Information for parents of disabled children

Sunday, May 30, 2010

Documentation? Of What?

Oh, how often do parents feel this is how schools are responding to them when they ask for daily record keeping! Truth is that we're running into a lack of professional standards in Southern Indianapolis. I don't know about the rest of the state, but documentation here is overall dismal.

Parents can more effectively ask for documentation if they know exactly what they want. Today, I intend to walk you through a fictional scatter plot. It's written for little Johnny Smith:
We want to figure out why Johnny is getting all hitty with his teachers. The plot simply defines the activities of the days with corresponding boxes to be checked quickly. They are marked x for severe aggression, / for mild aggression, and blacked out for no aggression in that time period. You can quantify this, if you like going from 0 to 5 instances, 5 to 10, etc. At the top, you fill in blanks with student information. The respondent is the chart keeper or keeper's identity. When defining the behaviors, be concise and specific. In this case, aggression is further defined as hitting, biting and kicking.

What do we determine about little Johnny's day from the data before us? Well, he does NOT like lunchtime, and recess is no picnic. He had two days of near angelic goodness in the middle of the week. We have a pattern.

The teacher takes this data, or should, and can collaborate with others to determine why Johnny can't eat in peace. Did I mention Johnny's sensory issues? We should look at those. How are his relationships with staff? When the teacher really scrutinized Johnny's day, here's what she noticed.

The noise in the cafeteria really wound him up. He grew more agitated, until Sally, the T.A. working with him, got flustered and out of sorts. When really watching, she noticed more, like Sally really didn't seem to like Johnny and couldn't handle him with any sensitivity to his condition. Further, Sally had a cold for two days and missed school mid-week. Hmm. Did we just find two correctable problems?

Data helps parents track their child's condition, and it makes for excellent professional review. Parents may have to push like the dickens to get this in place and make schools adhere to it. But say you have a non-verbal student, how valuable would this chart be? These are standard tools, so if you meet resistance in the classroom, an explanation would easily be in order from administrators as to why this is too hard to implement. Honestly, how hard is it to check a box?
Reblog this post [with Zemanta]

Friday, May 28, 2010

All The Time In The World

Lonely Beach BallImage by JasonTromm via Flickr
Summer should be a fun break for everyone, right? Here it is nearly June. The kids are home, and I'm already tired. After three days of end-of-school meltdowns, I'm pooped emotionally.

The park was fun for the fifteen minutes we were there. The house looks more like a hurricane blew through than before. Hurricane Darrel is destructive. At least, a 4. The worst part is that I know he's losing time. I'm no professional. I mimic the professionals as much as I can, but I know the expertise I need is not at my fingertips. For three months, we're on our own.

Speech therapy is easy, at least I think it is. It's all the rest; challenging behaviors, sensory issues, and loss of all that precious knowledge we put in his head all year. That is the frustration I have as a parent when lawmakers and schools in one breath push professional intervention, and express in the next that the family has undefined and undetermined responsibilities to fix their kids. My favorite is the phrase used so often that "school isn't a cure".

Newsflash. For most of us, there is no improvement bordering on "cure". Nobody gets a cure with autism. Education is, however, the only viable treatment for autism we have which is available for most regardless of cost. It is our best bet for reducing the cost effect of so many disabled entering society at one time. It's the difference between a child completely dependent on one-on-one aids for personal care into adulthood and a child only partially dependent and able to perform basic self-care. School may not be a cure, but, when you have a child with autism, you sure miss it when it's gone.

Reblog this post [with Zemanta]

Tuesday, May 18, 2010

A Good Day for Change!

Teacher's DeskImage by Pikaluk via Flickr

Obama set to take on Teacher's unions

Jonathon Martin writes on this morning that teacher's unions may not hold the sway they have in past years. There is no question that the unions back Dems at 90 percentile range almost across the board. It's also true they are party faithful working the campaigns across the nation, however, in a fit of principle, it appears the president may be going a different direction in calling for teacher accountability and year round school years.

