I hope you look in here because this section has been included specifically to show everybody with a child with such a fragile disability that developing a therapy team for your child is not the easiest but once you fight for what you think is best for your child and you see how wonderful her therapy team is and how much she progresses in her abilities, you will be able to finally relax and take a big load of stress and worry off your shoulders.
The highest most respected character in any therapist, to me, is being able to trust them. Not only the concern they have for my child but also trust in the knowledge they have for the best care for my child possible. I have to trust that they are going to be willing to fight for her benefits 100% and not let red tape slow them down from getting what my daughter needs. I have to trust that they will understand how active I am in my daughter's life and that sometimes I may be a good resource for them to turn to when they have questions or concerns about my daughter. I have to trust that they will continue to communicate with me over even the littlest issues, not expecting anything but for Mom to stay informed of all concerning her child. I trust that most, if not all therapist do good in one way or another in taking care of their clients. But I am here to say that there are flaws in the system. For whatever reason, maybe, different learning institutions, different interpretations, different energy levels?? I don't know why, but therapist have a wide range of ways to treat the same disability. I had a big struggle with this. Bottom line, they are the professionals with the knowledge and I am the one that is in control of interpretating that into my family values. I believe that the best therapist a SMA child could ever have would be one that 1.) Is genuinely compassionate toward your child. 2.) Strives to give the child the most possible benefit with the families values. 3.)Is opened minded enough to expand their knowledge to best care for the child. I believe that with these qualities, any therapist is capable of taking proper care of my daughter.
We started out so naive. Trusting that whatever the therapist said was the right thing. Being home with my daughter all the time is what helped me to see that this is not the case. What they told me didn't not always match up with what I thought was best for Crystal. I thought I was going crazy for a while, because how could I, an uneducated factory worker, doubt the words of a trained professional? I wanted stability for Crystal. Even though we didn't see eye to eye, I didn't want to bounce from therapist to therapist, for fear that this was just the way it was to be. But I saw, over time, many mistakes. Many things that I knew there had to be something better to try. Things got so bad that a month after I told the therapist what I wanted her to do about an issue, I asked her what was being done about it and she responds that she needed me to understand all the options and to decide one or the other. What? I told the what's, why's and that I understood. Then after receiving a medical equipment that required adjustments to fit Crystal properly done by the therapist, when I saw how off balance my daughter was, I knew something was terribly wrong with this therapist.
But I really thought what is going to stop this from happening with the next therapist? The information that we are given to select a therapist from just does not cover what they are like hands on. I believed that therapist bouncing could be just as harmful to my daughter as a ignorant therapist. I also hadn't understood that I was allowed to contact the therapist on the list and even interview them. Well, Crystal's wonderful case manager suggested that I call them and talk to them. And told me that it was allowed to interview them. And that is just what I did. For a month I had one therapist after another, both physical therapist and occupational therapist, come out and talk to me. I had notes and questions for all of them and wrote down their responses to everything.
Best decision I could have ever made for Crystal. Being so thorough I was able to eliminate a lot of possible future problems. They both knew how I felt about the therapist and my daughter's care. They both had the opportunity to say that they were not interested in going to the extent that I was expecting. And I had a chance to review there knowledge and ways of doing things. I understood what I could expect from them and what there limitations were. The reaction from the Occupational Therapist totally caught me off guard. I said, "Hi. I am calling to let you know of my decision as to what therapist I had chose." I literally heard her holding her breath. When I asked, "Do you still have an opening for Crystal?" She let her breath out and shrieked, "Yes, I am so excited!" And she was too. She tells me all the time how much of a joy it is to work with Crystal. Her physical therapist had more of manly reaction, but in his sessions you can tell that he is really satisfied with working with her. They both run over their time not realizing time is up. And they both communicate with me on everything.
Now the whole team works together like clock work. They talk and teach each other. They are all so thorough and well informed with treatments. They all understand SMA for type 2 children and they never question me on decisions that I make. They are there to guide me when I may be going in the wrong direction with Crystal and they don't just say no, don't do that, they teach me and explain to me why in full detail. They all stay so updated with even her other therapies, and help with therapies that may assist in all areas. They give each other ideas and they all have the most wonderful way of bringing out the most efforts from Crystal.
When Crystal has new issues, I don't fret. I trust in my heart that when I direct it to the attention of her therapist, that it will be handled promptly and properly.
Dear Lord: Thank you for your attention to Crystal and for helping us find our way through the chaos in the long and complicated field of medicines. Thank you for giving me the strength to see to it that Crystal gets the best and has the best. I cherish each and every one of them and I know that you are the one responsible. Thank you. Amen.