressed that I would just draw a blank because I couldn't get them to see where I was coming from. I couldn't even get them to understand how important it was to Crystal.
Bonnie is the one who is responsible for getting me to finally replace Crystal's OT and PT. Which was the most wonderful thing. Now her team is just awesome. I can never say enough to get people to understand just how lucky Crystal is to have the team she has now.
Being single with 5 children, 4 living with me, 1 being disabled, with the ages of 15, 11, 4, 2, and 1 I was constantly staying busy trying to make sure that not only Crystal got what she needed, but that my other children weren't totally neglected either. Plus their Dad being a dead beat alcoholic, made things even harder because I have no break. All the time I was investing in research for Crystal and going to school doing my homework and studies, plus we were living in a shelter which was good for our future, but it was so stressful staying there. Bonnie taught me to understand that what I have on my shoulders is not something that can be handled always and I may need some help from medicine. She convinced me to consult my doctor about getting Paxil. Which my doctor prescribed Celexa instead, but serves the same purpose. This made a huge change in my life. I was no longer having problems getting up in the morning or wanting to sleep during the kids nap time. I didn't get stressed and angry as much and I was able to stay more focused on what I was trying to get done.
Bonnie has been a blessing. One step at a time, she was able to assist me in changing my life toward a more beneficial direction for myself and all my children. Especially with Crystal's needs be so fragile and demanding, she really saved us from having a very negative and unhappy life. It is without doubt that if things had continued the way they were, Crystal would not be where she is at today.
|Even though Nicholas doesn't need any form of CPT, Bonnie was keeping Nicholas busy while I was giving Crystal her|
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