“Making Special Education Actually Work”

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Emotions Part 4 – Students

In the last three posts, I discussed the emotions of the adults involved in the IEP process, not because the adults are the most important, but because they are the most responsible. How the adults in the situation choose to behave and the decisions they make affect the course of the lives of each individual child who requires special education forever. And, I really mean forever. 

No child is served by ignoring how the special education process directly impacts him or her. In fact, the impact that many of the decisions made by the adults in the IEP process have on children is required under the law to be measured. Measurable annual goals, as required by 34 CFR 300.320(2), look to determine whether the interventions and approaches decided upon and agreed to by the IEP team resulted in success. For the most part, the law is very student-centered.

Assessment can be a very grueling process for a child, particularly a young child. The nature of the suspected disabilities being assessed also plays a role in just how much standardized testing a child can tolerate in one sitting. Children with low motor tone can fatigue easily when being asked to perform paper/pencil tasks. Children with severe attention deficits can’t stay on task more than a few minutes at a time. Children with autistic spectrum disorders often have a hard time with the fact that the testing is not a normal part of their routine and the disruption to their predictable schedules can sometimes be enough to provoke non-compliant behaviors or tantrums, compromising the assessment process altogether.

By and large, children do not want to be disabled. The severity of the disability and the cognitive abilities of the child both impact the degree to which the child responds aversively to being “different” from his/her peers. Children with low cognition may not really comprehend just how different they are.They may come to terms with their circumstance rather quickly, regardless of whether they fully understand their situations or not.

I once worked as a job coach for developmentally disabled adults, providing supported employment services. One of my consumers was a fairly capable man who lived on his own in an apartment and had a full-time job working maintenance at a local driving range. He was very mildly cognitively impaired. He suspected that he had been brain injured in vitro during an incident of domestic violence, as his father regularly beat his mother throughout their marriage, including when she was pregnant. We were talking about life in general one day and he revealed this fact to me and the fact that he sometimes wondered what he would have been like if he hadn’t been disabled. He shrugged and summed things up by saying, in so many words, that he’d probably be living in his own place and working a full-time job, so really he didn’t think he had ended up in too different of a situation than where he would have otherwise ended up. I thought what he said was brilliant.

One of the attorneys I work with told me of a friend of his whose son was born with Down’s Syndrome. Intervention had been so successful for this young man that he lived independently, had a job, and easily accessed public transportation and all the entertainment and cultural enrichment opportunities that exist in the Los Angeles area. He could be frequently found taking the bus to work or some local attraction or point of interest. He was so confident in his abilities and proud of his own personal growth that he would tell people that he “used to be retarded,” judging himself against his own personal accomplishments more than anything else. What an example! 

But, I’ve also worked with kids who started out with learning disabilities that went unserved for years only to develop serious emotional health problems after years of academic failure. These feelings of low self-esteem bled over into other aspects of their lives, undermining their friendships, family relationships, and responses to life in general. 

A learning disability is quite unlike a cognitive impairment. People with learning disabilities have normal to above-average IQs. They just have a hard time processing certain types of information. A visual processing disorder means the person has a hard time making sense of what he/she sees. An auditory processing disorder means the person has a hard time making sense of what he/she hears. That has nothing to do with intelligence.

When perfectly intelligent children fail at something that other perfectly intelligent children can do without even thinking about it, it can make them feel bad about themselves. They often don’t want other people to know about their disabilities. They’re embarrassed by their shortcomings. Parental attitudes about these kinds of things can have a huge influence on how the kids respond.  Parents who are more interested in “keeping up with the Joneses” rather than true quality of life are more likely to be ashamed of having a child with learning disabilities than parents who don’t.  Parents who are constantly worried about what other people think can do a lifetime worth of harm to a child with a disability. But, I know many perfectly grounded parents who have made it perfectly clear to their kids that they love them no matter what and the rest of the world can go jump in a lake for all they care and their kids are still emotionally hung up over being “different.” 

