Information for parents of disabled children

Tuesday, April 24, 2012

It's just not personal.

Autism Family Camp Weekend 2009
Autism Family Camp Weekend 2009 (Photo credit: Camp ASCCA)
Children with autism have meltdowns. We say it. We acknowledge it routinely, as it is repeated like a mantra by parents trying to prepare professionals for the moment their child goes ballistic. Every parent knows there will be a moment when our lovable, sweet comedian isn't so funny.

There will be screaming, hitting, kicking, and other unwelcome social behaviors. What's surprising is not how many people don't understand the autistic meltdown, but how many professionals don't fully understand until the day arrives.

The severity of the autism can define how bad it gets, and it can get bad. If you're working with any disabled student, there are some things you need to know.


  • It's not personal. You're just there. They didn't hit you because they hate you. Something is getting to them, and, just like when dealing with Alzheimer's patients, this is a good time to pause, back off or get out of the way. 
  • They can't stop it. Only you can prevent autism meltdowns (except when you can't)!  Know what is pushing them too far. Get to know the triggers, and don't blame them for things they can't control. 
  • Safety first.  Worry about causes later, but at the height of the meltdown your focus has to be on the student and keeping everyone safe. Deal with the behavior before you discuss causes. The worst thing you can do is have that discussion in front of the student while he's already wound up. 

Enhanced by Zemanta

Monday, April 23, 2012

Guest Blogger: Jeff Stimpson


 
Jeff Stimpson

jeffslife.tripod.com/alextheboy
Twitter: @Jeffslife
Books: Alex: The Fathering of a Preemie and 
Alex the Boy: Episodes From A Family's Life With Autism

+++++++++++++++

Jobs to Do
 
They're talking jobs in Alex's future, as he nears 14 and "vocational" begins to appear on his IEP. They're talking "jobs" in 14 million other futures right now of course, but as Alex gets closer to adulthood I try to not think about that.
 
There are various jobs Alex can do. Even now in the grocery store, he aligns cans so the labels face the same way. At grandpa's lake house, he sets the table for a dozen with the handles of the coffee cups all facing the same way. There are other examples.
 
Jobs he does:
 
Alex empties the dishwasher every morning before the sun is up (his schoolbus comes at 6, and he's often up by 4:30 anyway). "Knives, forks and spoons, Alex," I say over the lower bin, which I've pulled out after he's made sure to close the soap box. One by one he drops the utensils clattering into their slots in the drawer. Except for the paper-thin tablespoons Jill paid 25-cent each for, of course; Alex hates those, and morning after morning he tries to slide them unnoticed into the rear end of the drawer.
 
He does laundry, hauling the heavy cart to the elevator and punching B for basement. I still keep an eye on him down there, as it wasn't long ago that he darted for the door and even locked himself in the bathroom. These days, he scoops the fallen socks and underwear from the floor and stuffs them into the triple-loaders. When the laundry's done, he wrestles the tangles from the washer. Once, when all the triples were taken and we had to use the double front-loaders, Alex stared at the triples then looked for a moment at the doubles. He wanted to understand but the doubles were new to him. He wanted to understand - and I ached as I sure hoped Alex didn't realize that other people understand the difference between the doubles and the triples much, much faster than he can.
 
Jobs he creates:
 
Sweeping pretzel and cookie crumbs from the cushion of the couch, the floor of the living room, and Ned's bed, where Alex perches - never on his own bed - to munch and watch the iPad. "Alex put crumbs in my bed!" says Ned, his arms arcing madly across the sheets. When I was a little kid, I could never sleep when I thought there were crumbs in my bed, either. Thanks, Alex!I don't like to think about them roaches.
 
Alex up in the middle of the night and first thing in the morning also means I have to wipe piss from around the toilet bowl. Enough of that, for now. He scatters clothes when he's picking out what he's going to wear that day, socks and pants and T shirts littered around the foot of his dresser like Civil War dead in the Brady photograph around the walls of a fort. Alex scatters Legos and makes Ned cry and then swear. Thanks, Alex!
 
