Fighting Frustrations; When the System Seems to Be Fighting You

Image via WikipediaWhen working toward a negotiable goal with your child's school, it's possible to become frustrated, and irritated, and. . . you get the picture. Some resistance can become lots of resistance, and your sunny disposition goes right out the window because this is your kid we're talking about here. There are ways to break through that resistance and come out on the other side with relationships intact, as well as an acceptable IEP. It starts with you.

Know Your Stuff


Research your positions, so that you can communicate that position clearly and without snarkiness. We seldom snark when we have facts and figures to quote. Unfortunately, this means we get homework. Pull out the old IEP binder and get to work. The safest way to start, in my opinion, is to decide on your deal-breakers.  What issue will force you up and away from the table? Once those are prioritized, you'll know where to start researching.


Know Your Enemy

Let me reassure you that it's usually not an enemy, more like an obstruction. It's not a good idea to assume an administrator is not "on your side". Admins are very often worker bees in the hive. They have job descriptions and requirements. Seldom are these people your enemy, but neither are they your friend. These are professionals. Once you really grasp that, it's not a long jump to the next logical conclusion. So are you!

As a mother or father, you have the most diverse job description known to man. You are the resident expert on your child. The data you have on this particular student is invaluable to the school's staff. They need your input.

Treat this like a business meeting. Wear a suit if you have to! If you come at this from a professional frame of mind, it will help you be the advocate you need to be. If you are losing your temper, stop the meeting. Ask for a break or a reschedule. The law gives you the right to do this. 


Know Thyself

Maybe this makes me the cockeyed optimist in the room, but I really believe most parents can do this on their own. It takes time and work and gumption. It's hard, still is it really harder than what we do already? Any one of us can do this. 


Degrees and doctorates are not required to get a diagnosis in the family. All it takes is breathing to get that news. Most diseases and disorders are no respecters of persons. As a parent, our limitations are what we say they are. How often do we tell our child with special needs 'they can do it'? Take a moment to look in the mirror and say it to yourself. After all, you've gotten this far, right?

Just Another Intervention

 

Do you have a BIP? Behavior intervention plans are, in most cases, essential for any child on the spectrum. In the case of my son, behavior intervention is a primary discussion each year about this time. In gen. ed. settings, it's frequently never discussed with the excuse that " Johnny doesn't need it".

Yet.

Often, families don't even know to discuss it until after a behavior puts their child in the doghouse with teachers or administration. With behavior, an ounce of prevention is worth a pound of cure. You can argue that typical kids need the same things, but the trouble is that ASD interferes with a child's understanding of everything practically.

What needs to be in an intervention plan? As a parent, you can keep certain things in mind as you prepare to discuss your BIP. First, don't assume anything! Funny Story; when I was a small child, but not too small, I tried to unplug my atari- which was stuck- with a butter knife. Scary, huh? But no one ever once told me that metal conducted electricity. They assumed I knew. Now, what do they say about assuming things again? Second, how well do you think your child understands right and wrong?  For instance, some kids may make the assumption that if their friends do something, it's all right. This is more than peer pressure. It's processing information in a very specific way. I like my friends. I respect them, and they smoke. It must be okay. Finally, ASD causes kids to have socialization issues. You've heard it before, but it bears repeating.

Again, we're talking about assumptions here. If a kid is a basketball star, has friends based around that activity, and appears to communicate well, does that mean he's cured? Think of all the issues surrounding those things. Fearing rejection by your peers drives all of us, even adults, to behave stupidly. Think about having ASD coupled with that pressure and anxiety. We have to make sure our kids can handle all social situations and understand the full impact of each decision on their lives.

In Indiana, at least, a parent has the ability to put that behavior intervention into practice and keep it there. Schools only have so much time to intervene. It's imperative that we start ASAP, before they stick the butter knife in the light socket!

Vaccines and The Crisis of Faith

Image via Wikipedia

The blog quoted below Age of Autism contains some objectionable content akin to hate speech. I do feel however that the information quoted by them here has validity and can be looked at objectively by a reader.

AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality View the entire study HERE. Generation Rescue, Inc. April 2009 The United States has the highest number of mandated vaccines for children under 5 in the world (36, double the Western world average of 18), the highest autism rate in the world (1 in 150 children, 10 times or more the rate of some other Western countries), but only places 34th in the world for its children under 5 mortality rate. What's going on?

via www.ageofautism.com

Our family took a pass on H1N1 this year. It wasn't entirely paranoia that drove our decision, though I admit to being a vaccine skeptic who investigates each shot like I'm interviewing childcare providers. I work in the school my son attends and knew we'd probably already been exposed, so the urgency wasn't there. I was right by the way.  I'm not anti-vaccine, but every parent should do a risk assessment. Will the potential benefit to my child outweigh the risk?

However, from pregnancy, I've wondered at the logic involved in mercury use. I remember getting the pamphlet to avoid fish because of mercury content and thinking, "But it's okay to put in shots?" When I found out that thimerosal was no longer a necessary ingredient, my decision was made. Why do it if you don't have to?  Problem solved.



Now, we decide these things based entirely on our family history and vaccine contra-indications. We also have a family member in the reserve military, and that opens a whole other can of worms with Uncle Sam. Seizure disorder is the primary issue facing us. For instance, Pertussis has a manufacturer's warning against use when the patient has a first-degree relative with seizure disorder - brother, mother, sister, father. Bundling of vaccines makes smart vaccination almost impossible for us. Just try getting the D and the T, without the P. Insurance won't pay for it, and our doctor couldn't order it because of the loss she'd incur. It only comes in bulk. Can't blame her there. We even hit a wall at the local health department.



My point is that everything should be considered logically. There is no either/or on the subject of vaccines, only when/if. But why stigmatize parents who choose to vaccinate intelligently by spreading out a child's vaccine schedule or act on the advice of the makers of the vaccine? See articles below.  My answer is that we've become arrogant in our ability to overcome death and disease. We've decided as a society that we finally know it all, and, well, if we happen to be wrong in a case or two, that's the minority. It's the only explanation I can find for such a rigid mandate that vaccine is sacrosanct.


They (born again vaccinaters) don't seem to understand that the one in a hundred who goes against medical logic and have an injured child thereafter, they don't really worry about the other ninety-nine. Their child is the only one who matters at that moment. This makes vaccine a personal decision, just as much as surgery or antibiotics would be between a family and a doctor. Of course, you can argue that it affects anyone who could become exposed by your family. That's partially true which is why parents should be encouraged to do a risk assessment. Vaccinating when the danger from disease is great and personal risk is low isn't a hardship. Our case illustrates this point.


Did we get MMR? Yes, but when we felt ready and without mercury additives. Did we get pertussis? Not just no, but . . .
Seizures are a very real risk that we see clearly now from watching what they do to our son and knowing our other children are also at risk. 

Here's the thing. Our children look to us to act as their eyes and ears until such time as they can do it for themselves. When looking all the information over, we decided that no one needs a hep shot on their first day on the planet. We decided that seizures are bad, and if Pfizer says it's a bad idea, it probably is. Last but not least, I decided that these were my kids, and I'm going to protect them as much as I can. That may disturb a few people and concern the CDC, but they can do what they want with their own children. My family has a different way of doing things.

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