Age has a lot to do with this, too.  Younger children are more forgiving and the younger kids are, the less they all know and the less children with disabilities (particularly “hidden” conditions like learning disabilities) appear to be different from their peers. But, as children get older, the expectations placed on them academically and in terms of social sophistication increase. The kids with disabilities will start to lag behind their peers in some ways and the gaps will start to widen.  It doesn’t take long for kids to realize that this disparity is happening.

If the friendships formed in the early years have been nurtured and fostered into a healthy support system, the children with disabilities are more likely to continue to be accepted by their peers for who they are.? But, kids who end up moving away or who never really formed solid friendships in early childhood (which really speaks to the degree that the adults in their lives facilitated their friendships in a healthy way) can end up losing their friends as the differences become more apparent.

It is common for children with disabilities to feel like their lives are spiraling out of control. If the adults involved in their lives can’t achieve a collaborative energy amongst themselves and there are evident disputes amongst the adults about how the child’s needs can best be tended to, that feeling that life is in an out-of-control tailspin is greatly heightened. Children rely on the adults in their lives, particularly their parents, to be their rocks and foundations.

How issues are approached is vitally important. I absolutely hate going into situations where justifiably frustrated parents have hired attorneys to take their school districts to due process and the next day the kid goes to school and tells his/her teacher off, ending with “My parents are going to sue you!” That helps absolutely nothing.

Because the decisions adults make will change the course of a child’s life forever, when IEP teams are working together well, I believe it’s important for the children to sit in on at least a part of their own IEP meetings. As they get older, it’s important that they participate as members of their own IEP teams. 

Parents have to be careful with this, though. If the purpose of the IEP meeting is to resolve disagreements about what should be in the IEP, it can be upsetting to children to be present during those discussions. It depends, though. I’ve seen various situations over the years where it was appropriate to have the kid there to settle the dispute once and for all while in other situations, kids had been reduced to tears or their parents held back on advocating for what they believed in because they didn’t want to upset their children (and, in the latter instance, that was the whole reason the school staff had insisted that the children participate).

Ultimately, the adults involved have to remember than an IEP is all about the child for whom it is being written. Not only do the adults have to respect each other, they have to respect the child and how their decisions will emotionally impact the child both in the short- and long-term. The child may have to do something he/she finds unpleasant in the beginning because it will lead to successes that will ultimately allow him/her to feel good about him-/herself. It’s up to the adults to make sure that the proper supports are in place so that the child’s initial aversion to the task does not undermine the overall goal, which means being attentive and properly responsive to the child’s emotions.

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Emotions Part 3 – Administrators

When administrators become passionate about special education issues, very often their passions are driven by fiscal concerns and/or political ladder-climbing. I have encountered administrators who were more concerned about child welfare and the long-term consequences of the decisions being made than eliminating costs by refusing to educate children and guaranteeing their own paychecks. When I encounter these rare individuals, I practically drop to my knees and worship at their feet.

There are not enough people with integrity in public education administration and that is truly a crying shame. Those administrators who are trying to do the right thing are still burdened with cost concerns, however. It’s how they respond to those concerns that generally defines who is a “good guy” and who is not. A good administrator tries to figure out how the agency will pay for an educationally necessary service, not whether the agency will pay for it (which is largely based on an analysis of what the risks of getting caught breaking the law and going into litigation might be).

When administrators come to the table, it is cost considerations that are often weighing most heavily on their minds. Most school boards, it’s safe to say, are manned by people who are not professional educators. Many are just people trying to get a toe-hold into politics. They understand special education even less than they understand regular education. They are looking at the overall costs of running the agency and, as a board, make decisions that influence the way things are done all the way down to the classroom, usually without appreciating the long-lasting impact of their decisions.  As Mark Twain once said, “In the first place God made idiots. This was for practice. Then he made School Boards.” (Following the Equator; Pudd’nhead Wilson’s New Calendar)

These are the people that agency administrators – good or bad – have to answer to. Over time, it can become more and more the case that an administrator’s job becomes about cow-towing to the board than examining the impact of policy decisions on actual children. In other instances, people go into administrative positions because they have seen children as nothing but numbers from the very beginning. It’s the nature of a bureaucracy to evolve into this kind of machine and attract people who are just looking to be cogs in that machine in exchange for a paycheck. When you see the salaries that top administrators get paid, you realize that we have created a system that gives a financial incentive to people to look at children as numbers rather than as our future.