We learn more about Alex and jobs when we visit his classroom. We learn he orders the supplies for his classroom and delivers newspapers to all the classrooms in his school.
 
We learn too that he sweeps floors and wipes tables in his classroom. Funny he never mentioned that to us.

Friday, March 30, 2012

Resources for the "one of" special needs student

Mississippi | MissouriMississippi | Missouri (Photo credit: Kevin Saff)Moving to a small town was disconcerting, but finding out there were no children like D was even more so. No autistic students were enrolled at his level of cognitive difficulty.

 Indy is a veritable melting pot of disabilities and disorders, and every resource you could think of is represented somehow by their number. It made information easy to come by when you search. Here, even people are hard to find, and they are typically my favorite resources. People always seem to know something outside the manuals and tend to supply anecdotal guidance.

The first step after relocation is to find your local advocacy agency.
MPACT is the local equivalent to INsource back home in Indiana.
Here is where you find your most important resource, the law.

Determining placement here is a bit slow, so far. Children like D (severely disabled) must apply to the schools that are appropriate in the area in a fairly involved process with much testing and much discussion. We're waiting to hear now.

Rural areas are, understandably, lacking in my favorite resource; people. Take your support where you can find it. Schools and online resources are the best bet in a farm community.


Enhanced by Zemanta

Thursday, March 29, 2012

My one in eighty-eight.

Light It Up BlueLight It Up Blue (Photo credit: Wikipedia)Everyone has by now heard about the CDC's revision of autism rates this week. You'd have to live under a rock to miss it. Sometimes people need to see the numbers, I get that, but just as often we lose the perspective in the big picture.

D is my one in eighty-eight. He certainly isn't the only one that counts to me, but he's the one , about whom, I am an expert. Much like those number crunchers up at the CDC. I have a specialty in the big picture. It's the big picture of one little man.

Widen that lens to include eighty-eight others, then hundreds and thousands, just like him, and my heart stops for a second. This number is up from 1 in 110. Think of the impact of that increase, even if it can be explained by detection. One in every eighty-eight who needs neurology, special education, dental care, accommodations and modifications, and more medical care than I can even name. It's mind boggling.

There is not just personal devastation with every autism diagnosis, but there is a social and economic devastation, as well. Autism has to become a priority, not just for the parents of the diagnosed or the lobby, but for society at large. Denial can't be laughed off any longer, nor can indifference continue unchecked. With rates rising at this pace, one thing is certain; whoever you are and whatever you do, it's only a matter of time.
Enhanced by Zemanta

Saturday, March 10, 2012

Autism and the single mother, or what the hell was I thinking?

Meeting Tigger at the Dark ride The Many Adven...Image via WikipediaAutism makes things mixed up and not make sense, except in the most literal or basic way. Moving away from our friends, leaving our home, and moving on from the family we've all known wasn't ever going to be easy. It's also not like I have a choice. I just didn't expect it to be this hard.

Still, as I wrestled my child in a strange Wal-mart yesterday, I realized what we'd left behind, namely, a community that already knew my child. When D had a public meltdown in Indy, people knew us, and I could even tell you that they just ignored it for the most part, in some situations. Plus, the big towns just have more autism.

Not so here in Podunk, Missouri. The backwater towns are getting a culture immersion from our family. Autism just moved to town, and I do mean that literally. We're the only ones. Like Tigger, but less fun. I have to break in a whole new life and manage my son's fragile happiness.

The divorce statistics for couples with autistic children have always blown me away, and I can't say I wasn't warned. 85% of couples seek a divorce, and growing evidence suggests the ones who stay together may be thinking economically. With this growing number of single mothers (and Dads) managing autism, how are people missing this? How are there still places where people don't know how hard autism can be? Autism awareness has a long way to go.

God knows, we're doing our part. Look out, Podunk. You ain't seen nothing yet.
Enhanced by Zemanta

Wednesday, February 29, 2012

What a Difference a Move Makes?

