Whoa! Whoa! Whoa! They're Not Speaking For Me!

The University of North Carolina at Chapel Hill has recently released a study regarding the financial situations of families raising disabled children. There is an article summarizing the study on the UNC website, as the study itself will be published in an upcoming edition of "Exceptional Child" magazine. As such, I haven't seen the actual study, but only read the summary of it on UNC's website.

Let me start this by saying that I really don't want to cause problems. I really don't. However, there are some blaring errors in this study, ideas that aren't taken into account and generalities made.

The biggest issue is: what is a disabled child?

To lump all disabled children, let alone all disabled people, into one broad category of "disabled children" is simply ignorant. Do they really think that a child who needs a prosthetic leg to walk has the same needs as a child who is unable to breath without constant assistance? Or a child who is missing an arm requires the same aid as a child learning to handle their diabetes? What about a child with mild cerebral palsy versus a child with extremely severe cerebral palsy? Does a blind child have the same needs as a child that is unable to walk? What about an anemic kid versus an autistic kid? Actually, compare two kids with autism -- do they have the exact same needs? Taking all children with disabilities and lumping them into one category is just plain ignorant, and definitely faulty science.

In addition to that, what is their control group? They claim to have surveyed 28,841 families -- were they all families with a "disabled" child? Were half of them families without a "disabled" child? I mean, YOU HOO, the economy is not doing well, my friends, could their counterparts be reporting the same issues?

According to the article on the UNC website, " The UNC study found that overall, families across all income levels who are raising disabled children are significantly more challenged by food, housing and health issues compared to families without disabled children. Many also struggled to pay their phone bills."

Now, why is that? There are two reasons that I think are possible.

First of all, how well are the families managing their money? Are they unable to pay their bills because of the stress of their disabled child, or are they unable to pay their bills because they (like so many in our culture) have been living beyond their means and the disability provides a great scapegoat for them? I'm thinking that basic phone service, without any of the frills or long distance, is still only about $30 a month -- there has to be some pretty significant reasons that a middle or upper income family struggles to pay that. My first guess would be that it isn't a $30 phone bill, but a $150 phone/cell phone/Internet/long distance bill. If that's the case, then this is an issue of priority, because your family needs food much more than they need Internet or cable.

Another reason, I believe, might be related to the disability but not the disability itself. Of course, I'm referring to the dear medical professionals that recommend incredibly expensive solutions. When we adopted Nappy, the first doctor we saw said she needed a 350lb power chair in order to "function". If we had gone that route, all the additional expenses of setting our house and car up for this power chair, would have cost us anywhere from $20,000- $100,000. Money we don't have. It was incredibly difficult to accept the fact that we couldn't provide for our daughter what the doctor was saying she "needed". In the end, though, it was the best thing for her, and her quality of life, right now, is much higher because we chose to forgo that solution. She may actually walk!!!!

I swear, our culture's answer to every problem involves spending lots of money!

Perhaps some of these parents have found themselves in this financial bind because they have followed the advice of some professionals, without looking at the bigger picture.

And, I'm sure, that there are some in this position because their child has a terrible difficult special need that requires serious medical care and intervention. My intent is not to claim otherwise, but to point out that there is much more to this picture than this study is portraying.

Take for example dental care.

The article stated, "Though the study found that children with disabilities were more likely to have health insurance and a usual source of care, they were 61 percent more likely than non-disabled children to have postponed necessary medical care and 83 percent more likely to have postponed needed dental care. The study didn’t examine the causes for those results, but Parish said they likely are related to the expenses of obtaining care – even with health insurance – and other issues, such as limited transportation."


What they don't look at, as they themselves admit, are the causes for this. Well, let me enlighten everyone on that.

When you have a child that has multiple special needs, then you have to prioritize those needs or you and the child will go insane. For instance, in the past year Swimmer Girl has had major hip surgery, 7 weeks in a body cast, 2 months to relearn to walk, various visits to the prosthetist for leg adjusts and a bout of strep and several other normal "kid diseases". Guess what? We didn't get to the dentist within the recommended 6 months. It just wasn't a priority. I would also like to get her to the allergist because she has displayed numerous signs of allergies I would like to identify. Guess what? It hasn't happened!

Why? Certainly finances are not an issue with this. Her medical bills are covered through our insurance. We have transportation. So, this issue is that there is only so much a person can do at one time, so the successful strategy is to prioritize.