From a special education standpoint, this could be big news. Students with disabilities at this moment have an option that is rarely used for extended school year services should they regress on a regular basis and at much faster rates than their typical peers, which most of them do. It is, of course, expensive. Moving away from the agrarian calendar we now use would change all of that for a great many students. Of course, this change would mean longer breaks in the middle of the year and would require adjustments on the part of parents. Some Sped students would still need ESY during long breaks, but I suspect a large number would retain better and progress farther should the change be implemented. Our family relies on school as childcare to keep us both working which means, for three months out of the year, I'm on the bench. Many families with special needs would be on board right out of the gate. Single income families on the spectrum are so often not that way by choice.

The calls for accountability could change things for the better as well. Having an incredible teacher is like getting hit by lightening; when it happens, you feel it. It's also about that rare. Great teachers are talented and lucky is the family that finds one, but good teachers just aren't the standard these days, in part because the standard pay doesn't meet the cost of education for teachers and in part because of the protection of the unions.

Many teachers stop school with a degree in mild disability, leaving the mild to severe range of students working with an extremely small pool. Professional development costs money and is often the first thing to go. Training is cut short. So calls for accountability must also address the concerns of the unions while not allowing them to dominate the conversation.

It's a surprising turn taking on the unions pet issues this way. Critics of unions cite the big money the lobby throws into the pot at election time, likening their opposition of reforms to the behavior of big oil or the coal industry. One such website aimed at "exposing" the unions is

They state on their site, "There is no disputing that America’s teachers unions -- in particular, the National Education Association and the American Federation of Teachers -- are the most organized and powerful voices in education politics." As an involved parent, I find I can't dispute it. Our difficulties with Indiana special education find me often stumbling over the interests of the Indiana State Teacher's Association. I've even been warned not to take them on in a meeting because I "had no idea how powerful ISTA could be."

On the other hand, why do we have unions in the first place? The short answer is because education is steeped in local politics. Cronyism and closed door deals have dominated the entire institution, and unions were supposed to fight that. My observations suggest, however, that a union can become too locally politicized. This makes the union a prize to be sought in local elections which can be ugly and corrupt. Unions have a very specific function that may not be compatible with the goals of education. They may work well for individuals, but many, including myself, question whether they are good for society if education gets compromised along the way. Our president speaks the truth when he says we aren't competitive on the global stage.

Reblog this post [with Zemanta]

Thursday, May 6, 2010


It's a blessing....and a curse....100 yearsImage by Coal and Ice via Flickr
For some time now, I've dialed back my resistance of our school's administration. I've rooted for the inter-local and wished for its success. That inter-local isn't even here yet, and the disappointment seems inevitable. A wise woman once said to me in a training that your child's education doesn't have to be a Lexus, but the state has to give you a Ford at least. Well, Darrel is kicking the tires on a jalopy and wondering where it all went wrong.

There were big plans for ABA training. It never happened. Neither did TEAACH or anything else for that matter. We got a parent on the Autism Team for the township, and I was so excited. Oh, what we could do! Nothing. That's what we could do. Nothing happened.

 We have so much technology, so many programs, and so much we could use to make our kids functional. It wasn't a matter of cost. I know that will be the excuse given, but it's just that, an excuse. Implementing policy in the classroom usually doesn't cost a dime. The price is will-power. Orientation training for teacher's assistants who do the lion's share of the work, that takes time, but it's worth it. Autism training which is mandated isn't even happening consistently.  What does it all come down to? I have an answer, but it's not PC.

How the heck will we include the most severe students if we don't even give them comprehensive tools like sign language, PECS and behavioral training? The answer: we'll pretend we did. We put them out in a self-contained classroom or a general education setting and pray for divine intervention. One day, we'll be right back in that CCC discussing suspensions and change of placement. It's not good enough. Sorry, Indiana, but you are flunking out in special education.

