I just got off the phone with a long-time friend of mine, another special needs mom. She's got two children on the spectrum, and is a single-parent who, on top of everything else, stays up all night making her children gluten-free muffins. I guess she figures she might as well make use of those hours, as autism mommies know-many kids on the spectrum do not sleep and she is up around the clock anyway. She works several jobs to make ends meet and somehow still manages to volunteer her time to Autism Awareness here in Orange County, NY. And I love and admire her greatly.
This incredible lady is one of many single mothers I know who are struggling financially to get her children what they need. Her health is suffering too, and she only has herself to rely on, day in and day out, and she just keeps on going. Her sons need health care and occupational therapy. So her own well-being can wait-the bills are piling up.
One thing that always makes my blood pressure steeply rise is that fact that Autism Spectrum Disorder is not considered a medical condition, therefore, insurance companies do not pay for any of the health care costs. So, heaven forbid, a child has cancer or diabetes, there is health insurance to cover the medical fees. My son needed two types of medication back when and it wasn't covered by insurance even though a medical doctor prescribed it. Does this make any sense at all? None of his therapies or medical interventions were covered either. Walking into a neurologist the first time cost $600. Basically, if your child has autism, you are out of luck. Additionally, you can spend years paying $125 an hour out of pocket for therapy, without help or reimbursement. And you still have to feed them and the rest of your family. End of story. It is a cruel and vicious cycle, because you would try and do anything to help your child. Lately I have heard a few states are looking at insurance reimbursement, and I hope the rest of the country picks up on this one day soon. It's too late for families like us, but it can greatly help all the many children who will have a diagnosis in the future.
There are times I have feared greatly my own health, and my own aging, because I worry about who would ever care for Jack, if something would happen to me, or my husband. The demons have plagued me night and day for several years now, as I am getting older and tire easier. There are things in life that are inevitable, but when you have a special child, the worry is enormous. And I think it's only been my faith in God that has kept me going when I felt like I couldn't face another day of worry and pain.
And so you go on, with a stack of bills three feet high, but you still do it. I am one of the fortunate ones not going it alone because my husband is still by my side. So we yell and fight and muddle through, but we are still here, and I am forever grateful to him because I really prefer having a team member in this game. So I say again, you never know what someone else is going through until you spend a day in their shoes. To all those single parents of special needs children everywhere, you are my heroes and heroines. You will have little fame in the world today, even for all your efforts. Here is the story for all to see.
May You Always Recognize The Blessings
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