Archive for the 'resources and organizations' Category

I know my rights

March 18, 2012

picture of a book with blank pages

image courtesy of Daniel Y. Go via flickr

Chloe’s special ed teacher understands.

“You don’t need that book, right?” she asks at every meeting, at the point where she is supposed to give me yet another copy of Your Rights Under the IDEA.

I don’t know how many copies I’ve received over the years, but I know how many I’ve read: zero. In case you didn’t click the link (I don’t blame you), here’s a sample.

“As a parent you have a right to be notified in writing a reasonable time before the public agency proposes to initiate or change the identification, evaluation or educational placement of your child or the provision of a free appropriate public education to your child.”

I find it hilarious that the first thing this document says is that “in the interests of simplicity, some of the rights have been paraphrased.” So in other words, that’s their idea of putting it simply. (Though I think they meant the language, not the rights, have been paraphrased, since how do you paraphrase an intangible concept like a right?)

I can do a little better: Before the school messes around with your kid’s IEP or changes anything about the way they teach your kid, they have to send you a confusing form letter with a bunch of boxes checked.

Which pretty much illustrates the real problem–even if they are stated simply, the legal rights of a special needs parents when it comes to getting your kid educated are still dizzyingly confusing.

Booklets, form letters and legalese don’t make your kid’s education better, they just give you a basis for complaining when things aren’t working.

When it comes down to it, these are the rights that count:

  1. You have the right to find the people who will be the most capable of understanding and teaching your kid. You have the right to make sure they are the ones who are in charge of her education (as long as you remember to use the words “most appropriate placement” not “best teacher” or “that school with all the iPads”).
  2. You have the right to do the research, read the literature, attend the workshops, learn the language and employ all the psychological and Vulcan mind tricks you can to get what you think is best for your child.
  3. You have the right to throw around the terms “least restrictive environment,” “inclusion,” “research-based teaching methods,” and “my lawyer” until you have sufficiently intimidated whatever bureaucrat is causing trouble.
  4. If all else fails, you have the right to be open-minded, get a third party opinion and look at the problem from a new perspective, or
  5. You have the right to sue the heck out of your school or
  6. You have the right to move to a different, more enlightened school district, city, state or country.
  7. You have the right to throw away that stupid booklet.


The small town of Special Needs

December 10, 2011

main street of a small town

image courtesy of incendiarymind via flickr

It’s been a while since Chloe participated in Miracle League baseball. On the surface, this is because of logistical challenges, but really, it’s because I never imagined that motherhood would involve hauling my kid to a team sport every Saturday, and I’m still trying to come to terms with this.

Obviously, I was fooling myself. My husband played just about every sport there was, and my brother even did his time in Little League. But I guess I thought my unathletic genes would win the day, especially if we had a girl. And when we had a girl with a significant physical disability, well, I thought I was completely off the hook. Listening to the tormented shouts of parents in the soccer fields behind our house, I always thought, “at least I’ll never have to do that.”

But I do have to do that. And yes, I’m very glad that Miracle League exists so Chloe has a chance to play baseball. But here’s the thing: that’s her only choice, baseball. If she didn’t have a disability, she could play soccer or rugby or  do yoga or hip-hop dancing or whatever kids are into these days. Or she could do none of these things. But she’s a disabled kid, and around here, disabled kids, they play baseball.

We live in a medium-sized town, but as a family with a disability, we also live in the very small town of Special Needs. As we look for services that are accessible and appropriate for Chloe, our options shrink to small-town size. In Special Needs, there are only a couple of schools. There are only a couple of doctors and dentists, and there are no summer camps or drama camps or art programs. In Special Needs, there are very few play grounds, and most of them don’t have swings.

It’s not anyone’s fault that the town of Special Needs is so limited. After all, it has relatively few citizens, and every year, it expands and adds more opportunities. But it’s still a small town, and small towns can be stifling.

