Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 First, your daughter is very cute. (I also have a 6 year old named Ellie.) Now about school. If your main concern is about her immune system and germs then I would insist that the classroom maintain protocols that would help elevate your concerns. Such as, Antibacterial disinfectant to be used on all surfaces. Hand washing should occur often between every activity. All toys used in the classroom should be cleaned daily with a bleach solution to kill bacteria. If there are students attending school in her class with the flu you should have the option of not sending Ellie and she could receive homebound instruction for that week OR the other parents should be notified that they should not send their child to school if they have vomited or had a fever in the previous 24 hours. Now some of this may seem over the top, but I would ask for what ever makes you feel that your child will be safe. The other side of this is, if a child doesn’t build up an immunity to the everyday germs then how will they ever be able to fight off the big stuff. The other concern is the quality of life. What kind of life is it to be home every day and not experience what the rest of the world is doing. Personally I would rather my son go to school and be happy and socialize than I would to lock him up at home and know that he MIGHT live a little longer. Remember, as a parent you have a lot of POWER at the IEP meetings. Don’t be scared. Do try to think through all of your concerns. I would be happy to share with you the forms I made up when I met with my son’s school for the first time. Just let me know, Sue Ann Bube Parent to , 3 ½ with Mito President, UMDF Indiana Special Education Teacher with 12 years experience (and currently working on my Master’s degree) Public schools?? Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 First, your daughter is very cute. (I also have a 6 year old named Ellie.) Now about school. If your main concern is about her immune system and germs then I would insist that the classroom maintain protocols that would help elevate your concerns. Such as, Antibacterial disinfectant to be used on all surfaces. Hand washing should occur often between every activity. All toys used in the classroom should be cleaned daily with a bleach solution to kill bacteria. If there are students attending school in her class with the flu you should have the option of not sending Ellie and she could receive homebound instruction for that week OR the other parents should be notified that they should not send their child to school if they have vomited or had a fever in the previous 24 hours. Now some of this may seem over the top, but I would ask for what ever makes you feel that your child will be safe. The other side of this is, if a child doesn’t build up an immunity to the everyday germs then how will they ever be able to fight off the big stuff. The other concern is the quality of life. What kind of life is it to be home every day and not experience what the rest of the world is doing. Personally I would rather my son go to school and be happy and socialize than I would to lock him up at home and know that he MIGHT live a little longer. Remember, as a parent you have a lot of POWER at the IEP meetings. Don’t be scared. Do try to think through all of your concerns. I would be happy to share with you the forms I made up when I met with my son’s school for the first time. Just let me know, Sue Ann Bube Parent to , 3 ½ with Mito President, UMDF Indiana Special Education Teacher with 12 years experience (and currently working on my Master’s degree) Public schools?? Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 We actually just had the same conversation with Dr. Cohen, THIS WEEK. Grace regresses alot from any type of illness, and needs admission with ANY fever or vomiting. She is now 2 1/2 and we are just starting the pre school journey. His suggestion to us was to give it a shot, with ALOT of Purell and disinfecting wipes. He also suggested informing the school (he actually has a form letter, he will send to the school to help) from the beginning how dangerous it is for a mito kid to get sick, so they can let you know if there is anything going around. He stated at worst she cannot go, but we at least gave it a try. Grace also has a huge problem with heat intolerance. We must also have to require the school to put AC in her room and whatever else, within reason, they can. Also I will have to train the staff to help with her cooling apperal and how she reacts to heat, so they can be aware before anything bad happens. She will not be able to ride the bus, since I have heard there are none with air equipped. It is going to be hard on everybody to adjust to her needs. But she really needs the social experience and I really want her to do well. I'm not sure it will work, but I am glad we are going to try. Best wishes Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 hi kris, i have a 5 year old daughter, anna grace, dx with leighs. she attends public kindergarten...started with preschool last year attending 3 mornings a week. anna grace also has a twin brother, who is not affected, and a 7 year old brother. our anna grace is very social, although she is nonambulatory/nonverbal. so, we