Then to hear things from so many professionals and even advocates like "it's happening everywhere!" as if that excuses our failure to make it stop happening. Again and again, I've seen what true intervention can do for a child. I'm sick of being told it takes money! No, it really doesn't. It takes effort! If I can do it at home, you can do it at school for free.

Reblog this post [with Zemanta]

Wednesday, May 5, 2010

Best of Intentions

We seldom think of school administration as a high-flying career. One could easily imagine it as a thankless job with little reward other than the love and devotion of the families served by one's efforts. One could, but I don't. I've seen the hubris sometimes involved in the choice. There's a micro-chasm of power there, and sometimes, every now and again, individuals are attracted to that power.

In all my training as an advocate for special needs families and as a parent and employee of the school, I've been told again and again that the key to communication is knowing everyone in the room has the well-being of your child at heart. Employees of the schools, after all, went into this profession to help others. They love children. They want to help you.

How I long to believe! It just hasn't been our experience here in Perry Township. I have yet to figure out what the benefits are of being stingy with services and occasionally ignoring the law completely; however, there must be some kind of payoff. It happens far too frequently. Perhaps, it's prejudice.

I know Rain Man seemed cute and cuddly, but all too often disability is hard to understand and downright repulsive.  Put down the pitchforks. Wait till you see the reality of the "playing in feces" stage and tell me how you like it. I loved him through it because I'm his mother. Others aren't so motivated. There's some slobbering that can be encountered on the spectrum and lots of potty trouble. Students who vomit intentionally can and do happen. These things don't bother me because they are our kids. They belong to each and every one of us, and so do the hangups. It's our problem to solve, not theirs. It gets to some people.

The disabled also remind us of our own frailty. The fragility of the human body is a fearsome thing to behold. Perhaps, the negative experiences I've had with administration can be traced back to their own fear of mortality. Maybe it's all this complicated and this simple. I can't be sure, but my faith in the law and humankind is failing.

As a mom, I've seen too much to believe in the innate goodness of man. Fiscal conservatism often seems to translate differently to different people. To me, it would include not wasting money, directing it to services that are appropriate and valuable (like Special Education) instead of to the things that get us elected and do little good. To others, and if I'm honest, most others I've met who claimed that label, it is simply not having to pay for something that isn't your responsibility. That's where every man's conscience comes in and where I get nervous. My kid is no picnic and one day he'll be a very large, severely disabled man with two-fisted impulsivity issues. How will these people receive him? When his autism has drained me, where will he turn for care? And will those people be as unreceptive as his school has been? I'm not optimistic.

Inclusion in Perry Township is not done well or with much effort. Children out in the general ed. setting find very little compassion or understanding when they are inappropriately placed with typical populations, and I wish it was only the kids I worry about. I've encountered principals and teachers who just disliked a child for their autism, saying it's "an excuse". That principal couldn't understand that it was a reason, not an excuse.

RISE Special Services has one separate facility for the severely disabled student who can't go to their home schools, and I'm seeing the push. The end of that safety net for all involved nears by the day. Parents don't know it's there because they aren't told. When something goes horribly wrong in the home school, they may find out by word of mouth, and then it's a fight to get them in there. Parents who need this facility and ask for it are told they are "warehousing" their kid. However, that same kid may have just arrived from an environment where he was strapped down all day as my son was, and then they tell me I'm ruining his socialization. Please.

Instead of comprehensive intervention, preschoolers are directed to satellite programs with little training for the teachers trying to run them. Are there good teachers? Absolutely. They came that way. The township had nothing to do with it, and those teachers do not get the support or supervision they need from trained and competent administration. Often, the administrator has less clue than the teacher! Students in that separate facility are frequently farmed out only to return again when it was too dangerous to keep them out with typical peers. Many continue through their home school and age out of inappropriate programs. Thus, the population of that school diminishes each year, and the law suits abound.

