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Monday, February 9, 2015

Struggles to Triumphs

Brielle has had some struggles lately. For the last 3ish months she has been fighting therapy. Kicking, screaming, hitting, sassy mouth! Josh and myself have been at a total loss on what to do with her. We again reached out to her teachers who have helped greatly! We also started some things at home, A stop and go light with clothes pins and their names, Try to stay on green all day. They are not happy when they get moved to yellow and work very hard to stay "Green" all day! We have also started "Chore" Charts for them both. Its nothing major (pick up toys, do "homework", help set table, do good in therapy, get dressed etc. I went and got a "treasure chest" and if they complete x amount of chores for the day they get a special prize. Brielle has also been pretty rude to other people, not just her therapists but they are the brunt of her anger. She says things like "Go away" "Don't talk to me" "Stop looking at me" "Your not my mom don't talk to me" "Don't touch me" "Im grumpy and I am sassy" The list just goes on and on! She is definitely not raised that way nor do we talk like that so I am not sure where this is coming from. I struggled for many months as to if this is indeed typical 4 year old behavior or if its something "deeper." I turned to my CP support group and had several moms tell me that PVL, which Brielle has on the right side of her brain, can contribute to behavioral problems. They also had said that after seeking medical help, it was concluded that their child needs to "control" their environment because they have little control over their bodies. This one was a definite AH HA for me! Brielle is CONSTANTLY controlling everything she encounters! From her little sister, to friends at school, to activities we do, to even mom and dad. She is most definitely trying to control therapy and if its not her idea she aint doing it! Another AH HA for me was at my last and final straw after an emotional phone call with her teacher a week ago, I sat her down and said what is it? What don't you like? Why do you fight therapy SO bad? Therapy is NOT going away for her. Therapy will, unfortunately, be this childs life forever. She said to me "Mom I don't like Lisa." I said "How come? Lisa loves you so much and wants to help make your legs strong. She wants to do such fun stuff with you!" She said "Lisa Pokes me. Lisa hurts me." AH HA! Back story. In December we had a new PT who we had had only 5 weeks. Brielle was doing all of the above, fighting, and wouldn't do much work for him. I was SO excited about this PT because he is older "WISER!" and I felt his knowledge about her was spot on and he had some great ideas for her! Brielle has PT, Botox, OT and horse, all in one day. Josh ended up coming with me to this one because it was so much in one day and we could tag team her. Usually we just go one of us a day. The PT was trying to get Brielle to work and she kept fighting and running away. Josh and myself would try to redirect her back to therapy. The PT did not like this and kept making the comment that we need to let them build a relationship. That isn't going to work. He already set the tone day 1 when he let her get away with the behavior. If she knows you wont make her work, that's what shes going to do (back to the control). He suggested that we waster a whole PT session (Mind you they deny PT more than OT so we fight a lot to get PT approved at all times!!) and sit around a table to build a "relationship". Ya I wasn't into that at all. Then he said to me that I need to stop looking at how she "looks" and accept the fact that she has a disability. I was in complete shock. This all came from me expressing my concern with her tip toe walking. When she is tip toe walking is causing a whole another array of problems for her. Toes hurt in orthotics, she twists her body causing ankle and knee pain, and also hamstring tighting right up that cause muscle spasms in her legs. I was so shocked because I felt, wait a minute. This is YOUR job to HELP her get back down to a flat foot! I HAVE SEEN HER FLAT FOOTED! It CAN be done! I also tried to tell him that she responds very well when her Birth to 3 PT would stretch her and he told me that stretching was not a good idea because then when she isn't being stretched the muscle would tighten back up. WHAT? WHAT?? HUH? I was completely flabbergasted by the WHOLE session as a whole. The last thing he said to me was that my daughter has CP and I need to stop focusing on how she looks. No Im not focusing on how she "looks" Im focusing on giving her the BEST future she could possibly HAVE. I am a FIRM believer that therapy early on in life will get the best results. I walked away from him in complete shock and tears. Our OT ran into me in the halls and could tell what was going on immediately. I explained to her in short and she immediately fixed it, and we no longer see him. Lisa ended up coming into the room with us for botox, which she usually doesn't do but because I was upset and Brielle was upset she came in with stickers and tried to help up soothe the situation. sooooo needless to say Brielle thinks that Lisa will "poke" her and is fighting any and all therapy with her. I explained to her that she will NEVER EVER poke her and she does not need to worry. I also explained this to lisa and she did the same AH HA! It hurts my heart to no end that this child has to even go thru any of this! She shouldn't have to hear the word "Doctor" and have anxiety. Even if she isn't going to the doctor, mom, dad or sister, she is really concerned and doesn't want us to go. Its truly sad. So This past Thursday, after talking to her teacher, I went to therapy with my head high and ready for behavioral changes! My aunt came with me for moral support incase I needed to take that little fighter out of there. We had decided that if she was a stinker for Ms. lisa she would not be able to ride her beloved horse, Maverick. She did GREAT. The last 3 minutes were rough but Lisa said she did improve HUGELY so instead of taking it all away, we took away her ability to "hold" Maverick afterwards. she looks forward to this, but did not get all 5 of her smiley faces needed and.....SHE DIDNT EVEN FIGHT IT! Lisa also took me aside before horse, during her little fit, and said OT and PT just don't feel comfortable billing us for all these sessions when she does NOTHING for an hour and 15 minutes. I 110% agreed and it has been discussed between Josh and I. She asked if we wanted to take a break or what we would like to do. After Horse Brielle asked if we were doing PT. I just tough loved her and said Well Ms Diane doesn't want to play if your going to talk sassy and fight. But if youd like to have and play and be nice we can go. She got alittle upset and said she would be good. I told her one and done. Do good or we don't come back. SHE DID AMAZING!!!!!!! It was SO nice to be able to sit back and watch her giggle and smile and have fun while getting therapy! I really hope this behavior continues!!! I have an appointment with a neuropsychologist in March to see her thoughts as well. Slow and steady wins the race! Another hurdle her teacher wanted addressed was leaving her beloved blanket at home during school. She always leaves it in her backpack and in her locker during school so Josh and I didn't really see the big deal but after thinking more about it, shes almost 5 and doesn't need to drag that around. Her teacher send home alittle "card" with a pic of Brielle and beloved blankie and a cute little saying. Brielle got this card from us if she left without the blanket and then at school she got to turn it in for a chance to take a friend on a ride on the bike! She was so ready to do it this weekend, we had started working on it, she can have it in the car but needs to stay in the car. She got up and was so excited to be a big girl and do this! I was jumping up and down and singing made up songs about it and she was so excited. 2 minutes before the bus came water works turned on and a huge change of heart. I debated but thought nope, control. Stick to your guns and put her on the bus regardless. I had to carry her out kicking and screaming but from what I heard, it did not last long, and she was ALL smiles when she got home for being a big girl! Mom works next school day, so its all on dads plate to keep it rolling :) Brielle played in a Basketball camp in Freedom this past Saturday. She LOVED IT!!! Her idol (AKA Auntie Kaila) Came to cheer her on from the bleachers. Brielle cheers auntie Kaila on 1-2x a week so you could see how "cool" she thought she was being the one on the court! She has another one Feb 14th and 28th. She is definitely our little sports girl!!