Special Manners 101 - "You're In It For The Money"

"The easiest way for your children to learn about money is for you not to have any."
- Katharine Whitehorn

 Special Manners #103

Rowan was going to die almost from the moment we first saw him on the ultra sound screen at 14 weeks. He was never going to take that first breath. In July, he will turn 4. I admit that his birthdays strike a deeper cord with me then that of my other children. He has battled so hard to make a mark on a world that often just sees him as a number on a form. But those who love him know how far he pushes himself. 

He is one of three children that are still at home. His older sister is Autistic but is one of the luckier ones. She has grown and is a sweet, loving child who can speak, has a better control on her tantrums, and is open to learning the things she needs to function in a world that doesn't understand her. The oldest at home is an eleven year old who loves to read, is way too smart for her britches, and has the oddest cross to carry: she's the closest to normal in the home. Ask her, she'll tell you.

Rowan needs a wheel chair, braces that go from his toes to mid-calf, and other therapy items to help his legs and body do what it should. He has multiple diagnoses but no syndrome that carries a ribbon or a cause. I can use the puzzle ribbon for his Autism. A grey ribbon would be for his multiple allergies requiring a careful diet and also his asthma. The purple one is good for the ADHD, the seizures and even his daddy's crohns. Silver would show this is a child with disabilities and also person with a brain disorder. But I'm not sure what color covers apraxia, hearing loss, genetic disorder, chronic encephalopathy.... yeah, there's more but I can see you nodding off.

Here's the thing, he is a fighter. He pushes himself beyond the breaking point. He gets mad at himself when he can't do what he knows he should be able to do. He has shown the doctors to be wrong so many times and takes pride in it. This is a child who never should have taken his first breath.

He and the other kids have Medicaid. He has a special insurance called Children's Special Health Services. And I still have medical bills for him. Therapy is paid out of pocket. He needs speech but it costs $40 a week and should cost $80 but I took a day off of his time because I knew I couldn't make that payment. PT and OT both cost $165 each per visit. 

Around the holidays I asked for help meeting those needs. I shared it with some friends who sent it around their own circles. Not to long after I was told by a family friend that I was horrible for asking others to help when insurance would cover everything. *blink blink* Really? 

The Manner: Someone's resources are not as vast as the ocean and assuming that they are is rude. Insurance does not meet all of the needs of special needs children. There is no money in raising medically and developmentally fragile children. Often parents leave jobs to care for their kids. And if you aren't helping, it really is none of your business. And no, Obama's health care thing won't either and with all the politics surrounding it, who has the ability to wait for them to figure it all out? 

Why does Jerry Lewis hold a telethon? Why is there this foundation or that raising money for this disorder or that syndrome? Because there isn't any money in insurance to cover the pool that may help my son not spend hours crying in pain at night. Because there isn't any money to cover that at home program he needs to cover when we have to wait up to 15 months to start back at Physical Therapy. Because there isn't insurance money to buy communication devices to give him words. 

There are little things that aren't covered by insurance but cost money and are as important as medicine. Carnation Instant Breakfast adds calories to the diet of a child who won't eat. There are therapy tools that supplement the once a week visits that make those visits worth the money the spent on them. If you only do therapy once a week it is a waste because it all has to be learned again. 

Parents learn to cut corners and find supplemental items to keep things going but how does one supplement a wheel chair? In Michigan, medicaid is making pediatric patients wait 10 to 12 months to get their chairs, and by then they have nearly out grown them. Rowan's braces will not be the ones that the doctor wants for him because insurance won't cover them. That means they had to go to plan B and go with a less effective kind. 

People don't realize what goes into raising children with special needs. It isn't about babying them, or spoiling them, or them being lazy or anything else.... it is about helping them go as far as they can in the time that they have. If Rowan lives to his fourth birthday or his fiftieth or his hundredth, I want him to do all that he can with his time. 

And if luck is with the child, getting him as much help when he is young can make him higher functioning. And there is a lot of luck on his side, he can start working at some point and put back into the pot. This simple concept is lost on so many people who just right children off. 

I get hurt when I can't meet the needs of my children. I get ashamed when I have to find help. I get mad when I'm told by people who have no idea what it's like that insurance covers everything, that there are agencies to help, or that I'm just in it for the money.

On a side but related note: Social Security for these kids maxes out at $674 a month. And it isn't an amount that most people get. Just to cover that from the get go.

"Money is only a tool. It will take you wherever you wish, but it will not replace you as the driver."

- Ayn Rand

I forgot: a poem

Meagan's gift: a short tale about a great girl