What does it all mean? It means that we will shortly have blanket inclusion in the townships, and the choices for parents who have children who get violent during melt-downs or self-injure will get limited to keeping them home for school which limits them further to five hours of very expensive schooling per child each day. There will be incidents. Someone will get hurt. Where is the difference there with institutionalizing the mentally ill? Where is the fiscal conservatism in pushing the severely disabled out of the schools altogether to educate them at home? 

Currently, Perry Township has three environments for special education; general ed. classrooms, satellite classes located at home school locations, and Rise Learning Center, a separate facility focused on comprehensive intervention. If all those fail, you have the option of home-bound instruction.

Someone, recently said to me proudly of Indianapolis Public Schools where inclusion is the only option, " The disabled kids are there, and everyone just had to deal with it." That about sums it up. Yet, IPS doesn't have a spotless record or a good reputation. Could it be that they are using inclusion badly just as we are? Throwing autistic students into the population and saying, "Go!"is not inclusion. Inclusion involves peer education and social supports. It involves intervention and accommodation. Further, sometimes those things aren't enough, and we end up warehousing the child in an inclusion classroom.

Perry Township has got to get a hold of itself. Nothing changes, unless we change it. Parents have to organize and get involved. Learn about real inclusion and the options available to your child. On the other hand, I hear Johnson County is nice. Plenty of my acquaintances have taken that option, just move.

Reblog this post [with Zemanta]

Sunday, May 2, 2010

Oops, We Did It Again

Perry Meridian Middle School in Indianapolis and RISE Special Services have done it again. The story found here at channel 6's website charges that teachers have once again used bad methods to correct good kids. There are better ways to correct behavior, but the Powers That Be don't seem to know it.

Documentation. Documentation. Documentation. To change a placement for a student or start an intervention of any kind, a family needs to be able to produce raw data on that student. In the absence of data, the school can be forced to comply with the request. Within the townships, there seems to be a standing policy to avoid documentation of behaviors. Why? Because a more restrictive environment is costly? Perhaps. It could be laziness. It could be inattention to detail; but, whatever the cause, it's pervasive.

The Director of Special Services has repeatedly denied the consideration of cost at case conference committees discussing placement. He has also discussed at length the 20,000.00 per child cost for sending students to RISE Learning Center in Perry Township. When requested, parents have been told on many occasions that the 20k price tag cannot be, or simply has not been, itemized to determine what the facility truly costs line by line. Some parents charge that it shouldn't be that high. The cost of a satellite classroom is a comparable 7,000.00, and GenEd settings cost even less.

School staff are blowing the whistle in all the townships, telling others that they have been told RLC is not an option for new students. Preschoolers are directed to the least restrictive setting automatically, however, no new students are assigned to the comprehensive intervention classrooms each year. As a parent, I can be my own source on that point. My son's class does not grow. I'd be overjoyed at that fact, if so many kids didn't pop up in bad placements every year. Putting a child in a less restrictive environment should be based on data that is routinely not done in the four townships. I believe some of this is cost cutting, but some of it is something else.

What does a separate facility do for students? Some will tell you they promote discrimination as surely as any segregated school ever did for African-American students. Some say it allows peers to avoid contact with disabled students and sets them up for prejudice. That could be considered true, if general education settings weren't appropriate for verbal, high functioning individuals. Children who need less intervention should ALWAYS be placed in these regular classes. Some would call it warehousing. That is a matter of opinion. I would call a bad placement with insufficient services warehousing, and through no fault of the schools that is exactly what is happening. They just aren't set up for the severely disabled.

What happens at RLC that is so different? Focused attention on behaviors and concentrated effort to make a child as academically and socially abled as possible with the intention of dialing back the intervention is the goal of that facility, which is one of two in the whole state. The goal should be inclusion, but including students without skills makes little sense. Satellite classes are understaffed and under trained in Rise Special Services Program which brings us right back to where this article started. OOPS.

We did it again.

Reblog this post [with Zemanta]