The thing that bugs me about both this study and this article is that it continues to perpetuate the myth that dealing with a disability is this terrible horrible life shattering thing. It perpetuates the myth that the entire family suffers as a result of the disability and that disabilities create terrible financial hardships. In my 6 years of experience in dealing with our daughters' disabilities, I have to say that I have not experienced that. Yes, the disability is hard. Yes, there is grief involved. Yes, it does require more doctor visits and medical expenses (although there is a lot of both public and private help available between government programs, Shriners, and other organizations). However, no, it doesn't have to break the bank, and no it's not "bleak" or "chilling" as this article indicates.

I've found parenting my daughters, just like my sons, to be very rewarding.

That Child (Known to Christ as Adam Race)

In case you haven't yet heard, there is controversy swirling around the country regarding a Catholic priest in Minnesota that has filed a restraining order against a 13-year-old boy who is severely autistic. A full article can be found here, and I find this situation troubling to say the least.

The situation is still sketchy at best. For instance, the press has not detailed what kinds of accommodations that the church has offered to the family, and the family is claiming that there were no complaints until the day that the priest showed up at their house. Obviously, something is amiss here with information.

There are some facts that weigh in on the side of the church:

1) Adam Race has severe behavioral problems, far beyond what people normally experience in a crowd.
2) Adam Race is large and can be dangerous to the people around him
3) Some of Adam's problems can probably be remedied with certain accommodations, but, in general Adam will probably always have unpredictable behavior.

However, here are some facts that weigh in against the church:

1) Adam is a child of God
2) It is NOT Adam's fault that he is severely autistic
3) Even if some of Adam's behavior is poor parenting, it is, again, not his fault.
4) While church is a public place, whether protestant or catholic, it is more than that. For crying out loud, if a church can't be inclusive then what can be?

I've read blog posts where people are trying to compare this to taking him to the movie theaters, and all I can say to that is: it is not the same, and to even compare the two shows a real lack of understanding of what the purpose of church/worship is, let alone what Christianity is.

I've read blog posts and comments where people are claiming his parents haven't parented him. To that, I would respond: it doesn't matter. Shouldn't the church be seeking even more involvement if that's the case?

I've read blog posts and comments where people are claiming that the family should just go to mass separately. To that I would say that that does nothing to help the spiritual growth of the family, or the spiritual growth of his parent's marriage. There's already enough stress on the family, should they be split for church? Shouldn't their priest be concerned with the health of their family? I also don't think the entire family should be kept from mass. That's a sure way to lose the other 5 siblings from the faith!

I've read blog posts and comments where people are stating that the parents should simply control him better. To that, I would have to say that they probably don't understand his disability.

I'm not denying that his behavior is probably out of control and intervention is necessary. I'm also not doubting that he can function better at church. However, why is the church not willing to explicitly state the "accommodations" offered to the Race family unless those accommodations were not really realistic or useful? Why has the church not addressed the issue of how Adam got the car keys to get into a car and "rev" the engine? Has the church never had an elderly person wet their pants in a pew? What about a toddler or a preschooler? For that matter, has anyone ever vomited in the church? There are signs, many signs, that the church has not attempted to create an environment or situation Adam could be successful in.

Another thing that really bothers me with this situation is how the diocese refers to him as "that child" -- there's no grace, no mercy, no sadness over the fact that they can't meet their parishioner's need. He's not Adam Race, child of God, he's "that child" -- the bad one, the one that wets his pants in the pew, the one that behaves inappropriately. They are coming off as completely blind to the fact that he's the child that his parents are trying to teach to relate to God, something that must be an enormously difficult task considering that people with autism suffer socially and, often times, relationally.


It also strikes me as wrong (and unscriptural) to involve the police and the courts with this matter, especially when, from all appearances, the church has done little to work with the family. I happen to believe that getting involved would be the very thing that Jesus would do. If the church would present themselves, specifically, as having tried all avenues possible to help Adam connect with God and help nurture his family's spiritual growth and ability to worship together, if the church had done everything they could do to ensure a safe environment (that would mean the parishioners NOT leaving keys in the car), and Adam posed a safety threat, then it might merit involving the civil authorities. But as it stands, it really looks like this priest just wanted to wash his hands of an uncomfortable parishioner.