knew she would love being with other children. and we figured our boys were bringing home " viral bugs " and germs and passing them to her anyway. she does get the flu shot (not sure if it really helps). you could also request the school to let you know when they are having high levels of infections going around, so you could keep her home. hope this helps and feel free to write. bethany mom to brennan 7, palmer & anna grace (leighs) 5 > Hello to all, > > I hope this message finds everyone healthy and happy and in good holiday spirits! > > I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... > > We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). > > HELP!! Please let me know your thoughts...thank you so much in advance! > > Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Kris, our little girl Max went to kindergarten all of three days this year. As soon as school started she got sick. Bilateral pneumonia and chronic respiratory failure. This was not her first time to have pneumonia this year. The doctors strongly suggested for Max not to attend school during the winter. We thought about it for a long time and in the spirit of providing the best quality of life, we have made the decision for Max to stay home for the winter and be homeschooled. Her twin brother is attending school. We will revisit Max's situation in the spring. Hope this helps best regards, rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Dear Kris, I have experienced what you are and understand your dilemma completely. The ultimated decision is yours, but I will share my decision with you. My older daughter, Samya died 2 years ago at age 8 of leigh’s. She went undiagnosed all of her life until she died, they finally put it all together and came up with the brilliant possibility of leigh’s. You can read more on her website at www.samyahaddad.com I had my other daughter, Leanna tested right after Samya’s death and confirmed what I already knew in my heart. The virus that took Samya’s life was very minor, but it took away her life in 33 days. That is how fast this disease can kill and remember that we never knew she had this. She was in school since she was 3 , and treated like any normal kid and I never took any extreme precautions then with her health. I always have been a “germ” freak, a clean house freak and always made sure my girls were not around sick people because any sickness always took its toll on them. Of course, now with leanna I am even more paranoid. Honestly, according to the statistics, both my girls should have been dead by age 3 according to the specialist. Samya lived 8 and a half years, and Leanna is 7 and a half now. Both girls have had very serious viruses in thepast that logically should have taken their life then now that we know the disease and yet it did not. I believe, we can only protect our kids so much and what is meant to be will. I do believe in string precautions and I leave the rest to God. I had this dilemma after losing Samya with Leanna in school and even discussed home schooling with her doctor. We decided that in the end , we may add a few extra days to her life, but at the cost of quality. I know how serious a virus can be, I lived it once already. Leanna is an only child and that is hard enough and she LOVES school that I cannot take that away from her. What will happen will happen regardless and my goal now is to let her emjoy each day of her life. I do not take stupid risks, though. For example, she is now in public school with a full time Teacher student assistant. Her job is to take care of Leanna all day long because she falls a lot and had lots of needs. I have trained the TSA to wash Leanna’s hands (I provid the class with soap) all day long, before eating etc. She does a good job, and thus far we have been well. She keeps leanna away from sick kids, etc. She does all that I would do if I was her and she understands the seriousness of these precautions. Leanna is never allowed to run without a hand held. I also sent a letter home to all the parents in her class to explain to them that Leanna has a serious disease and if they send a sick child to school and expose Leanna, she could die. I figure if they know, they might think twice before they sneak a sick child to school. The rest I leave to God. I know how hard the decision is. As a mother, we want to protect our children so much, but at what cost? Samya lived a full 8 years and enjoyed life to its fullest. I am shooting for a long happy life for Leanna and I do my best. Ultimately, God will choose the length. Last Christmas. A horrible flu was going around Leanna’s school. I panicked and took her out the last 2 weeks before xmas vacation and she missed all the fun of the hilidays. Guess what happened? She got a sinus infection at home which came from her allergies and was not from someone else and had a serious crisis that lasted about 2 months. She could not walk, talk or urinate and recovered after 2 months, finally went back to school and had to relearn so much. That proved to me that I am doing the right thing and I want leanna to enjoy her life, no matter how long it is. I hope that helps. Good luck, and God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: Sue Ann Bube Sent: Thursday, December 02, 2004 9:30 