In a larger town, you get the benefits of a diverse population. You can be exposed to different lifestyles and cultures, but you also have more opportunities to find people and organizations who share your values. In a larger town, parents who are looking for something out of the ordinary, something that caters to their artsy or literary or just plain kind of oddball values, can find places where other weirdos like them gather and begin the process of molding their kids into future high school newspaper editors or drama club members or viola players.

But in Special Needs, everyone plays baseball, so baseball is what you get.

Children’s hospitals can do better

November 6, 2011

an old neon sign pointing the way to a Children's Hospital

image courtest of roens, via flickr

It seems like every time a children’s hospital gets mentioned in conversation, someone has to talk about how wonderful they are, how they save kids’ lives. Well, of course they do, it’s their job. But like healthcare in general in this country, children’s hospitals need to do better.

I have several horror stories from our local children’s hospital. There was the time our doctor’s face turned white when he realized a nurse had put the wrong medication in Chloe’s IV. The time we spend 8 hours in the waiting room with a six-month-old whose head was covered in EEG wires, only to find out the wait and the wires were a mistake. And the time a neurologist assured us that one of the benefits of Chloe’s seizure medication was that she would swell up so much that our underweight daughter “would look fat.”

But one instance made me really understand the pitfalls of American healthcare, even when it’s in a hospital covered with bright colors and cartoons.

A couple of years ago, Chloe had a huge seizure that took a long time and a lot of drugs to get under control. In the emergency room of our suburban hospital, the atmosphere was of controlled chaos and supressed panic, especially when the doctor couldn’t find the right size tube to intubate her. Her oxygen level was dangerously low, and he finally decided to put in a tube that was slightly too small rather than deprive her of oxygen any longer. Then it was off to the Children’s Hospital.

There, the doctors explained that, while she no longer needed to be intubated, they wanted to leave the tube in for a few more hours, because they wanted to give her an MRI (because of past breathing issues, Chloe has to have a breathing tube when she is sedated for procedures like MRIs).

So the tube stayed in. And it became a concern to every nurse and respiratory therapist we saw, because it was too small. Air was leaking our from around it, making some machine beep all the time. Everyone told me it was no big deal, but they couldn’t stop looking at the numbers on the machine and discussing it among themselves. In addition, nurses were having trouble suctioning the tube–getting the mucus out of her lungs.

After several hours of this, we got the MRI. I had been tempted to refuse it, simply because it seemed like one of those expensive, unncessary procedures that hospitals are notorious for insisting on. The doctors explained that they wanted to check and make sure there wasn’t a new problem in Chloe’s brain that had caused the seizure. But there were already plenty of reasonable explanations:  Chloe has a brain injury and a history of seizures, and at the time of this seizure she had a very high fever.

I wanted to say no, but in that atmosphere, it was hard. How would I explain to the doctors and our family that I didn’t want to do everything they thought was necessary for my daughter? That I wanted to save taxpayer’s money (Chloe has Medicaid) rather than get a test they said she needed? So I kept my mouth shut, not realizing at the time that there were better reasons than money to refuse the test.

Hours later, after the MRI, the tube came out. Chloe wheezed and gasped, and it took several doses of steroids to calm her breathing. The respiratory therapist theorized that the smaller tube may have caused inflammation by moving around too much, and I realized we should have gotten that tube out hours before.

After a couple more days in the hospital, they sent us home. Chloe still had a high fever, but now we had seizure medication and an emergency dose of Valium to stop a big seizure–which I had to know to ask  for, since it wasn’t offered to us.

Hours after we returned home, Chloe had another seizure. We gave her the Valium and called an ambulance. At the hospital, she was diagnosed with pneumonia, and the doctor explained that it had several possible causes, one of them being the intubation.

The combination of seizures and pneumonia started a muscle spasm that racked her body for days, and when that finally ended, she had a sinus infection so bad she could hardly breathe. In all, she was very sick for an entire month.

Did that tube cause the pneumonia, and subsequently the second seizure, muscle spasms and sinus infection? I have no idea. But I do know that the MRI didn’t give us any new information, cost taxpayers thousands of dollars, and came with risks, like pneumonia from leaving the tube in longer, that were not discussed with us beforehand.