Yet, this is just a symptom of a greater problem. Something like only 5% of the disabled population attends church on a regular basis. Why is this? Christians misunderstanding of disabilities (God made you special!) and desire to see every person with a disability healed whether they want to or not, would probably play one of the biggest roles. Lack of respect for the abilities of the disabled also plays a part. However, discrimination like we're seeing here is certainly a key component of the problem. People will say that banning him from mass doesn't mean that you're not loving him, but all I can say to that is: bull-loney!!!!! Being excluded from something for reason's beyond your control is NOT love. If you think it is, I'd prefer you'd never love me or my family!

Here, after years of believing that everyone was valuable to God -- everyone: the prostitute, the demon-possessed, the poor, the cheater, the rapist, the pornographer, the drug dealer, the doctor, the pastor, the missionary, the engineer, the teacher, the nurse, etc. we're seeing a situation where one finds that you truly can be bad enough to get kicked out of church. For the sake of many parents out there, I hope that bored little boys who attend that parish don't find out about this -- they just might have found their ticket to a more interesting Sunday morning! Be really bad in Mass and then the priest will kick you out!

In many Christian's minds, not just this one priest, there is a hierarchy, and that makes not only the disabled feel unwelcome, but the parents of children who don't behave well unwelcome too.

I mean, how bad is "too bad"? Where is it appropriate to draw the line?

Despite the horrible behavior, despite his large size and despite the fact that he can be dangerous, Adam Race was still made in the image God. Adam Race's life has the ability to reflect God's glory, even though this corrupted creation has done everything it can to hide that. How incredibly sad that "that church" is not grieving over what they couldn't do, grieving over Adam's losses, and earnestly looking for a solution that serves him and his family rather than their convenience. And how embarrassing that they felt the need to involve civil authorities on a matter that they should've been able to solve on their own.

What is so incredibly sad about this, to me, is that the Catholic Church has always been such a beacon of light regarding the sanctity of life, both of the unborn and the disabled. Why would a priest seek to snuff that light out? I hope that the righteous in the Catholic Church will stand up to this priest, and I pray that those that love Jesus will out shine this one man who simply has a completely different agenda.

Dumb Jocks! (A Blog Title Sure to Make My Husband Very Nervous)

I can't say that I don't like to make dumb jock jokes, because, well, I do. But this goes beyond dumb jocks, and since my daughter is definitely athletic material (albeit intelligent athletic material) my number of "dumb jock" jokes has significantly decreased in the past few years. They certainly number less than my blond jokes.

However there is a reason that my husband often watches football with the volume turned down, and that reason isn't just my constant commenting on what the football commentators are saying, although that would be reason enough for most people. It's what they're saying that causes him to keep the volume off.

"Tell me," says the wise, thoughtful sportscaster, "How do you feel about losing today? Especially that play in the last quarter?"

Okay, what, exactly does the sportscaster think he's going to say?

"It felt greeeaaaat to lose!"

"I especially enjoyed the moment when I fumbled the ball and tripped and fell in front of millions of viewers!"

Stupid stupid stupid, yes, it's stupid. One Sunday afternoon could provide me with a weeks worth of blog fodder! But stupidity from the football field isn't even the tip of the dumb jock iceberg. In fact, an international board of athletes is saying the most absurd thing I've ever heard -- even further out there than this:




The International Association of Athletics Federations has barred a double amputee runner from competing in the Olympics in Beijing because his running legs are "technical aids" that give him a "clear advantage."

Oscar Pistorius runs on what are called "Cheetah legs", legs that are specifically designed for racing. However, according to the geniuses of the IAAF, these legs don't just replace his missing lower legs, ankles and feet -- they give him super power! Apparently they have never heard of the concept of a level playing field.

Of course, their defense raises a natural question.

If, as they state, the cheetah legs perform so well, then why is Pistorius the only double amputee who is potentially contending for Olympics? Wouldn't we see droves of amputee athletes routinely defeating their able body counterparts?

Stupid stupid stupid!

The real issue, of course, is that there is a group of athletes that don't want to be beaten by a guy with no legs.

Here's a good dumb jock joke.

"What's more embarrassing than being beaten in a race against a man with no legs?"

"I don't know, Deb, what is more embarrassing than being beaten in a race against a man with no legs?"

"Realizing that you were one of the morons who said he couldn't compete in the first place!"