You can easily end up dealing with a very powerful “not out of my budget” mentality among the higher ups in the administration. The problem with this kind of thinking is that public education is just one facet of our society. When we look at the over-arching entity that we often refer to as “The Government,” public education is just one component of it. The preventative steps that could and should be funded at the K-12 level are far less costly than dealing with unresolved issues throughout a person’s lifetime at taxpayer expense after he/she exits the K-12 system. But, shortsightedness is aplenty in public education and parents need to recognize that the walls that administrators may put up are often deeply rooted in this sort of mentality.

Parents and school site staff have to deal with different emotional responses from administrators. Parents will see some administrators as indifferent, insincere, or conniving. Sometimes those perceptions are accurate. Often times, however, administrators are maintaining poker faces and watching to see the direction things move in so they can plan their next steps, regardless of their intent. Even the ethical administrators have to walk a fine political line that often requires a somewhat noncommittal approach. 

The good administrators know they’re going to have to sell the idea of providing a unique service that costs money to their board and even though the law puts the responsibility of determining IEP content in the hands of the IEP team, most boards would have conniptions if an IEP team actually committed the education agency to a costly service without the administrators first achieving board approval of the expenditure. That puts administrators in the middle of a very awkward situation.

Diplomatic administrators may suggest to the IEP team that the education agency members of the team “do some research” to {identify some options” and that the team reconvene at a later date to continue its discussions. Parents and teachers need to appreciate that the behind-the-scenes dealings probably involve the administrators trying to determine the degree to which their boards are going to support the most appropriate outcome. That said, parents in particular need to watch the nonverbal body language of administrators during meetings and try to understand where the administrators are really coming from. Sometimes suggesting that the team continue an IEP meeting under the auspices of “doing research” and “identifying options” is just a stall tactic and they’ve already made up their minds to say “no” to whatever is being requested.

The emotions of administrators are a trickier issue for the other members of the IEP team because people don’t usually climb that high up the political ladder by wearing their hearts on their sleeves all the time. Being a smooth operator is more likely to garner success than constant hysterics. That said, school site staff are more likely to see fireworks behind closed doors without parents present than would be seen if the parents were around. 

I spoke once to an occupational therapist who ended up quitting her district job and going into private practice because she got sick and tired of getting screamed at (literally) by the district’s director of pupil services for actually pointing out when children had apparent visual processing disorders. This particular director of pupil services (who was finally asked by her employer to leave after decades of tyranny) was worried that any reference to visual processing deficits would result in parents asking for vision therapy services, which this particular administrator didn’t believe in and didn’t want to pay for. During the IEP meetings, this administrator would just sit at the table turning shades of purple and red while saying “no” and making excuses or just flat out saying “we’re not going to even consider that.” Behind closed doors, she would verbally abuse her staff for any suggestions they made during the meetings or statements they had incidentally made to parents that “put ideas” into the parents’ heads about what they might ask for.

Different from teachers and school site staff, high-level administrators have power and that changes how they respond emotionally to situations. Parents can become frustrated and distraught because they feel powerless in the IEP process and their children are suffering.? Teachers can become frustrated and distraught because they are sandwiched between parents who are turning to them for answers and holding them to very high expectations and administrators who are expecting them to follow internal processes and procedures that might not actually support what it is they need to do, leaving them caught in the middle.  That’s a powerless feeling, as well.

Administrators are sandwiched between IEP teams and school boards, the first asking for things and the other often trying to prevent expenditures. That’s the hierarchy regardless of an administrator’s motivations or intent. The difference is that most administrators have gotten fairly accomplished at dancing around the issues and finding ways to push through the things they want to see achieved and saying “no” to things they are less inclined to support. More so than parents and teachers, administrators’ personal opinions can and do influence outcomes. This can make them arrogant and full of themselves if they aren’t very nice people. Power can easily corrupt.

