I think if you could put up equipment reviews for different items (wheel chairs, helmets, cribs, etc) or maybe a how to section (we had to pad our sons crib so he wouldn't self injure). It would have been very useful information to share as the equipment changes constantly while they grow. Then people could post any issues and rate the equipment if they have used it. We had a wheel chair stroller type that our son was in and it was terrible. We used a everyday stroller instead for the travel convieniences it offered. Maybe you could get some manufacturers out there to give the odd piece of equipment to give away on the site. Maybe there could be a post page for people willing to donate equipment to others in need. Diapers everyone needs diapers...coupons?
It would be great if financial resources/help could be addressed. After the birth of my son, and realizing that his disability would force me to quit my job to care for him, our lives have completely changed. We ultimately wound up on Medicaid because no one else would insure his "pre-existing condition", we lost most everything. And now we find ourselves needing equipment, or wanting to participate in our therapies of choice and insurance is denying what we need. They tell you there are orgnaizations to help, yet many of those organizations find a way to say no too. The government says there are budget cuts so learn to make your own therapy equipment out of a "sheet". There isn't the kind of help that we need for parents like us.
I agree do a show on raising three children with special needs and the two other children are not severe enough to get any help , my daughter struggles every day, she just came in the door she had to work 2 to 12 today 10 hours on her feet for 8 dollars an hour, she won;t get to twork again since she works at the college she attends, she won;t get to work any more till school starts back, and then only after classes which is not much since she is a music major, right now her trumpet has broken and she cannot get it repaired and she bought it at a pawn shop and it is beyond repair after 3 years she will be a senior in college next year and at 31 thats pretty good, she will be a music teacher and band director, but not without that trumpet, but she can;t do in debt for a trumpet because it would mean food money away from her children, Brandon goes to a doctor out of town and gas money eats us up, we all live together my husband and i draw social security, i am blind in my right eye and an operation would fix that but i can;t afford the copays because i spend what little i have to help my daughter and grandchildren, my husbands check pays the rent and almost pays the utilities, its hard Brandon is supposed to be on pediasure because of his weight childrens rehab services stopped getting it for him, we cannot afford it, he is 10 and weighs only 57 pounds, Brittni needs braces so she can get her teeth fixed, she cannot close her mouth, its always open, James needs the hole in his ear fixed, but medicaid won;t pay for this , they say its cosmetic even though Brittni cannot close her mouth all the way, they still say cosmetic, where;s the help when us poor folk need it? thank god Brandon doesn;t need a wheel chair or anything because we could not afford it, he needs the insoles in his shoes to help his feet but the ones he had were too small any more and childrens rehab says no more money, so what are we to do? What about us folks who can;t go trampsing around the world for mediine and cures, / what about those of us who cant afford all the best doctors? There are folks out there that are inbetween so to speak, make too much for the services and too little to pay for them ourselves. What about us? who helps us/
Just found the site and no where near through absorbing it :) This is an amazing idea and great start.
I love the dads being involved and its so encouraging to see, however for many of us that ship has already sailed... or never even stopped to pick us up. My ex left me with 4 boys before we realized Tyler's disabilities but after the divorce he was still involved for awhile and then just disappeared as far as contact goes. The boys haven't seen or heard from him in about 2 years. He does pay child support and health insurance (although I just found out the latter is to be terminated in 3 days but don't know why). So, although I love that the dads on here are so active in their children's lives, what about addressing what to do when you don't have that partner's support and involvement. Whether that be from divorce, death, or whatever. I'm single again (had a great boyfriend for awhile that handled everything so wonderful) and I'm having to readjust and learn to manage my energy, time and everything all over again.
Also, I think I saw a little here somewhere about siblings and I think this is a topic that needs SO much attention. I have 3 older boys than my special needs child and besides going through a traumatic couple of years with the divorce and absence of dad, they are now dealing with Tylers diagnosis and the realities of life for him now as his disease progresses and the possibility of his death someday before they are adults. I try to balance their needs with Tylers and most of the time they are so very patient and understanding but I know it takes its toll on them.
Other ideas.... travelling with special needs, journaling (like maybe some content about how theraputic it can be and how to get started),
School issues are usually addressed but how about things like how to find a church/religious community that will accept your family as well as provide the support and community you need as an Exceptional family? (doesn't have to be religion/affiliation specific)
Organizing for the Exceptional family, like what records you need to keep handy and how to keep on top of the paper monster of reports, letters, EOBs, bills etc...
Emergency preparedness for special needs, especially for any family living in an area that is prone to natural disaster like tornado, flooding, hurricane, etc.
Ok... that's all for now lol... just in a brainstorming mood I guess!
