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Thursday, March 27, 2014

Just Because You Are Special Needs

We went to the only dentist in town that could deal with Teale's issues around denistry. They are connected to the local hospital, so the dentists can get into the operating rooms to do procedures if needed. Teale's behaviors were tough in the beginning when we saw the dentist. Often there was a team of people jumping through hoops to keep her cooperating. We would bring her signing skills coach to use sign language to help Teale, both Mark and I would go, we would bring a video and we would bribe her, whatever it took, we would do. When there were scheduled operations with orthopedists or her hand surgeon or other times when Teale was knocked out on anesthesia to get procedures done, I would coordinate all medical specialists to also get what they needed. There were many times a leg brace would be made, x-rays of her teeth would be taken, while a blood draw was being done for her medicine levels along with an EEG reading getting compleated. I'm a good multitasker, so this kind of coordination was easy for me. After all, it made Teale's life and our life easier to get much done at once. Teale has had hand surgery at least twice and a major leg surgery at least once, to fix the pulling her cerebral palsy was doing to her right foot. She has had ear tubes several times because of chronic ear infections and the hope it would help her hearing improve. Her tonsils and adenoids were removed because of chronic strep throat and sleep apnea. Teale has been sedated to do botox on her hand effected by CP. We have had her hospitalized for her bipolar mania in the children's psychiatric ward. Teale has had two long term (2 weeks each) EEG monitoring, to try and figure out her severe seizure disorder. Neither time was successful, but both were very difficult on our family, as either Mark or I had to be with her at all times. Teale used to wear a hand brace to loosen and stretch the muscles in her right hand. Right now her right arm is so much smaller than her left arm, it makes me wonder if another surgery will be needed? There is always much we could be doing. There are doctors to see, specialists to work with, therapies to try and cures to research. My mind is rarely quiet, I'm always thinking about how to improve Teale's life. So when we started dentistry, I knew there were many reasons to go where we did. There is a large population of special needs people who use this facility, so they are used to kids like mine. I built a strong relationship with a dentist there who saw Teale far more than the average patient so he could build trust with her. We worked together as a team and had many, many small successes. Teale is legally blind, she has no vision on the right sides of both eyes, this causes depth perception issues. While she was in Summer program with her school district at the time, the class spent half days with typical kids at a YMCA camp. Teale loved to swim the most, she was out of the pool and going to lay down on her towel next to a peer when she misjudged how far away the towel was. She slammed her permanent front tooth into the concrete, breaking 2/3rds of it off. Taking her immediately to the dentist that had worked with Teale, he was able to bond the tooth without sedatives. This huge accomplishment sparked many things in me. First of all, her overbite was so bad that her teeth were not in her lips being protected. Secondly, it proved to me that contrary to the beliefs of the orthodontist, who were tied to this dental facility, Teale may be able to handle getting orthodontic care to correct her overbite. I started pushing the thought with her dentist, taking it slowly and proposing just a night guard to start. My son's teeth had moved quite a bit with a night guard so I was hopeful we could get some results with Teale's teeth. After months of working through this, they agreed! Since she was scheduled for a procedure under anesthesia anyway, the orthodontics department and dentistry just piggybacked and did what they needed to with Teale under sedation. We were then in charge of the night guard, which was tough to do, but we did it. Months of work did not bring the results we had hoped for though. Teale had been decent about using the night guard, but often came to me in the middle of the night to remove it. Fighting her in my exhaustion, in the middle of the night just wasn't in me. She wasn't getting enough time in the night guard to make a difference and the months turned to years. The plus during this time was her cooperation at the orthodontist appointments. I no longer took a team of helpers and in general Teale did pretty well. I was hopeful she had proven herself and they would soon put braces on her teeth. A committee met to discuss Teale's case and we were called back for the outcome of that meeting. Fully expecting it to be positive, I went alone to the appointment. I must have been naive, because I was sure they were just going to tell us that they planned on starting the braces. Instead they told me the opposite, that they did not think she would be cooperative and therefore they were going to remove the night guard bands and send us on our way.  Teale's needs were too great and they felt if they removed her teeth to fix her bite and then could not get her cooperation, she would just have gaps of empty space and that would be worse. I BAWLED, literally, I was uncontrolable. Snot and tears going down my face, I was heartbroken and could not believe my ears. We had worked so hard, we had gotten Teale to such a comfortable place in the orthodontic and dentists chairs. She only needed me there to keep her on track, sure it wasn't perfect, but heck, every child has their moments. Teale sat in the chair with me sobbing, trying not to sob, trying to be eloquent in my pleas to just try! I was seriously feeling broken, I fight for so much for my daughter. I had to fight for the right school placement for years, I was worn, I was so sick of fighting. I remember saying to the team who told me they were not going to put braces on Teale ~ "I find it so sad that just because she is special needs, she doesn't get the chance to look the best she can." But then it hit me, fight Ellie, fight that she has already broken her tooth (2x actually, b/c the semi permanent tooth was replaced a second time when it broke) and it is unsafe to have her teeth not covered by her lips! I started taking the safety approach, I pushed and I cried and I stated facts, like her depth perception issues. All the while Teale sat in that chair, worried about me because I was crying. One of the sweetest things she has ever said was that day. I was still very emotional, trying to absorb the fact that my daughter would always have this horrible overbite. I had not hit the next stage of my grief where I would start to think logically and fight for Teale's rights. I was just overwhelmingly sad and Teale said to the team in the room as I sobbed ~ "She needs to go for a walk." There is some background to explain about that statement, that might help you understand how sweet it was... Teale had been upset in school the week before and I was called. She is not a crier, but she was crying, so not knowing what else to do, they offered to Teale to call me on the phone. I immediately went to her school and offered Teale to take a walk with me, so I could try to tweak out the reason she was so upset. Teale went back in her limited experiences in dealing with a crying person and what she remembered was my taking her for a walk. Her statement made me cry more, I was just so touched and so proud of her! It showed me that she was worth this fight, I wasn't going to give up! So I begged the team to take it back to committee and present the idea of doing something for my daughter. I suggested a minimal fix, don't remove any teeth, just get her bite the best you can without removing teeth. I suggested only putting braces on the top teeth, so we could at least fix her overbite. Months later I got the call, they had agreed to try! On October 22, 2013 Teale had braces put on her top teeth. She was PERFECT! Her cooperation has been exemplary at every visit. Just last week the orthodontist suggested the idea of taking her care to a higher level. We are now considering putting braces on her bottom teeth also. We may even consider removing the teeth that would make her bite even better? Whatever happens in the future, I just know I will never give up on Teale, she has proven people wrong time and time again and she is worth the fight! 

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