Running head: SPECIAL EDUCATION INDIVIDUAL INTERVIEW

Special Education Individual Interview Autumn B. Combs Samford University

SPECIAL EDUCATION INDIVIDUAL INTERVIEW

Abstract This is an interview of a mother whose daughter was born with a mitochondrial disorder. In the interview we sat down and discussed the situation. Per my questioning, the mother opened up about her life and the life of her child. The interview allows a glimpse at some of the questions that still linger for this family and their ability to find the positive in every situation.

SPECIAL EDUCATION INDIVIDUAL INTERVIEW

Special Education Individual Interview I was introduced to Mrs. B through the school that I work at. Mrs. B has a daughter that was born with a mitochondrial disorder. This interview is about not only the child and the disorder, but also about the situations faced by the family. The interview offers a glimpse into their life and what they experience. When Anne was born she was a premature baby. She weighed four pounds at birth. Because of both of these facts, Anne had to stay in the hospital for a few days to make sure that everything was ok. She had to have a weigh in every day to check that she was gaining weight, but Anne did not want to nurse and it took a while for her to gain any weight at all. She had failed every hearing screening that was given to her. There was also unidentifiable white matter on her brain. Because of her symptoms, Anne was diagnosed with CMV which was a very sad diagnosis for the family and for mom because she would have been the cause of Anne having CMV. During the second day at the hospital, Mrs. B was holding Anne when her cellphone went off. The child did not react at all to the noise. This is the moment when Mrs. B knew that something was wrong. Within two weeks they had the official diagnosis that Anne was deaf. Within four weeks they had her fitted and equipped with hearing aids. This time period was difficult for the family because there were routines that they had to follow every day in order to enhance her hearing. One of these tasks included standing behind the baby and shaking a can of uncooked beans for as long and as loud as she could until Anne would finally make some effort to turn at the sound. Mrs. B said that this was very hard for them. They watched as their child who was born deaf struggled to make the hearing aids work, but they did not seem to

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help. She had the hearing aids for eleven months before they were able to get her tested to prove that the hearing aids were not helping or having any effect on her. If the test could prove that the hearing aids were useless in Annes situation, then she would be eligible for cochlear implants. After this testing she was approved for the implant surgery but they only performed the operation on one of her ears. Again, life had offered a trying time for the family. They knew that their baby was completely deaf and needed bilateral implants. They fought with the doctors about putting in the second implant. They finally had to resort to threatening to sue the doctors if they would not go ahead with the second implant. Finally, the situation was resolved and within six months of having the first cochlear implant surgery, baby Anne had her second cochlear implant surgery. Because the two surgeries were performed within six months of each other, she is considered as having bilateral cochlear implants. During the first surgery for her cochlear implant in Atlanta, Anne had a muscle biopsy. She also had a spinal tap during this time. Both of these tests were at the recommendation of their pediatrician who was not comfortable with the CMV diagnosis. After the spinal tap, Anne had a stroke and was paralyzed for twenty-four hours. She spent four days in the hospital. After these tests she was re-diagnosed with having a mitochondrial disorder. With this disorder her mitochondria are affected and do not produce the adequate amount of ATP which accounts for her low muscle tone. It was also discovered that she had a metabolic problem that caused her metabolic resting rate to be too low. This also is to blame for some of the low muscle tone and low amounts of energy that Anne now has. In order to help with this she is given corn starch milk two times a day that has enzymes that boost her ATP production.

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When asked about the disorders label, Mrs. B clearly knew that it is just a disorder that Anne has. She said that there is advanced technology now that can diagnose on a cellular level. There are seven types of mitochondrial diseases that have been recently discovered and named. Anne recently had a test to discover which disorder she has specifically. With a new, more precise diagnosis the family is hopeful that they will find out more about the disorder and ways that they can help Anne. They could also have Anne tested to figure out what went wrong genetically. In this test they would be able to find out where the mitochondrial disorder came from within the family. Mrs. B said that she and her husband decided not to have this test done because they did not see the point. They did not want to know where it had come from because they did not want any sort of blame put on anybody. They also knew that because Anne has the disorder, there is a twenty-five percent chance that all of their children after Anne would also have the disorder. This genetic testing was not worth the money for this family because they knew that they were not going to take the chance and try for another child. Anne had many opportunities available to her in Birmingham to receive services. They ended up using Alabama Institute for the Deaf and Blind but the family felt that they were not very deaf oriented so they also received services from the Bell Center. Anne was provided with OT sensory services. She would not take a bottle so the OT worked with her on this. Anne almost had to be fed by a tube because she was not eating. Mrs. B had to sit patiently with her every hour and work with her until she would finish one to two ounces of her milk. PT is currently helping with low muscle tone at Childrens hospital and the school that she attends. They are currently happy with the help that she receives and are thankful for all the resources that they were able to use when she was younger.

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Anne is like a typical child. She wakes up with the sun. She gets dressed, fixes her hair, and then puts on her cochlear pieces. She then has her first round of what mom calls her mitochondria cocktail which consists of five syringes of enzyme containing milk that Anne must drink. She then eats her breakfast, heads to school for about ten hours (her mother is a teacher and must stay late), and finally goes home to homework. She has her shower which is also the time that she removes the cochlear devices and plugs them in to be recharged. Within ten minutes of removing these devices she falls asleep for the night. When asked what kind of advice she would give to other families who are dealing with similar problems, she replied that she would tell them that they must keep the hearing aids on during the time they are supposed to at the beginning. She emphasized this because even though it does not seem like any progress is being made during that time, pathways are being formed from the ears to the brain that were not there to begin with. The longer you keep the hearing aids on the more your allowing those pathways to be made. The hearing aids are allowing the smallest decimals of sound to come through and this will help when the cochlear implants are activated. They will be able to build faster and stronger pathways. Another piece of advice that she had to parents was to keep asking questions. At the beginning they almost stayed with the CMV diagnosis which is worse than her current diagnosis. She said that she would tell families not to give up on the diagnosis because there are always new tests that can tell them more and more information. She said that the more information you can get, the better. This motto shines through while talking to her of her daughters disorder. Mrs. B is very knowledgeable when it comes to the disease and exactly how it effects Anne.

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Finally, to end the interview, Mrs. B was asked what the most positive outcome of this diagnosis has been. She thought for a minute and said that there are so many great things that have come from it. She said that it has made her a better teacher and that now she is more understanding. She now sees that everyone has special needs not just children who are labeled special needs. She said that this situation has also made her marriage better. Her husband really had to step up when Anne was born which is something that she was afraid would not necessarily happen. Since she is a teacher and nurturing person, she thought she would be the primary caregiver in the house but he has increased his activity and she is thankful for that. Finally, she talked about the advice that she is able to give to people now when she hears that they have a child with this disorder. Because she is so informed she has been able to help with others journey through the process and this is something that she is grateful for. The interview that I had with Mrs. B was amazing. The disorder that Anne has is one that I have never heard of before so it was interesting to hear so much about it and the effects of it. It was also interesting to get a small glimpse of their lives and what they deal with and have dealt with because of Anne. My favorite part of the interview was when Mrs. B listed the positive things that have come out of this. She was not hesitant to say that there were many things and she was sincere. It was encouraging for me to see her great attitude about it. I am glad that I had this interview with her because it has introduced me to a new disorder that I did not know about, and it allowed me to see the happiness in what some would consider a sad situation.