Yes, our children’s hospital save lives, but every time we’ve stayed there, we’ve been subjected to questionable procedures, thoughtless remarks, and just plain stupid mistakes. Children’s hospitals can do better.

Help the Family Leadership Project

January 30, 2011

In order to better serve families of people with disabilities, the Family Leadership Project is collecting the questions and issues that families need most. If you’ve attended the FLP, think of things that helped you the most, as well as things you wish were added. If you haven’t been to FLP, imagine that someone was going to answer all your questions about raising a child with a disability–what would those questions be?

Please put your answer in the comments section (not on my facebook page)

Thanks for your help!

Alphabet soup

January 17, 2011

“Oh dear,” said the the speaker at a recent training session on disability rights, “we forgot the Alphabet Soup brochure.”

Oh no not the alphabet soup brochure!  I know this brochure well…well, not “well” as in I’ve actually read the thing and found it helpful, but “well” as in I’ve seen its cover of among the big stacks of the other familiar brochures-I’ve-seen-but-never-read at every freaking one of these parent training sessions I’ve gone to.

I have the alphabet soup brochure right here (it’s been sitting untouched in Chloe’s file box for years).  It’s exactly what you imagine: a list of acronyms, each accompanied by the equally meaningless name of the organziation or concept behind the acronym.  Did you know that NASDDDS stands for the National Association of State Directors of Developmental Disabilities Services?  Or that IPII is “Independence, Productivity, Integration, Inclusion”? Me neither.  Will you remember that for more than the three seconds it took you to read about it here?  Me neither.

The back of the brochure encourages parents to start “learning your ABCs” because this bureaucractic shorthand is “one of the more important aspects of your education as a parent of a child with developmental disabilities.” After all, professionals in the field, including government workers and employees of non-profits, will use bureaucratic shorthand when they talk to you.

WHY?  Why oh why oh why do these otherwise helpful and well-intentioned organizations put their resources into creating these useless and intimidating brochures when all they have to do is INTERACT WITH THE PEOPLE THEY SERVE IN A NORMAL, HUMAN MANNER.

This is not so hard.  In fact, this is what I do for a living.  As a communications professional, it is my job to translate jargon into language that is accessible, meaningful and even interesting to the general public.  The environment in which I work is, like the world of disability organizations, chock full of weird acronyms.  My writing, on the other hand, is usually and conscientiously acronym-free.  It’s not that hard, if you just look at your communications from the perspective of the reader or listener, not the writer or speaker.

At this same training, the focus was on the two organizations presenting the information.  How did they get started?  How are they related to federal and state government?  What is their mission? How are they administered?  What other organizations are they affiliated with?

I’ve heard this song and dance about organizations several times, and it’s never helpful.  I still don’t know what most of these organizations actually do. I’ve always been confused about the difference between the Arkansas Disability Coalition and the Arkansas Disability Rights Center. Chloe got Early Intervention services from the time she was born, but when I look at that brochure, I don’t know if it’s talking about a government program, an organization, or simply a concept.  I’ve been a member of the Parent Advisory Council for over a year now, and I’m still not sure what it does.

These brochures, booklets, speakers, etc. work  very hard to spread their information, but they don’t say what parents need to hear.  What do parents need to hear?  That’s simple.   They want to know answers to their questions, and they want to know what questions they should be asking.  They want to know the names, phone numbers, and email addresses of the PEOPLE they can call for help.  They don’t give a damn who these people work for or what their organization’s mission or vision or history or whatever is.

If I were making these communications materials, I would focus on the readers.  Instead of having each of these organizations create their own set of impenetrable literature, I would suggest that each one have one small brochure, then create a set of publications that combined information about all of them.  After all, they all sound the same because, in the way that counts, they all do pretty much the same thing: help people.