AM To: Mito Subject: RE: Public schools?? First, your daughter is very cute. (I also have a 6 year old named Ellie.) Now about school. If your main concern is about her immune system and germs then I would insist that the classroom maintain protocols that would help elevate your concerns. Such as, Antibacterial disinfectant to be used on all surfaces. Hand washing should occur often between every activity. All toys used in the classroom should be cleaned daily with a bleach solution to kill bacteria. If there are students attending school in her class with the flu you should have the option of not sending Ellie and she could receive homebound instruction for that week OR the other parents should be notified that they should not send their child to school if they have vomited or had a fever in the previous 24 hours. Now some of this may seem over the top, but I would ask for what ever makes you feel that your child will be safe. The other side of this is, if a child doesn’t build up an immunity to the everyday germs then how will they ever be able to fight off the big stuff. The other concern is the quality of life. What kind of life is it to be home every day and not experience what the rest of the world is doing. Personally I would rather my son go to school and be happy and socialize than I would to lock him up at home and know that he MIGHT live a little longer. Remember, as a parent you have a lot of POWER at the IEP meetings. Don’t be scared. Do try to think through all of your concerns. I would be happy to share with you the forms I made up when I met with my son’s school for the first time. Just let me know, Sue Ann Bube Parent to , 3 ½ with Mito President, UMDF Indiana Special Education Teacher with 12 years experience (and currently working on my Master’s degree) Public schools?? Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 > Hi , We too went thru the school experience and getting everything adjusted for our children. First they must provide the AC on the bus and in the classroom as long as you have a prescription or letter from the Drs. Our daughter is driven in a mini van with that little school sign on the side. They contract with a transportation dept and they will provide it. Since we strive for our daughter to be as normal as possible we have it set that if the ambient temp is above 70 they must bus her... whether that be morning or afternoon. Typically she rides the regualr bus in in the morning then the afternoon when its hot they send the mini van for her. They also had to make sure she has her cool vest for any recess and they follow her temp even with that on.... aparently they have 3 recesses in all day kindergarten! She s in first grade now and pre school and kindergarten went surprisingly well. If your daughter qualifies for pre school services then she will have an IEP. If she already has one then you can ask for a new IEP meeting to add the things to it that you know she needs medically. If.. like our daughter.. she doesnt qualify for an IEP.. but has the medical needs then you can create a 504 plan to cover all of the needs. We include things that MAY happen even though its not daily even. By the way... it doesnt sound like many of you know of a product called Control III. We know of it because we have other children with trachs and are given this to clean everything with! It kills EVERYTHING including HIV. You can soak things in it.. or simply (as we do) spray it on everything and let it dry. Thats all you need to do. Since our children... three out of 4 all have immune issues and two have trachs our entire house gets done at least once a week. I simply go around and spray like mad... walls.. floors... furniture.. its not like bleach.. it doesnt hurt a thing just the germs! I know it is cheap and can be purchased on line or as we have our DME provides it for free. Hope this info helps. We also have protocol that I go into the classroom and use control three as I see fit (Im not asking the teachers to do it as then I dont know if its truly done or not and besides this way Im not asking more from them than I would do myself) and all children must use hand sanitizer in the classroom every two hours through the day. They simply use it every single time they line up. We did not have this for her pre school as I hadnt thought of it.. she was in and out of the hospital for illnesses every two weeks pretty much then. Last year she made it the entire year with only 5 illnesses.. thats saying a ton and the teachers and principle reported that the entire class had the least amount of absences in the school! They now have everyone doing this in the entire school! Its terrific! Kimberley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi Kris: Well first of all, have good communication between you and her teachers. I have a daughter, age 6, who still goes to special ed preschool. She was to be in kindergarden, but after 1 1/2 months of that we put her back in preschool. Long story for another time. Our daughter has surprisingly handle illness well these past couple of years. Leah weighs 36 lbs on a good day, too. Like when she doesn't fall ill and lose weight because of loss of appetite. Anyway Leah's teachers are very aware of our being cautious with illness. When any one has a cold