I think if you could put up equipment reviews for different items (wheel chairs, helmets, cribs, etc) or maybe a how to section (we had to pad our sons crib so he wouldn't self injure). It would have been very useful information to share as the equipment changes constantly while they grow. Then people could post any issues and rate the equipment if they have used it. We had a wheel chair stroller type that our son was in and it was terrible. We used a everyday stroller instead for the travel convieniences it offered. Maybe you could get some manufacturers out there to give the odd piece of equipment to give away on the site. Maybe there could be a post page for people willing to donate equipment to others in need. Diapers everyone needs diapers...coupons?
Hello Linco,
That is a great idea. We actually have some contest planned that includes adaptive equipment. The other ideas were really good as well. Thanks!
It would be great if financial resources/help could be addressed. After the birth of my son, and realizing that his disability would force me to quit my job to care for him, our lives have completely changed. We ultimately wound up on Medicaid because no one else would insure his "pre-existing condition", we lost most everything. And now we find ourselves needing equipment, or wanting to participate in our therapies of choice and insurance is denying what we need. They tell you there are orgnaizations to help, yet many of those organizations find a way to say no too. The government says there are budget cuts so learn to make your own therapy equipment out of a "sheet". There isn't the kind of help that we need for parents like us.
I agree do a show on raising three children with special needs and the two other children are not severe enough to get any help , my daughter struggles every day, she just came in the door she had to work 2 to 12 today 10 hours on her feet for 8 dollars an hour, she won;t get to twork again since she works at the college she attends, she won;t get to work any more till school starts back, and then only after classes which is not much since she is a music major, right now her trumpet has broken and she cannot get it repaired and she bought it at a pawn shop and it is beyond repair after 3 years she will be a senior in college next year and at 31 thats pretty good, she will be a music teacher and band director, but not without that trumpet, but she can;t do in debt for a trumpet because it would mean food money away from her children, Brandon goes to a doctor out of town and gas money eats us up, we all live together my husband and i draw social security, i am blind in my right eye and an operation would fix that but i can;t afford the copays because i spend what little i have to help my daughter and grandchildren, my husbands check pays the rent and almost pays the utilities, its hard Brandon is supposed to be on pediasure because of his weight childrens rehab services stopped getting it for him, we cannot afford it, he is 10 and weighs only 57 pounds, Brittni needs braces so she can get her teeth fixed, she cannot close her mouth, its always open, James needs the hole in his ear fixed, but medicaid won;t pay for this , they say its cosmetic even though Brittni cannot close her mouth all the way, they still say cosmetic, where;s the help when us poor folk need it? thank god Brandon doesn;t need a wheel chair or anything because we could not afford it, he needs the insoles in his shoes to help his feet but the ones he had were too small any more and childrens rehab says no more money, so what are we to do? What about us folks who can;t go trampsing around the world for mediine and cures, / what about those of us who cant afford all the best doctors? There are folks out there that are inbetween so to speak, make too much for the services and too little to pay for them ourselves. What about us? who helps us/
Just found the site and no where near through absorbing it :) This is an amazing idea and great start.
I love the dads being involved and its so encouraging to see, however for many of us that ship has already sailed... or never even stopped to pick us up. My ex left me with 4 boys before we realized Tyler's disabilities but after the divorce he was still involved for awhile and then just disappeared as far as contact goes. The boys haven't seen or heard from him in about 2 years. He does pay child support and health insurance (although I just found out the latter is to be terminated in 3 days but don't know why). So, although I love that the dads on here are so active in their children's lives, what about addressing what to do when you don't have that partner's support and involvement. Whether that be from divorce, death, or whatever. I'm single again (had a great boyfriend for awhile that handled everything so wonderful) and I'm having to readjust and learn to manage my energy, time and everything all over again.
Also, I think I saw a little here somewhere about siblings and I think this is a topic that needs SO much attention. I have 3 older boys than my special needs child and besides going through a traumatic couple of years with the divorce and absence of dad, they are now dealing with Tylers diagnosis and the realities of life for him now as his disease progresses and the possibility of his death someday before they are adults. I try to balance their needs with Tylers and most of the time they are so very patient and understanding but I know it takes its toll on them.
Other ideas.... travelling with special needs, journaling (like maybe some content about how theraputic it can be and how to get started),
School issues are usually addressed but how about things like how to find a church/religious community that will accept your family as well as provide the support and community you need as an Exceptional family? (doesn't have to be religion/affiliation specific)
Organizing for the Exceptional family, like what records you need to keep handy and how to keep on top of the paper monster of reports, letters, EOBs, bills etc...
Emergency preparedness for special needs, especially for any family living in an area that is prone to natural disaster like tornado, flooding, hurricane, etc.
Ok... that's all for now lol... just in a brainstorming mood I guess!