Parents, teachers, and administrators all need to work together collaboratively in order for special education students to be appropriately served, but without understanding and respecting the pressures and feelings of all the different team players, that just isn’t possible. You have to keep your brain turned on and your eyes and ears open at all times. It takes sustained effort, but it’s worth it in the end.

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Emotions Part 2 – School Site Staff

Parents are not the only ones who have emotional reactions to things that happen in the special education process. Special education is a very complex undertaking that involves a lot of people, each with his/her own perspective.

Teachers and related service providers (speech-language specialists, occupational therapists, etc.), being in the trenches as it were, are the people most in a position to see the educational impact of a child’s special needs first-hand. What they don’t know can hurt a child.

Parents who jump to blaming teachers and providers without considering all of the factors that these professionals have to deal with, however, don’t help the situation. That isn’t to say that teachers and providers are without responsibility and shouldn’t be held accountable. But, things have to be done the right way.

There’s usually a whole lot more going on behind the scenes beyond the control of the teachers and related service providers that parents don’t know about or understand. Many parents may look at teaching and professional staff, as well as school site administrators, as having a lot of say in how things go down, but the truth is that their effectiveness is also influenced by internal agency politics that start at the top of the agency’s administrative hierarchy and trickle down into the classroom through bureaucratic channels.

What teachers and related service providers are prevented from doing by the internal politics of the agencies they work for can also hurt a child, and most teachers and providers who find themselves in these kinds of circumstances are sickened by them. I’ve spoken to many people over the years who left the teaching profession because they were unsupported by their administrations, were denied the tools they needed to teach all of their students (particularly those with unique learning needs), and were told not to say anything to parents or make waves lest they find themselves unemployed. This is entirely unacceptable on a variety of levels, not to mention unlawful.

In many of the difficult instances I’ve seen, teachers and related service providers have not been properly trained on what to do and/or have had critical resources withheld from them by the powers that be.  When parents understand that teachers and service providers are usually jumping nervewracking hurdles within their agencies behind the scenes, a more constructive and collaborative way of working together can be developed and the professionals can come to regard the parents as resources rather than additional obstacles.

Teachers and related service providers, like parents, need to check their emotions at the door when it comes time for meetings with parents and co-workers. I once attended an IEP meeting for a little girl who was being raised by her single dad and the little girl’s teacher, as it turns out, had a mad crush on the dad. This same teacher was actually a pretty decent special education teacher in terms of her caring for her students and how effectively she communicated with them. But, the school district she worked for had trained its special education staff incorrectly on how to write IEP goals, resulting in IEPs filled with nonsensical gibberish. 

The exasperated father kept going back to her asking for clarification, which she was more than willing to oblige, and calling new IEP meetings to better describe the goals without really getting anywhere productive. As a professional person, he knew what kind of standards he was held to when it came to goal-setting and he just couldn’t fathom his daughter’s IEP goals. 

I wrote a letter to the district explaining why the goals were completely unacceptable and an IEP meeting was again called to address the goals. He and I went to the IEP meeting where this teacher, who had tried so hard to please this frustrated parent using the knowledge and information she had, bawled uncontrollably throughout the IEP meeting.

The teacher took the parent’s hiring of advocates to address the goals she had written as a personal attack, despite the fact that the real failing was in the way the district had trained her to write the goals and not something that we’d ever blamed her for specifically. Her sense of rejection was only further amplified by the fact that part of her motivation in working so hard with this parent was because she was attracted to him and, clearly, if he had hired a quasi-legal representative to respond to her efforts, her affections were not?being returned.  It was one of the most uncomfortable IEP meetings I’ve ever attended.

That certainly doesn’t happen to me every day. But, I’ve gone to a number of meetings where teachers or service providers were defensive, rude, condescending, and inappropriate because they were bad people doing bad things. I went to a meeting once where a mean and nasty speech-language pathologist had produced a very poor assessment report on behalf of the district that failed to include any subtest scores, making it impossible to see whether the child had demonstrated subtest scatter (subtest scores that are not close together, indicating relative strengths in some areas and deficits in others, as opposed to the subtest scores more or less being about the same regardless of the areas tested). When I asked for the subtest scores, she sneeringly advised that she couldn’t provide them because she had shredded the assessment protocols (the booklets in which the student’s actual answers and scores are recorded). Shredded them!!!