even in her room, the teachers inform us. They are very good about washing hands and hygiene. The plus being in special ed preschool are the numbers are low, meaning there are a total of 10 kids including Leah. Vs. in kindergarden there were 21 kids. Leah's classroom was fairly self contained. They did venture out to music with the kindergarden class, but otherwise she wasn't really exposed to other children. We have it written in Leah's IEP that if the flu is going around school or any other "heavy" type of illness we are allowed to keep her home. So far we haven't had to do that. Leah has two older brother's that go to a different school. So we are having them do more hand washing during the school year and if they become sick they are stuck in their bedrooms upstairs away from their sister. Leah LOVES her preschool teachers and classmates. Now that she is back with them instead of the "other" big kids, she is all smiles and a happy little girl again. If you can send your child to preschool with lots of precautions and good, and I mean a good communication with your teachers, things should go well. Leah gets her therapy in the classroom, too. Speech, OT, PT. She has gym with special equipment. She is now learning to ride a trike with a helmet and she is soooo happy about that. Even her therapists will sense that Leah may be getting sick and inform us of what they were noticing. And most times they were right, Leah did become sick and we would keep her home. I would recommend sitting down with the teachers in a meeting and explain about mito in simple terms and what could happen if your child would be come ill. And why you need to take the precautions you need to. We did that with Leah's teachers and this has been our communication about illness for 4 years now. Good luck and I hope she goes to preschool and loves every second of it. Oh, because things are going so well these past couple of years, I have not worried about sending Leah to school at all. In fact I look at it as a joy and that she can do an average thing like other children are doing and that's going to school, sing songs, play with dolls and toys and make art projects. All adapted of course, but what a joy for her to experience this. Good luck and let us know how things go. Nerenhausen mom to Leah Kris & Matt Kovalcik wrote: Hello to all, I hope this message finds everyone healthy and happy and in good holiday spirits! I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been "tested" and has "qualified" for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). HELP!! Please let me know your thoughts...thank you so much in advance! Kris. Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi Kris, I would just like to encourage you to consider all of the options available to you, but you really don't have to do anything until the age of six in Ohio. We were already home educating before we knew our son had mito disorder, so we have continued on that path. We love the experience, but it is a challenge sometimes to get evaluations because most of the PT, OT, hearing, etc. are done through the public school system here in Bellefontaine. (We're just a hop down the road from you.) We love this lifestyle for the time being, and have home educated for seven years now. It has been a blessing for preventing illnesses, as Collin is rarely sick and has not had to be hospitalized for viruses for several years, though we were close a few months ago. It is just an option to consider, among many others. It isn't always easy, and it's not for everyone due to extraordinary circumstances, but it is enjoyable. Our children are thriving in every way, except Collin struggles academically to keep up. Socialization is not an issue, we have to actually turn things away to get academics done. Explore your options, and enjoy this pre- school age because it is a short journey before they are first graders, on to fifth graders and then teenagers! Blessings to you, Joni > Hello to all, > > I hope this message finds everyone healthy and happy and in good holiday spirits! > > I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... > > We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). > > HELP!! Please let me know your thoughts...thank you so much in advance! > > Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi Kris, I would just like to encourage you to consider all of the options available to you, but you really don't have to do anything until the age of six in Ohio. We were already home educating before we knew our son had mito disorder, so we have continued on that path. We love the experience, but it is a challenge sometimes to get evaluations because most of the PT, OT, hearing, etc. are done through the public school system here in Bellefontaine. (We're just a hop down the road from you.) We love this lifestyle for the time being, and have home educated for seven years now. It has been a blessing for preventing illnesses, as Collin is rarely sick and has not had to be hospitalized for viruses for several years, though we were close a few months ago. It is just an option to consider, among many others. It isn't always easy, and it's not for everyone due to extraordinary circumstances, but it is enjoyable. Our children are thriving in every way, except