This blog is kind of a continuation of the previous one I did the other day, sorry this maybe alittle boring to some, hang in there with me. I am hoping to suggest some valuable ideas, information, and the links of a couple I have. Starting from the beginning, when our children are still babies, you will want to have the contact names for your local health department, the county where I am in they call it Health and Human Services. They will be able to direct you to a Birth to 3 Program in your county, they will also help you in the area of funding if your child meets the state requirements. Most counties have a Family Support Program, Katie Beckett Program, CLTS Waivers, and some other programs that will help for your baby/child again depending on age and if the meet the eligibility requirements. Make sure you keep informed on these things for the sake of your child, some of these children will need a lifetime of special care and services. We need to advocate for these kiddos!
One valuable contact is CSHCN (Children with Special Health Care Needs), if you google this, you should be able to find the contact for your area (in Wisconsin) they will be able to help you with finding different kinds of information. They also have a whole library of books,etc you can borrow from. Children's Hospital of Wisconsin may also be a good link to have, I believe it is http://www.chw.com/. There is also The Center for the Blind and Visually Impaired, you can google them and find a local contact for your area, they have been beneficial in testing Meggie's vision and making suggestions for how to work on improving her vision. Focus Families has been a good resource on finding out more about ONH / SOD ONH, you can visit their site at http://www.focusfamilies.org/, Dr. Borchart and his staff have studied ONH /SOD ONH over the years, and have many informative articles and studies posted on the site http://www.onesmallvoicefoundation.com/, Family Voices of Wisconsin is a resource you can use to find out about meetings and trainings, as well as if you need an advocate for your child, http://www.fvofwi.org/. ONH Consulting is run by Christopher Sabine, the President and Founder, who was born with ONH himself, and can consult with you or offer his services for IEP meetings, and school related issues, http://www.onhconsulting.com/ . The Child Neurology Foundation is a newer site to me, but very interesting to me, http://www.childneurologfoundation.org/.
There is just another three websites I would like to share that maybe fun (and informative), the first one is Possibility Playground in Port Washington, if you have not been there, this is a must for your children. This all inclusive playground is sure to bring a smile to your children's faces, http://www.posibilityplayground.org/. PALS stands for Parents as Leaders, this is a training group parents of children with special needs children can learn and grow, and become a better advocate for your child, www.waisman.wisc.edu/pals, and the last one is actually the magazine, Exceptional Parent, this is very informative for parents, about multiple topics, http://www.eparent.com/
I hope some of you have found this helpful, together we can learn and help make things better for more families of children with special needs.
Showing posts with label Childhood blindness. Show all posts
Showing posts with label Childhood blindness. Show all posts
Wednesday, March 16, 2011
Friday, March 19, 2010
Ready, Set, Go....
March is the time of year we usually start with our marathon appointments, as long as we are not in the middle of a blizzard, and as long as Meggie's health is good. Over the years I have learned to try and set appointments up for spring and fall, to keep them grouped closely together, and then we can enjoy our summer break with the other kids and dad.
Starting with the physiatrist(or the equipment specialist as I call him), the orthopedic dr., x-ray dept., the neurologist, the gastroenterologist, the endocrinologist, the lab dept., the pediatrician, and your staff, not to mention therapies, OT,PT, eye dr., and the dentist. Please, Please forgive me if I missed anyone, we think the world of all the special people who devote hours upon hours of their lives to care for our children. The things I have learned and the information you have passed on to me is invaluable. I have come to appreciate all your knowledge and skills, you so passionately demonstrate,and I refer to you as Meggie's careteam, you make our lives more manageable. So many parents that have children with special needs have big loads to h
andle, and things may seem overwhelming at times. All I can say (with all my heart) is THANK YOU, THANK YOU, THANK YOU!!! 
So as you can imagine, we need to be a little creative with the schedule at times. If there are books we can read or picture cards to work on with Meggie, those are things we can do while waiting in a room, but if you ask Meggie, she may rather play with her crinkly mylar paper, she finds it absolutely fascinating. If none is available, the exam table paper may do.