This thing actually sort of exists already–it’s called the Parent Packet and it’s created by the Developmental Disability Council.  Who are they?  Don’t worry about it, they make the packet.  It lists all the bazillion organizations, grouped by their general area, like “legal assistance” or “information and referral services.”  (Just an aside, it also usually comes with a handy booklet in which to document your child’s medical issues.  Which was obviously not created by someone with a disabled child, because it is the size of People magazine, rather than the Lord of the Rings series if you include the Hobbit and the Silmarillion.  But I digress…)

I would go a step further with this thing.  Rather than vague headings like “information and referral services,” I would organize it by problems.  Like “I can’t afford my child’s medical care” or “The school is not helping my child learn.”  Then I would list names of people, not organizations.  The organizations would come second, listed by the names regular people actually call them, whether that’s the acronym or the actual name.

So under “I need equipment for my child” you would get “Call Bob (or whoever) at ICAN–555-5555.  He can tell you if ICAN has used equipment (such as wheelchairs and hospital beds) you can have for free, talk to you about what kind of equipment your child needs, and let you try out cool stuff like talking computers.”

Sound to good to be true?  It’s not–that’s what the people at ICAN do, but you would never know it from their entry in the parent packet, which accuses them of providing “information on assistive technology devices necessary for your child.”

I would also outlaw the use of certain terms in publications aimed at the general public.  “Assistive devices” would be one.  So would “transition,” which means the time when a kid graduates from high school.  Why not call it “high school graduation” like everyone else?  Despite the claims of these brochures, people can speak without jargon.  After all, your doctor has all kinds of fancy names for a cold, but when he’s talking to you, he just calls it a cold.

The Parent Packet does list people to contact, but these are usually the executive directors of the organization (or simply “a representative”), which tells me that someone needs to do a little more homework.  Yes, keeping this thing relevant and up-to-date would mean having one for each region of the state, and updating it about every six months.  Where would the resources come from?  From the time and money saved by getting rid of the Alphabet Soup brochure, for a start.

support groups, continued

August 10, 2010

Right after I posted the last entry, I got an email from a woman who was looking for help paying for an wheelchair van. I passed it along to the listserv, and within an hour, there were three new messages responding with ideas. It was awesome! And it also confirmed my suspicions about support groups: the people who find out about them tend to be the people who don’t need that much support.

We all need support, of course. And no matter how informed and well-connected you are, there are always times when you need help. The thing is that most of the people on my listserv tend to be the ones who don’t need that much help. They spend more time being answer-givers, not questions-askers. And when they do have a question, the listserv probably doesn’t look like the place to go, since no one else is asking questions there. So where are the question-askers? I suspect they’re in small towns and rural places where the support organizations don’t have offices. I suspect they can’t afford internet access, or don’t speak English very well. How do I reach these people?

Support groups aren’t only about asking questions and getting help, though. And that’s probably the reason they often fade out of existence. When I was busy trying to get groups started, I tended to focus on providing information: speakers, handout, etc. What I realized, though, is that if a group only exists to give information, people will only show up when they need it. Why would you go to a meeting about Early Intervention when your child is a teenager and you want to talk about transitioning out of high school?

I realized that support groups have to be more than monthly speakers, and I thought about my book club. Every month, we have a huge turn-out and spend two or three hours discussing…everything but the book. And that’s what a good support group is–a place to see people you care about and have meaningful conversations. I’ve been on several listservs that worked that way. In fact, I had to drop one of them because my in-box kept getting flooded with messages every time anyone had a birthday. I don’t want my listserv to be quite THAT active, but I would like it to be a place where people share whatever is on their minds.

Is that an environment I can create? Or does it need to evolve naturally? Do I need to be more of a conversation cheerleader? Maybe I just need to find a few other talkative people who can break the ice?

Support Groups

August 6, 2010

Well, it’s been a long crazy summer, even though it was only six weeks! But Chloe’s back at school, and I’m determined to be better about posting now.