So, it's been a while. . .

Since last we talked, I've experienced multiple life changes, but the strangest one was to leave Indianapolis for , literal, greener pastures. We have returned to small, town USA in Missouri.

 First thing I noticed?

Special education here is run from the state. Now, I'm not saying it goes fast; but, already, I see a change in quality of service. Placement decisions must be justified in writing. They are made at the state DOE. Placement is by the numbers. Sure, that could become negative in a borderline situation, where you have a child who seems very abled needing more supports or a parent who really wants inclusion education with a more severe child. I can't be sure what that will look like over time, but the system I see is as well regulated as any I've ever seen.

Other thing I've noticed?

I haven't seen a single Bill or Tim here. Not one. Oh, the bliss.

There are no overpaid, power hungry directors of special education in my life at all! Just one nice lady who fills out applications and helps us work with the state and write an IEP. One nice lady. My heart just skipped a beat.

Do you know what a relief that is? Our lives, literally, felt embattled and under seige. We felt disenfranchised and disconnected from society by our son's disability. Now, I feel like all the other moms. I don't have to march on a school board or storm the state house. I can focus on what my kids need and what I want to do with myself.

The best advice I can give to parents in Indiana is MOVE...now.

Sunday, July 10, 2011

Who's the bridge?

Sign language DImage via WikipediaWe had an interesting teaching moment this week. My son and I went out to play in the neighborhood. My usual routine is to stand back and let him go when possible and watch closely. As has happened often, this time intervention was required.

Some boys started mockingly saying he "looked like Justin Beiber". I think we should conclude that was a bad thing. Not that I have an opinion.  My m.o. is always to avoid the sins through education. As I walked across the playground thinking "welcome to school, boys", they looked a little apprehensive. I may have a reputation that precedes.

What followed was a twenty minute autism Q &A with four of the cutest ten-year-olds on the block, and an incredible interaction for my son. We talked about sign language and why my son can be "creepy" when he stares. We exchanged information, and, at the end, they wanted to go try their new sign language on him and say hi. He said hi back.

Just like that, a potential bully situation became a seminar in autism. D bounced off the playground feeling included, and, with any luck, four young men developed a special view of the disabled.

Autism awareness flows from our willingness to get over ourselves as parents. We have to see our child as the world sees him in order to interpret for him. That isn't easy. I suspect it isn't meant to be.

We are the bridge, which means we have to connect to the other side. D can be creepy if you don't know him, and when he screams and yells, it wakes the dead and makes young hearts tremble. I have to accept these things before I can help anyone else connect with him. If I get all momma bear when someone finds him creepy, I'm already defensive and ineffectual. But if I reach out with information, I'm a teacher, an ambassador.  That's not D's job. It's mine. I'm the Bridge.
Enhanced by Zemanta

Friday, June 10, 2011

Big changes at RISE!

Rise Special Services, that was, has become the Southside Services of Marion County and is apparently going to be under new leadership as of June 30th. Bill Dreibilbis, who has run the program for nearly a decade, has resigned his post.

Parents are hopeful on the announcement. As Rise, the school district faced multiple law suits, many state complaints, and much resistance from parents frustrated by the seemingly underhanded process of writing IEPs. Combined with the interlocal changeover, parents hope this signals a change in the way of doing business at SSSMC.

Sunday, June 5, 2011

The Homeschool Adventure Begins

Vector clockImage via WikipediaWell, it is finished. My husband and I have decided to pull our son out of Perry Township schools and teach him at home. There is a rumor of a Franklin Township group of parents, sick of the RISE Special Services failure, who are working on the starting phases of a charter school for our students. Anyone who knows this group, I'd love to get in touch and talk to them about the idea. This blog will continue as long as I continue to volunteer my time with families still in the system. It's our hope to move and find a program that works for Darrel.
If our homeschool experiment is successful, I may begin to blog about what we learn about that as well.
Enhanced by Zemanta

Tuesday, April 26, 2011

RISE Special Services Q & A

3D Character and Question MarkImage by 姒儿喵喵 via FlickrMay 12th seems to be the magic day for parents of SPED students in the four townships, Beech Grove, Franklin, Decatur and Perry, to get answers. Here is my submission to the RLC PTA for the event.