In California, unlike many other states, assessment protocols are considered part of a student’s records and, therefore, must be maintained as such (meaning that parents have the right to copies of them). Here, the assessor had destroyed a protected student record and for what She couldn’t prove that she had properly administered and scored the assessments in addition to the fact that she couldn’t really show how the child had performed on them. 

On behalf of the parents, I immediately disputed her results and asked for an independent educational evaluation (“IEE”), which is basically a second opinion by an outside assessor not employed by the education agency, at public expense.? The only way the district could have turned down the request would have been to take the family to hearing to assert the appropriateness of its assessments, which it couldn’t do because the speech-language pathologist had shredded the evidence.  The district sensibly agreed to the IEE.

The thing I hope you take from this posting is that teachers and service providers are people too. Parents and administrators need to understand this but nonetheless expect the utmost ethical conduct from teachers and providers as well as a legitimate interest in learning whatever they can to make sure their students receive meaningful educational benefit. 

Teachers and providers need to understand that protections are in place (see our first posting of November 11, 2008) to prevent them from being retaliated against by their employers for doing what they think is right by their students with disabilities.  Administrators need to be sensitive to the feelings of pressure they may be inadvertently placing on teachers and providers to say and do things that betray their moral judgment. This is the kind of thing that leads to teacher burn-out and prompts service providers to leave public education and go into private practice.

Teachers and providers need to have confidence in their own voices and insist that they be provided with the training and supports they need to do their jobs well. Disenfranchisement is the usurper of success and depriving our children of success is an unacceptable outcome for us all.

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Emotions Part 1 – Parents

Parents come in every flavor and how each of them responds to the demands of advocating for a child with disabilities varies from one to the next.That said, there are some basic assumptions that can be generally made about parents of children with disabilities and they are, as follows:

  • Parenting children with disabilities can be harder than parenting children without disabilities or, if not harder, hard in ways that most people could never even imagine. This can be particularly true for parents juggling the needs of more than one child, aging parents, and/or demanding jobs.
  • Parents of children with special needs went through pregnancy or adoption having the same dreams of success and happiness for their children that all parents have. It can take some parents a while to adjust to the idea that their children are disabled and the path they will have to travel is different from what they expected it to be.
  • No child comes with instructions and becoming a parent, particularly a new parent, involves a lot of figuring it out as you go. The frustration and feelings of inadequacy that often come with being a parent in general can be magnified when you become the parent of a child with a disability. You can end up kicking yourself much harder for your mistakes because more is on the line (or you at least perceive it that way).
  • That said, many parents get through the initial stages of worrying themselves sick and settle into a reasonably comfortable mode of having a pretty decent handle on things for the most part, getting occasionally derailed by arbitrary medical, educational, or other service issues that arise involving agencies responsible for serving their children’s needs. When that happens, these parents can become angry.
  • Being the parent of a child with a disability makes a person emotionally vulnerable. You can be reduced to feelings of frustration, fear, and failure in a nanosecond. When people actually step up and help you out, you can be so eternally grateful that you are brought to tears of relief.
  • Asking for help is hard for some parents. When they finally bring themselves to do it and they’re met with resistance or game-playing, they can become incensed. When they ask for help and are received graciously with understanding and integrity, they will often become the best players on the team and defer where appropriate to the expertise of others.
  • Disabilities that involve serious behavior challenges can turn an entire family upside-down. Parents of children with these kinds of needs are often exhausted, exasperated, and overwhelmed.

If you are a professional working with parents of children with disabilities, it’s important to take their feelings into account and truly respect them. Some of the ugliest behavior I’ve seen as an advocate has been public agency personnel mocking a parent’s emotional response to a difficult situation or using the parent’s response to discredit anything the parent has to say.

If you are a parent, realize that many people are uncomfortable with emotional displays and will use any emotional response you have as a justification to take you less seriously. Getting angry and blowing up at people almost never serves you. Crying during IEP meetings can be perceived as instability and weakness on your part and can cost you credibility.