So, support groups. I’ve tried to start several. Three or four. What happens is, you think “I’d like to get together with some other parents who are dealing with the same stuff as me, and we can talk about it and eat cookies or whatever.” You talk to a couple other parents, and they think it’s a great idea. So you reserve a room at the local community center, put up some fliers, send out some emails, contact some non-profit groups and get them to put a blurb in their newsletter, buy the cookies, set up a projector with some informational presentation or whatever, and wait. You wait there for an hour and eat all the cookies before you give up and go home.

Now, granted, this doesn’t happen every single time. In fact, most of the support group meetings I’ve helped organize had one or two people there. I think five was the record. But it’s never enough to maintain the momentum, and they all fizzle eventually. We finally gave up on the last support group, and moved it to a Yahoo listserv. I thought it was a great idea, and sent out emails to everyone on the list, telling them to sign up and we could start having conversations on the internet. Three people signed up, so that fizzled, too.

But I didn’t give up. I started another group, on Google groups this time, since it proved to be more user-friendly. I widened the membership, opening it to all disabilities and to professionals and adults with disabilities, too, instead of just parents. I contacted every organization I could think of, and got a lot of help coming up with ideas.
Right away, I got about 20 people signed up, and I started sending out emails, eager to start having helpful and interesting conversations with a diverse group of people. I forwarded informative emails, and brought up different discussion topics. A few people answered, and a couple even sent out the occasional email, but mostly, it became Camilla’s Repository of Information. I know some of it has been helpful to some people, but the listserv did not end up being the lively, dynamic conversation that I had hoped for.

Well, this is getting long enough for today. Tune in next time for my thoughts on why support groups fizzle and what someone could do about it. In the meantime, tell me what you think about my efforts. Any suggestions?

Crossing a Line

July 14, 2010

Recently, the inventor of what I call “our wacky therapy” published an article in the Journal of Bodywork and Movement Therapy, an important step toward scientific legitimacy, acceptance by mainstream medicine, and, most importantly, insurance payments. I’ve researched many therapies in an effort to find the best ones for Chloe, and I’ve seen many which present only anecdotal evidence, or cite tiny, badly organized studies to prove themselves, so the fact that ABR is being so thorough and careful in its approach makes me very happy. It also makes me think about the arbitrary line between “mainstream” and “alternative” approaches to health and medical treatment.

In medicine today, there are several issues that seem to divide people into these two camps. Vaccinations come to mind immediately. People who are against vaccinating children point out, correctly, that big drug companies get away with, (literally in some instances) murder and that they are not trustworthy. They also claim, preposterously, that vaccinations have been “proven” to cause autism and that this is a valid reason to expose millions of children to deadly diseases. The other side points out, correctly, that without vaccinations, many children would die and that our quality of life would plummet. They also claim, absurdly, that we should all shut up and trust doctors and drug companies, in a country that falls at the bottom of the list when it comes to quality of healthcare.

This either/or approach drives me nuts, because I believe that there are many valid treatments and medical approaches that are stuck on the “alternative” side of fence, destined to be scoffed at by doctors and championed by freaks. And when your child has an “uncurable” condition, like CP or autism, it’s frustrating to get handed the same old useless prescriptions by a doctor who warns you against trying anything nutty. It’s also frustrating that the “nutty” approaches tend to take short cuts to legitimacy, such as Dr. Wakefield’s severely flawed study of vaccinations and autism.

Which is why I’m happy that my bet, four years ago, that ABR was the most promising “nutty” therapy for CP seems to be paying off. Not only is Chloe’s range of motion and motor function steadily improving, but the therapy is improving as well. They are gathering extensive data of every child involved, and making their case in legitimate forums. ABR claims to present a paradigm shift in the field of biomechanics, and maybe someday we’ll see that shift having an impact.


June 9, 2010

Full disclosure: I get a discount on Chloe’s therapy for including links to ABR therapy sites and blogs by fellow ABR parents on this blog. I am not, however, required or encouraged to rave about the therapy, or say anything about it that I don’t actually believe.

So what is ABR, you may ask. Well, you should probably just go to the website; it explains it better than I could. When I talk to doctors, therapists, or other parents, I describe ABR as “a kind of massage.” And they all think that’s cool, if maybe a little wacky. I don’t say “it flies in the face of everything you think about brain injuries, cerebral palsy, spasticity and biomechanics” because, well, people don’t really like to hear that kind of thing.