Though there are several things to watch for with ONH SOD, you can find out more by checking out more detailed information at the link below,www.One Small Voice Foundation or check www.MAGIC Foundation link, they give yearly seminars for parents and families to come together and listen to doctors, nurses, therapists, and researcher speak on ONH SOD and various other syndromes/conditions that children may have. Education is key, and can make this journey with these special children a much better experience for all if we are more prepared and equipped to face the seemingly numerous challenges we may or may not encounter. Knowing the needed necessary testing with hormone deficiencies, glucose levels, developmental delays, mid line brain malformations, etc. and the needed treatment will be of great benefit if the time comes when you may be need it. If a Child has ONH the severity may range greatly, all the way from light perception to visually impaired, in one or both eyes. We need to keep in mind that if the child has ONH they are at risk for any of the abnormalities that come with SOD. ONH is the leading cause for childhood blindness, and it is on the rise, being aware of the signs and symptoms may lead to earlier treatment and more effective results for the child. My goal is to share our story and educate others in this quest for helping our children lead better quality lives, with or without Optic Nerve Hypoplasia Septo-Optic Dysplagia, ONH SOD (or DeMoiers syndrome), all are one in the same. An important note to parents is ONH is the leading cause for childhood blindness and we all can join in being educated in this area.
With all that said, our children hold great value in this world and they are here for reasons that may be known to us, and some reasons that may be beyond our understanding.
Enjoy the little things in life for one day you may look back and realize they were the big things.
~Robert Brault
Starting with the physiatrist(or the equipment specialist as I call him), the orthopedic dr., x-ray dept., the neurologist, the gastroenterologist, the endocrinologist, the lab dept., the pediatrician, and your staff, not to mention therapies, OT,PT, eye dr., and the dentist. Please, Please forgive me if I missed anyone, we think the world of all the special people who devote hours upon hours of their lives to care for our children. The things I have learned and the information you have passed on to me is invaluable. I have come to appreciate all your knowledge and skills, you so passionately demonstrate,and I refer to you as Meggie's careteam, you make our lives more manageable. So many parents that have children with special needs have big loads to h
andle, and things may seem overwhelming at times. All I can say (with all my heart) is THANK YOU, THANK YOU, THANK YOU!!! 
So as you can imagine, we need to be a little creative with the schedule at times. If there are books we can read or picture cards to work on with Meggie, those are things we can do while waiting in a room, but if you ask Meggie, she may rather play with her crinkly mylar paper, she finds it absolutely fascinating. If none is available, the exam table paper may do.
Though there are several things to watch for with ONH SOD, you can find out more by checking out more detailed information at the link below,www.One Small Voice Foundation or check www.MAGIC Foundation link, they give yearly seminars for parents and families to come together and listen to doctors, nurses, therapists, and researcher speak on ONH SOD and various other syndromes/conditions that children may have. Education is key, and can make this journey with these special children a much better experience for all if we are more prepared and equipped to face the seemingly numerous challenges we may or may not encounter. Knowing the needed necessary testing with hormone deficiencies, glucose levels, developmental delays, mid line brain malformations, etc. and the needed treatment will be of great benefit if the time comes when you may be need it. If a Child has ONH the severity may range greatly, all the way from light perception to visually impaired, in one or both eyes. We need to keep in mind that if the child has ONH they are at risk for any of the abnormalities that come with SOD. ONH is the leading cause for childhood blindness, and it is on the rise, being aware of the signs and symptoms may lead to earlier treatment and more effective results for the child. My goal is to share our story and educate others in this quest for helping our children lead better quality lives, with or without Optic Nerve Hypoplasia Septo-Optic Dysplagia, ONH SOD (or DeMoiers syndrome), all are one in the same. An important note to parents is ONH is the leading cause for childhood blindness and we all can join in being educated in this area.
With all that said, our children hold great value in this world and they are here for reasons that may be known to us, and some reasons that may be beyond our understanding.
Enjoy the little things in life for one day you may look back and realize they were the big things.
~Robert Brault
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