  1. What will the top down structure look like?
  2. What voice will parents have in policy building, such as parent members of an advisory committee? 
  3. What steps will be taken to insure transparency in policy building?
  4. Will parent education, including information on law, teaching methods and advocacy for their student be a priority for the interlocal? If so, what mechanisms will be in place to deliver this service?
  5. If parents have a dispute with specific administrators, who will be the mediator in order to avoid the complaint process provided by DOE? Will you institute a formal process to give parents access to objective mediation which will help the schools avoid expensive due process proceedings?
  6. How will the interlocal improve staff and administration training across all environments, classrooms, bus transportation, etc.?
  7. The school has been given orders of correction this year for violations of the individualized education plan for several students. What system of checks and balances, staff training and administrative supervision will you put in place to avoid this in future?
  8. What definitive standards will be put in place to determine teacher and administrative performance?
  9. Who will be the administrative staff of RISE Learning Center?
  10. Will Administrative staff in all the townships receive extensive training and professional development through the new Interlocal? If not, why?
 If you live in one of these townships, you can submit your questions to RISE Special Services at 5391 Shelby Ave. Indianapolis, IN 46227 . 317*789*1650 Time and Location to follow.
Enhanced by Zemanta

Friday, April 15, 2011

This morning, it just hurts.

May_30_Health_Care_Rally_NP (585)Image by seiuhealthcare775nw via FlickrSo much was easy when I was young, even medical care, and I was thoroughly unaware. I get it now though. Especially, dealing with my teeth.

This morning I woke up with a swollen mouth. It's a tooth I tried to have pulled at a low-cost clinic a while back. For 45 minutes and forty dollars, they pulled, only to tell me in the end that I'd need an oral surgeon.  That means it stays, and I wait. But, for what?

For our family, it's become a waiting game. How long till the insurance? Just a few more hours and we qualify. We just have to make it a month or six. The jobs just have to be there, and they haven't been steady as any ironworker will tell you.   If you read my blog, then you know we have an autistic child.

Some of the political rhetoric has been pretty strong; war on the middle class, the plan is to die sooner, and on and on. They are strong words, but I get what those words mean at this moment. We did what we were supposed to over the years. We worked, and then one day, insurance was hard to get. It just wasn't there. We even did a tour in Iraq or two, to get it temporarily. We live in a city where I could walk to a dentist without breaking a sweat on a July day. If I could afford one. Even on insurance, I can't afford it, since most is fifty percent coverage. For me, that left $8000.00 on the bill. We can't. We just can't. When things get this bad, you feel like it's a war. It's as desperate as battle, and sometimes, like now, it feels like life and death. It is life and death. A tooth can kill you eventually.

I could write about how it's fiscally damaging to not provide health care for those on the poor end of the spectrum who are important to the workforce. I could tell you all about how when I am gone, when my husband is gone, we don't know where D will end up. I could wax eloquent on the subject of biblical truth and the qualities of mercy not being strained, but not this morning. Because this morning, it just hurts.

And I wish it would stop. It hurts that something as stupid as an infected tooth could kill me living in America, that living in these modern times nothing has really changed. I feel like a failure, and my jaw is sore. I'm tired and in pain. This probably just sounds like angst to your average boot-straps kinda guy, but life can't get more discouraging than this. Just. . . if you have it, be thankful for it.


Enhanced by Zemanta

Saturday, April 9, 2011

In a perfect world, we'd all be lawyers.

US Supreme CourtImage by dbking via FlickrParents of disabled children already wear many hats. Since IDEA, we've had to don yet another and hang out our shingles whether we wanted to or not. At least, those of us who were able. It's the rest of that population that is our subject today.

As I've said before, Indiana's Article Seven and IDEA guarantee certain rights for the disabled student. Is that enough?