When developing an IEP for a special needs child, parents need to go in and stick to the facts, treating the process like a business transaction. Speak from the heart and with good faith intentions, but remember that the purpose of any IEP meeting is to create the content of your child’s IEP, not belabor how certain people or events make or have made you feel.

If you fear that you’re going to break down or blow up about something, save it for later when you can write a to-the-point letter describing your concerns. If it’s that upsetting, you’re probably better off making the record anyway. Plus, when you deal with upsetting situations in writing, you can take your time and choose your words more carefully (which is important because written communication can become evidence under certain circumstances and you always want to think about how what you’ve written could be perceived by a Judge or investigator).

Additionally, when you’re exchanging communications in writing, the folks who are responding to you are more likely to think about what they’re saying before they go flying off the handle, too. In any event, they aren’t sitting across the table from you saying things that push your buttons and set you off.

Respecting the feelings of everyone involved in any collaborative process, such as an IEP meeting, is just common courtesy. Parents are usually the most emotionally invested members of the IEP team. After that, teachers who truly care about their students are usually the next most emotionally invested members of the team. Disrespecting their emotional investments in the child at issue is a mistake on the part of any of the other IEP team members. The emotional investments of parents and teachers in children with special needs make them more likely to come up with creative, appropriate ways to get the job done.

What are your thoughts and experiences on this topic? Post your comments and let us know.

If you advocate for a child with special needs, consider purchasing a copy of Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.

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This Blog’s Purpose – Parents & Educators Working Together

Hi! My name is Anne Zachry and I am the Executive Director of KPS4Parents. KPS4Parents is a non-profit organization that has been providing lay special education advocacy, parent training, public agency consultation, and paralegal services to special education attorneys since 2003. (For those of you wondering, KPS4Parents stands for Knowledge Powers Solutions for Parents.)

I have been with KPS4Parents since we first opened our doors as lay advocates, having worked for 12 years prior as a freelance special education lay advocate.? In my 17+ years advocating for children with disabilities and their families and building positive working relationships where I’ve been able with public education officials and attorneys, I’ve seen and heard a lot of things. I have perspective from both the public agency and the parent sides of the issues and have found myself standing in the middle trying to take care of concerns on both sides so that, ultimately, the child gets served appropriately.

For the most beneficial outcomes to be achieved, both sides have to work together. Schools need to understand that having a child with a disability is a very, very emotional situation for any family and parents need to understand that public agencies are fraught with challenges, some of them seemingly impossible to overcome, that interfere with the delivery of appropriate services to children with special needs. Some of the answers are easy. Some of them escape identification for years. Even once they’re identified, making them actually happen presents a whole new set of obstacles to overcome.

This blog is intended to inform and inspire you. Whether you are a parent of a child with special needs, a general education teacher, a special education teacher, a public school administrator, or you work for another agency that serves the same population in conjunction with or in addition to the public schools, the information you’ll find here and the insights you can provide will help you help us build a better tomorrow.

We promise you that our ultimate goals is to facilitate collaboration among all the stakeholders, but we aren’t going to sugarcoat anything. There are some serious problems that we have to overcome and some of them are very ugly.  You’ll find below additional information about Section 504 of the Rehabilitation Act of 1973 and the protections that parents, advocates, and educators have against retaliation in response to their efforts to pursue appropriate outcomes for children with special needs.

The first step in overcoming the obstacles we each face is to fearlessly reach out to each other and unite. When teachers fear for their jobs and parents fear for what their children will face at school if they dare say anything about a bad situation, public education becomes increasingly anti-child. We simply cannot have that. We will incur further economic hardship as a nation and will lose our souls in the process. Please read our additional content provided in the Downloads?& Links below to learn more.

Please also subscribe to our feeds so that you can remain informed and stay involved. We’re looking forward to the directions this blog will take us and having you involved as a member of our community.

Kindest regards,

 

Anne M. Zachry

Executive Director

KPS4Parents 

Downloads & Links:

504-protections

Settlegoode Appeal Decision