Recently, Chloe and I saw a new doctor. When I mentioned ABR, she looked down at her lap and said “Oh.”

“You’ve heard of it?” I asked.

“Yes,” she said, carefully. “I think it couldn’t hurt, and it has probably helped her sensory issues.”

Sensory issues, whatever. ABR has little to do with sensory issues. Yes, it probably does help them, but that would just be a side effect. But the point is that yes, it doesn’t hurt. Unlike botox shots, baclofen pumps, surgery, and even physical therapy, ABR has few negative side effects. The only one is that it’s time consuming, and, for a parent like me with a wiggly kid, frustrating.

I can’t say for certain that ABR works. The ABR people are currently gathering information for a big study that will hopefully show benefits. But right now, anything I say falls under the category of “anecdotal evidence,” which means it could be a coincidental, or even my imagination. But I’ll tell you this. Before ABR, Chloe could not vocalize (except to cry) or reach for toys. She could not lift her arms past the level of her shoulders, and she couldn’t pull her head forward at all. Now she can do all these things. Small gains for years of intensive therapy, but they are gains. They are permanent, and she didn’t need drugs or surgery to achieve them. For the two years before we started ABR, she made no progress at all. None.

So that’s my take on ABR. When you have a severely disabled kid, the medical industry offers little or no hope. Most treatments come with pain and risks, and might not work at all. So I decided to look outside the mainstream, find something that could be the next big thing, the paradigm shift necessary to spawn a breakthrough. And I believe ABR is it. I could be wrong, but I choose to believe. ABR gives me hope.

5 things doctors won’t tell you about your special needs child

May 1, 2010

  1. Doctors and therapists are experts in their fields, not in your child. Your neurologist is an expert in brains, and your occupational therapist is an expert in fine motor skills.  Sometimes, they don’t know much about your kid’s condition in general, and on top of that, most of their training centers around typical brains, fine motor skills, etc.  They have important insights into one specific part of your child, but that’s it.  In some rare cases, there are doctors or therapists who specialize in one condition, like Janice Brunstrom, who knows a heck of a lot about CP.  But good luck finding one of these gems, and getting your insurance to pay!
  2. Therapies are like religions, and you should be a pantheist. Therapists, especially those who advocate an intensive, “outside the box” approach, will often expect you to follow their advice 24/7.  But no therapist is an expert on your kid (see number 1), and often, their advice is based on their own opinions and theories, not hard scientific evidence.  You might try one of these for a while, but if you don’t think it’s working, move on.  You don’t need a therapy guru; sometimes the best plan is to take the best pieces from a lot of different therapies and leave the rest.
  3. Equipment won’t solve your problems unless you have the support you need to choose and use it correctly. Do you have an expensive communication device or activity chair in your closet?  How about a wheelchair that doesn’t support your child correctly, but you use it because Medicaid won’t pay for a new one for two more years?  Join the club.  The most important thing about a piece of equipment is the support and advice you get with it.  Make sure your providers and therapists know their stuff before you waste your money.   If they don’t, find people who do.
  4. Everything has risks and benefits, and every choice has a downside. Everything you do for your child, whether it’s getting a baclofen pump or choosing an inclusive public school setting over a private therapy school, will deny your child something, but it will also give her opportunities she wouldn’t otherwise have.  It’s not about finding the perfect solution, it’s about weighing the wins against the losses.
  5. “Normal” is not the right goal for you child, or any child for that matter. Are you sacrificing therapy time with the AC device because oral speaking seems more “normal”?  Are you wearing out yourself and your child with potty training because you hate the thought of a seven year old in diapers?  You need to accept that the rules are different for your child.  As painful and problematic as it may seem now, some goals are not worth the effort.  Concentrate on what your child can accomplish, and find ways to make his life happier and safer.  Forget about “normal.”  It’s overrated.
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