An Ordinary Mom's Musings

We come to you begging for help.

A diagnosis.

A cure.

To bring back a semblance of normalcy.

Yes, it’s almost like we are asking you to be God. But you don’t have all the answers, and can’t preform all the miracles.

You run tests. You prescribe pills. You offer suggestions and requirements for the care of ourselves and our children.

What many of you in the medical profession may not understand, is that finances are a real issue for most of us.

If it is our child with the medical, or mental health issue, often one parent cannot work as they need to be available to take care of the child. Or if it is ourself with the issue, we lose time at work and sick leave doesn’t begin to cover the time we need to care for ourselves. If I were a single parent? My existence financially would be often precarious.

Because it isn’t just about being able to work. If you are lucky, you have decent health insurance or live in a state where you can get Medicaid for the disabled. But then there are the copays and all the things insurance doesn’t pay for.

Applied Behavioral Analysis (ABA) Therapy- considered one of the best therapies for helping those with Autism. Yet it will run $30-50 a day for copays, and the recommended amount is 40 hours a week. Add that up for a month. . .

Your child has debilitating food allergies? Insurance doesn’t help pay for the very expensive food that you have to buy to insure your child’s survival. That one loaf of bread at the health food store that costs $7 a loaf with 6 slices, is the only one your child can have and he lives on PB&J.

For safety reasons you need a car that has a third row to ensure that everyone in the family can get from point A to point B safely due to behavioral issues. (Some parents are still reduced to wearing a football helmet while driving to ensure they don’t get knocked out.) Insurance doesn’t cover the cost of a new car.

Medical supplies that your child needs in order to “poop”, a tablet to help with speech and other issues, a device to attempt to wake your 13 year old up in order to go to the bathroom at night as they still wet the bed. And oh, that doesn’t work so we’ll have to try a new one. Special strollers for your child that is immobile. Insurance doesn’t pay for all that. And if they do, they are going to make you jump through a year or more of hoops, with paperwork and phone calls to make a full time job look easy.

Dear Medical Professionals, we know you are trying to help. But when we are seeing 5 different specialists, and ALL of them are recommending things to help that aren’t covered by insurance and are expensive. . .

Pardon us if we don’t jump right on that. Yes, when we come back to see you in a month, in two months, we still haven’t gotten what you wanted. It’s not that we don’t want to get the very best for our child. It’s that we are saving for the thing that the Gastroenterologist recommended 3 months ago, and what you recommended we deemed not as urgent.

I don’t know what the answer is to these problems. I only know that as I talk with families, these are the issues facing all of us. Please understand. And if you hear of resources as you talk to other families, please, pass them on to us.