Most emphatically, NO.

In order to navigate the system, I had advantages. One, I had only some college, so my husband and I recognized my time was most valuable at home. Little did we know, it would be imperative. Two, I found training in the law fairly early on in our journey, and made a study of it ever after. Three, when I did get part time work, it was as a substitute instructional assistant in my son's school. The rest was history.

Our son has needed a lawyer almost from day one, and we couldn't afford one. We had to make do with my makeshift law degree. This gave us access to the complaint system, but it still denies us access to due process. Without access to the courts, our battle has had to be a political one. Squeaky wheel gets the grease.

The primary problem with that is that I didn't stop squeaking. I discovered a whole school of students without speech therapy and went to war alongside their parents to make the school do the right thing. One thing led to another, as our parent's group discovered violation after violation of the law and went to work on them. Now, I attend conferences and consult with parents on their IEPs in my spare time, and we still miss things.

Article Seven is a law with all the whys and wherefores that entails. It isn't easy for a housewife with some college to navigate, and, for some, it isn't possible. Many of my friends work a job, or a job and a half, on top of parenting a disabled child. They can't put in the hours that I have. Single mothers, forget about it. Many parents don't understand the law because it's a law, and that's why we have lawyers. A majority of us are broke what with all the medical bills.

A law without access is like a dance without music. It's missing something. When lines are drawn on a socio-economic basis, it's called disenfranchisement. Being unable to enforce your child's education because it's too expensive isn't much off the days before the wheelchair ramp.

So, families need a ramp. Teachers are a natural advocate for a student. They know the information and usually have the willingness (or did they pick the wrong job!). However, teachers answer to administrators who answer to superintendents who answer to politicians. You can see the problem. Our schools need to get back to the days when teachers were the advocates for families and let them make the recommendations that make sense for the child.

In the event this relationship breaks down, the simplest, second-best thing is to get the school, who failed to nurture the parent/teacher relationship, to pay for the family's advocate. The advocate doesn't have to be a lawyer.  Most often, it's a mom who did this on her own. Every advocate I know was the mother of a special needs child.

This would give all parents access, and advocates are more like coaches. Therefore, the training the parent would receive as a result could allow them to advocate for themselves in future. At the very least, it would put the parent back in the Case Conference Committee as an equal player and not a subservient.
Enhanced by Zemanta

The home/school connection and shooting the moon.

Indianapolis Children's MuseumImage by Brandy Shaul via FlickrWhy are administrators required at case conferences? Simple. They commit funds and services. The end.

Administrators are the final authority on what can and cannot be implemented. Now, does the law say cost is not to be considered? Yes, it does, but the unspoken truth is that it is considered and will always be. That's why you have to have the admin present. Though the teacher is widely considered the primary representative,  his or her boss is the heavyweight.

And while parents hold directors of special education responsible for results in the classroom, school boards and superintendents squeeze them in the pocketbook more often than not. So what if we took the administration out of the picture? What would parents and teachers do if left to their own devices? Imagine a case conference with no politics involved.

Probably, teachers would do exactly what they wanted to do all along; write the perfect program for the student before them. What are they doing with an administrator's oversight? They are considering how best to meet the student's needs on the budget understood from the get-go. We all see the practical side. You have to know how much something costs, right?  You can't dream big on a budget.

Besides the obvious benefits of early intervention, there is a cost effectiveness to early investment in disabled children. Most development will happen during the school years, and the potential for development is the foundation for independence later in life. Clipping special education funding now will lead to larger bills in the future. It's the difference between 24 hour hospital care or assisted living with minimal assistance.

How do we get school districts on board?

We could do what we do now, and trust administrators to do the right thing. We could pass even more laws that we will weakly enforce. We could take a different road altogether, since what we're doing isn't working. How bout we take the administrator out of the conference till the end? And then his job is to get the desired services on his budget or broker some sort of solution with the family to keep impact on the child minimal.

