People ask me, "How do you do it?", meaning raising a special needs child. I tell them "it's not as bad as it may seem, it's like riding a roller coaster. You get on the ride the day they are born, and you just hang on tight, and try not to fall off on the next turn." We can't pick which way we want the next turn to go, we go where it takes us. I think that describes for me what raising this beautiful child has been like so for.
I decided long ago that what ever she needed I would find a way to provide. I would put her needs ahead of financial concerns, even if it meant we went broke. I did, and we did, went broke I mean. I would do it all the again, I still do.
I went to the Moebius Syndrome conference in New York when Lily was only 20 months old. I learned at that conference of the emotional difficulty it would be for Lily to grow up with a rare disorder. A disorder know one would understand. I had the opportunity to sit in on
an adult panel session that allowed us to ask them questions about what it was like to grow up with Moebius Syndrome. They all spoke of the depression they felt at a young age because they felt so all alone. They were the only ones they knew who had Moebius. They spoke of the emotional abuse they suffered at the hands of teasing children. It made me cry.
This has been my greatest concern since the day Lily was diagnosed with
Moebius Sequence. How much abuse would other children put her through?
How would she handle it? How can I help give her the skills to handle it?
Last week Lily and I were trying to communicate, I was having a little difficulty understanding part of what she was saying to me. She got frustrated, and angry with me. She paused, she sighed, she growled at me, "OH, I hate God, because God gave me Moebius Syndrome, and you can't
understand me." Lily is only 5 years old, I guess I wasn't prepared for that statement when she made it. I didn't think I would hear that so young. Although, I doubt I would be prepared to hear it no matter what her age.
Later that same day she voiced again her dismay at having Moebius Syndrome. In her words she hated Moebius, "...because no one at school has Moebius Syndrome, and no one at day care has Moebius Syndrome, and
no one at my old school had Moebius Syndrome, and no one at my old day care had Moebius Syndrome, just ME Momma, why do I have to have Moebius
It broke my heart to know she is already so understanding of how rare she is.
We were shopping at the mall on Saturday and she saw a little girl, a little younger than herself. She went up to her and said hi, she looked up at me and said, "does she have Moebius Syndrome, Momma?"
I don't know if I have all the skills I need to help her through all the trying times ahead. But I do know that there are many others out there
who are willing to help me and have given me some very important, helpful, supportive advise, and I am so thankful to be able to connect with them when I need them. I do put considerable time and effort into networking with others who have Moebius all over the world. Thank you for being here for all of us.
It is not easy to raise a "special needs" child, and often little or no cooperation
from your insurance company.
I remember someone once asking me if "do you ever just cry" because of all the challenges we are faced with raising our beautiful little girl. And I remember thinking about it carefully and responding to her that
"the only time I ever cry is when I have to call our insurance company".
I believe and I stress this is my opinion, but I believe that insurance representatives are taught to make sure they do not make it easy for us to get repeated coverage. I believe that we are "tagged" early on as a "try not to pay" client. And I believe many people are not aware of how to fight for coverage.
We go to special doctors, and many of them. These doctors tell us what our daughter needs to improve her life. Whether it be speech therapy, or
augmentive communication, or whatever. We call our insurance company and they tell us why they can not cover it. It doesn't matter if it is listed as a covered service, and it does not matter if is listed as an exclusion. An exclusion is something that your policy specifically lists as something that it will not pay for. If it is something your doctor recommends, there are steps you can take to get the bills paid for by the insurance company.
I learned of this method from a Reader's Digest article. It suggested if it something you medically need, first you should put your requests in
writing. Always put it in writing. This is documentation they can not
just ignore. Remember they can pretend that you never called. Give your insurance company a chance to respond to your requests. This will usually occur with in a month or so. If they turn down your request, don't give up, you have another option.
All of us in the USA have a state government office dedicated to overseeing insurance companies. Put together a letter to your states insurance department, include in the letter the name of the insured person needing the coverage. Include the insurance ID number that your insurance company will recognize. Give an accurate description of what
your medical needs or prescribed therapy or equipment may be. Ask them
to evaluate your needs and the needs you are not having met by your insurance company. I recommend you make a copy of this letter and send
to your insurance company and your prescribing physician. Send all three
Each time I have done as I described it has taken about one month of evaluation of the situation. Every time, it has resulted in a positive answer to my request. One of these requests was for medical equipment that was a "listed exclusion" to my policy. They paid for it anyway because the state asked them to do so. The states theory is, if it is needed then an insurance company should make every effort to pay for it. Although my experience has been that more time is spent trying not to pay.
I met a man who had worked for years for a large insurance company, and
I told him what I had learned about fighting his big company. He told me it was common practice within the company that if a client had made contact with the state a few times, then you should "just cover them". They receive a blemish on their file each time a client contacts the state about their company. So it to their advantage to take care of you so that you won't involve the state.
I have found this procedure very useful. And if you can learn to fight with the big insurance companies you can fight and beat anyone.