Collin struggles academically to keep up. Socialization is not an issue, we have to actually turn things away to get academics done. Explore your options, and enjoy this pre- school age because it is a short journey before they are first graders, on to fifth graders and then teenagers! Blessings to you, Joni > Hello to all, > > I hope this message finds everyone healthy and happy and in good holiday spirits! > > I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway... > > We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been " tested " and has " qualified " for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions). > > HELP!! Please let me know your thoughts...thank you so much in advance! > > Kris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Great advice for all of us going through the same thing. THANKS! Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Great advice for all of us going through the same thing. THANKS! Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hello, I just wanted to thank you all for responding to my questions/concerns about public schools and Mito kiddos. We have decided to put Ellie in the special needs pre-school next fall, along with her twin brother Jimmy. We will have all sorts of requirements put into the IEP. The teachers and staff seem to really want to work with us and even though they don't fully understand Mito or all of its quirks, they are willing to learn. My husband's mother is a teacher in the district and is well-known and liked so I think they are doing a lot of this for her, too. Know what I mean? There is a lot of good history between "Mimi Dude" and the pre-school administrator, so that helps. So, we'll see. We want to wait until the fall so that they can stay in the pre-school (three days a week) they are in now (home-based with a WONDERFUL woman) through the summer. If we start public pre-school now, they are mine for the summer which would be hard as I work two days a week! I am rambling and I'm sorry! But again, thank you all for your input. I truly appreciate it. I hope the holiday season is treating you all well despite the daily joys and sorrows we each face. God Bless, Kris. Re: Public schools?? Hi Kris, I would just like to encourage you to consider all of the optionsavailable to you, but you really don't have to do anything until the age of six in Ohio. We were already home educating before we knew our son had mito disorder, so we have continued on that path. We love the experience, but it is a challenge sometimes to get evaluations because most of the PT, OT, hearing, etc. are done through the public school system here in Bellefontaine. (We're just a hop down the road from you.) We love this lifestyle for the time being, and have home educated for seven years now. It has been a blessing for preventing illnesses, as Collin is rarely sick and has not had to be hospitalized for viruses for several years, though we were close a few months ago. It is just an option to consider, among many others.It isn't always easy, and it's not for everyone due to extraordinarycircumstances, but it is enjoyable. Our children are thriving in every way, except Collin struggles academically to keep up. Socialization is not an issue, we have to actually turn things away to get academics done. Explore your options, and enjoy this pre-school age because it is a short journey before they are first graders, on to fifth graders and then teenagers! Blessings to you, Joni> Hello to all,> > I hope this message finds everyone healthy and happy and in good holiday spirits!> > I am looking for some feedback in regards to sending Mito kids to public schools. A little background info.....Ellie, our 3 year old daughter, has Complex IV and most symptoms of Leighs (diagnosed via muscle biopsy in October 2003). We see Dr. Bruce Cohen (CCF), and are scheduled to see Dr. Shoffner on January 4th. Ellie has several brain lesions - the worst being on her nerve cord which controls her balance. She uses a Crocodile reverse walker or crawls to get around. She is very small - about 23 pounds (on a good day!) and only 31 inches (Her twin brother, unaffected, is 33 pounds and 37 inches!). Her fine motor skills are good, speech is good (when she is sick she really stutters and has trouble speaking), and she is very smart! She takes Carnitor, liquid Riboflavin, CoQ10 and a host of supplements. Anyway...> > We have inquired with our local school system (Olentangy schools in , OH) about pre-school. She has been "tested" and has "qualified" for special needs pre-school four 1/2 days per week. I loved the teachers, the classrooms, etc., but am very nervous about putting her in with other kids who could potentially make her sick. On one hand we want to keep her home and shelter her from any illness, but on the other, can we realistically keep her home forever? How have you all handled this? What are the pros and cons in your eyes? I would feel SOSOSO guilty if I sent her to school and she came home with a horrible virus and she detiorated (Cohen says any stress, mainly illness, will cause more lesions).> > HELP!! Please let me know your thoughts...thank you so much in advance!> > Kris.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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