We could put a premium on the parent/teacher relationship by removing external pressures to ensure that all recommendations are made in good faith and by the two or three most appropriate people in the child's life. Goal centered education should consider all the possibilities, and then break down the logistics. It's corny but true, that old saying; Shoot for the moon, even if you miss, you land among the stars. Why not let our teachers shoot the moon?
Enhanced by Zemanta

Keep the ball moving.

Conseco FieldhouseImage by thoth188 via FlickrPerry Township schools are home to RISE Special Services, soon to change their name; and one hopes, their practices. This township is the gold standard, for how to get special education wrong. If you want to know what not to do, look no further. RISE is a shining example of how to move the ball without scoring actual points.

Testing Optional

A shortage of funds has led to a shortage of professionals in an era of massive student demand. This was the argument administrators used to justify the change to testing policy for disabled students. Unfortunately, this is also an excellent way to cut costs. Testing equals data on the student. Data equals information. Information equals power for teachers and parents to make recommendations regarding program, services and staffing. This testing no longer has a mandatory deadline of every three years, again due to a lack of psych staff in schools, according to administrators.

There is no doubt that school psychologists are overloaded. However, the removal of mandatory testing guidelines has the unique ability to drastically reduce the amount of services considered appropriate for a student, and that inevitably lightens the school's load. Parents can trigger re-evaluation, but many don't know that or take the school's recommendations that testing is not necessary.

Call me suspicious, but this sounds like a sweetheart deal for directors feeling the pressure from school boards across the state to cut back. And it comes with a consequence proof excuse to give the state DOE. It wasn't required.

Testing is only one benchmark to evaluate a student's progress, but it's the one most considered when discussing a change of program or placement, both can be expensive. This means a child could languish in a program that is no longer appropriate or miss out on a chance to include with normal peers for lack of data.

Perry Practices

By and large, parents of mildly disabled students notice nothing lacking in their child's education. Those who are easily included in general education usually have no trouble getting minor accommodations for their student. It's the other end of the spectrum that has a wrench in the works.

Besides oodles of administrative redundancy, Perry has an overall unfriendly way of dealing with parents. Lawsuits are way up, according to Bill Dreibelbis, but he's quick to point out  that we live in a sue happy society, and it's the nature of the beast. That's one interpretation, or we could be doing something wrong. The fact is that complaints with the state are up, too, and testing isn't automatic. Couple this with parent dissatisfaction with staffing discipline and training, and you have a perfect storm of malpractice. Of course, the motto seems to be that it's all good, as long as we keep the ball moving. Hitting the hoop is secondary.


Enhanced by Zemanta

Does Indiana have FAEPE? Meh.

The Indiana StatehouseImage by Jim Nix / Nomadic Pursuits via FlickrOur recent experiences as a family in the special education system of Indiana have illustrated a new social problem for Hoosiers, but perhaps for others across the nation. The idea behind IDEA and all its sister laws was to guarantee equivalent education for the disabled, and maybe, at the time, we didn't know what that really meant. There's great cost involved.

To be realistic, there are good teachers, bad teachers, great administrators and bad directors everywhere. People are people, and just being an educator doesn't guarantee good intentions. It's true of any job, but in few places does it have more effect than in education. Education becomes slave to local politics. That is directly juxtaposed to the intention of Article Seven and IDEA, the laws governing our treatment of disabled students.

Parents, already financially strapped due to massive medical bills, have a law that allows them the right to advocate for their child. Great! How's that working in Indiana?

It's not. Not really.

Children take what they are given, and services do not always follow the individual needs of the child as they are meant to do. Why? Because politics demands cost cutting somewhere, and these kids are most vulnerable to that reduction of funds. Sadly, discrimination still exists, and it's most apparent at school board meetings where equal is defined in a school district. So why don't parents sue? There's a law, right?

While the law guarantees the right, it doesn't guarantee access.
Money does that. Money that disabled children and their families don't have because they are disabled. The weakness in the law falls in the category of socio-economic disenfranchisement. In the next few posts, I intend to explore the subject further; looking at the details and discussing options that lawmakers and administrators have at their disposal.



Enhanced by Zemanta

Wednesday, March 16, 2011

Who watches the watchmen?

A graffiti similar to those who appear on the ...Image via Wikipedia



On February 24 of this year, the South Indianapolis Star ran a story on RISE Learning Center. In it, Anne Davis, who is the director of Indiana's Division of Exceptional Learners, was quoted. 

All parents want the very best they can have for their children. I believe that schools are doing the best they can to provide the best services for their students, but sometimes those two pictures don't match. Everyone comes to the table with the best expectations, but their perspectives change.

This is the woman who defines the state of Indiana's special education. She thinks it's okay, and schools are doing all they can;  except that it's not, and they aren't as a whole. Rise Special Services, soon to be South Side Special Services of Marion County, is chief among the offenders.

Parents can present evidence for how this happens, and have. Procedure gets a little devil-may-care. Parents don't know what's happening and when. Recommendations go unmade and testing undone. Then, the IEP stands with minimal services "offered"to that child. Anne Davis has a responsibility to see that IEPs like this are never written in the state of Indiana. That is best done through the training of administration on those same procedures and making it policy to get testing done as a matter of course.

This year, testing policy was loosened to allow schools to skip it, if it's not needed. It's often unneeded by a school's estimation. This was done, as so often is the case, because of a shortage, schools claim.  Testing puts documentation in the hands of parents and leads directly to program and service decisions. 

This year, Anne Davis also granted RISE Special Services' request for reconsideration of the findings in a complaint found for the family of the student allowing them to skip training for all administrators in Perry Township of Marion County and only train two administrators at the Learning Center.

Special education can be costly, but avoiding the expense now only leads to more expense and loss later, even if you ignore the loss of quality of life for students. We can continue to ignore parents, pretend they are being over-emotional basket-cases, or we can fix the problem, plan for the future and try to serve each individual.
Enhanced by Zemanta

Monday, March 14, 2011

How do you say it?

Subject: Quinn, a boy with autism, and the lin...Image via WikipediaIn a couple weeks, I'm due to meet with the Indiana Superintendent of Schools, Dr. Tony Bennett. This week, I'm agonizing over how I'll say it. How do I convey what it's like to watch a school go downhill? How do I explain that it's not about the idea that school is the cure, but whether my son is valued as a person? How do I tell him about the human cost of bad schools in Indiana?

What if it's all about the bottom line?

Here's the saddest question floating around in my mind this morning; What if he doesn't care? It's been our family's experience that this is the biggest obstacle between our children and education. People don't always care, and, yes, sometimes they care about Darrel even less. After all, what will he be when he grows up? Autistic.

RISE Special Services may have individuals who care and work and strive, but the organization as a whole doesn't have the mission. It's lost in the pressure to cut costs and "include" because it's cheaper. True supported inclusion is expensive as any advocate or professional will tell you. It requires trained staff and equipment to make sure kids have what they need to be successful in Inclusion programs. Unfortunately, that's not the only problem RISE has.

Where do we go from here?

Last year at RISE Learning Center, the school that should be the training hub, I sat in a classroom of non-verbal students and found they never worked on reading. No one worked on communication systems of any kind, and there was little accountability on the part of the administration. That teacher is elsewhere now, but the "culture" that led to the oversight remains.

My son's IEP marks the first time in the history of RLC that an autism program has been implemented in its walls. You read that right, but I'll wait to let you look at that sentence again. . . .  Yes, my son's STAR program marks the first time in 30 years of serving students most severely affected by Autism that a program for autism has been implemented. NO staff in the school are trained in ABA at all, and the school hires out for that service at great cost.

How do you reform hearts?

Those are the problems, or at least, a few of them. How do you make someone care about your child if they don't? That's not to say he doesn't. Maybe, Tony Bennett is the one in a hundred. Maybe, I'll walk in there and see a man committed to fair implementation who is outraged at the years of lost opportunities.  Maybe, or maybe not. It's possible it will be just like it always has been when I leave.

My husband is out building a bridge this morning. The kids are off to Perry schools in the city, and I'm sitting here agonizing over education and how to change it. It seems odd. When we realized D would be different, that our lives would be different, I don't think I truly understood what it meant. I thought it meant we would grieve for the life D won't have, move on to struggle through the one we have and rejoice at the small victories each day like every other family with disability.

In addition to those things, I find myself in a crusade to reform a school for all the children who have become so special to our family, classmates and friends. How do I get people to sign up for the mission into which we were drafted? What can I say that will make them look twice at what we're doing, right and wrong? If we don't value the most vulnerable children in our society, how on earth can I make this argument effectively? It all hinges on where our hearts are.

Enhanced by Zemanta

Tuesday, March 8, 2011

A not so quiet crisis

Cover of "Hoosiers"Cover of HoosiersIn Quiet Crisis  
Follow this link and you will find stories of families and individuals facing disabilities with few services and true grit. Advocacy for persons with disabilities is on the rise in Indiana. It's a sad development because it means disabled Hoosiers need advocates.

Get involved with your local advocates today! Developmental disabilities wait for no one.  Autism, Downs syndrome, and other disorders happen each day whether or not we're prepared to deal with them.


Enhanced by Zemanta

Wednesday, March 2, 2011

Corrective actions at RISE Learning Center




In spite of the STAR report to the contrary, action against RLC is actually occurring. Our family filed a complaint in January. This snapshot of the complaint outlines the outcome of the investigation. Portions stricken from the report are changes made by Anne Davis at DOE at the request of Mr. Dreibelbis who asked for a reconsideration. He was, not surprisingly, granted one.

The change made to this corrective action will have far-reaching results, I fear. Instead of training all special education administrators, Mr. Dreibelbis need only train the few directly involved with the school itself on the grounds that this complaint doesn't prove systemic failure. If there were not already a collection of complaints in the archives, I could agree with him. However, there are more complaints, a fact Mrs. Davis decided to dismiss.

While families contend the school isn't doing the job it's tasked to do, Mrs. Davis goes on record stating that the school's vision of education and the parent's sometimes don't look the same. Job descriptions, however, should be fairly plain. Parents at RLC continue to contend that officials connected with the school are not doing theirs. Training is dismal among the teachers and staff, especially in the area of special ed. law.  Instead of responding to the demand for training, staff have been ordered that only teachers may have direct contact with parents. Wonder why?
Enhanced by Zemanta

Friday, February 25, 2011

Power to the mommies!

American social reformer, Jane AddamsImage via WikipediaThere is no need to lie to an audience and pretend that the author of this blog is no reformer. There's no getting away from what I am. If there were a sign to carry about special education in Indiana, I'd be there holding it and singing We Shall Overcome till the cows come home. It's discouraging that this is so often a bad thing in social circles.

Reformers seldom win popularity contests. They make waves, and therefore they make enemies. If you don't believe it, ask a suffragette or civil rights protester of the sixties. To bring it into modern terms, ask a Libyan or Egyptian on the streets. These are extremes, but no less difficult is the life of the mom fighting for free and equal public education for a disabled child in today's world. Instead, moms and dads of the disabled have to be in it for the long haul. A revolution has a foreseeable end, not so with disability and education coming together.

The battle to provide services for children will be fought again and again, until our society prioritizes its most vulnerable. Before I had a child with autism, I would have assumed (did assume) that we had jumped that hurdle with disability. Now, I know better.

There is an unwillingness to "waste" money on educating kids who "can't succeed". So many in our culture never think that the problem isn't with the kid, or even the disability, but with our definition of success.

I wish I could say to parents it will get better, but I don't know that. What I do know is that to change society it will take outspoken, passionate advocates, and it will take time. Parents are the pioneers to reform because they have the most to lose. We have to embrace who and what we are. Damn the torpedoes and full speed ahead!
Enhanced by Zemanta