If You Think Your Child May Have a Disability


Parent Principle

  • Often fidgety with hands or feet, or squirming while seated.
  • Having difficulty remaining seated when required to do so.
  • Being easily distracted by extraneous stimuli.
  • Having difficulty awaiting turns in group activities.
  • Often blurting out answers before questions are completed.
  • Having difficulty following directions.
  • Often shifting from one uncompleted task to another.

When you bring your baby home from the hospital—all peaches and cream and perfect—the last thing you may consider is the possibility that your infant may grow up and show indications of a disability. I know it never occurred to me. All I remember is the nurse handing me the most beautiful blond little boy and thinking that surely there never was nor ever would be a baby as wonderful and sweet as my Nickolaus.

But around the toddler years, Nick began manifesting some behaviors that seemed, well, different. Intolerant of change, unable to get a haircut, obsessed with his trains, and shy to incapacitation—these were just a few of the things I noticed. When I'd concentrate on the peculiarities of Nick, my family and I would assuage any real fears with, "Well, he's just a toddler!" or "He's going through his terrible twos." But deep down, I knew something different was going on in Nick's mind. He viewed the world around us with intensity unmatched by most children. He also showed fears unlike other kids his age. Cartoons that most children loved, like Power Rangers or Rugrats, disturbed my little sensitive soul. He'd run away from the television when characters appeared. The zoo—typically a fun outing for most families—caused Nick so much anxiety and fear that we had to leave.

But when I initially sought help in the form of a counselor, all she could say was "We'll have to wait and see." The "wait and see" she talked about was kindergarten. The litmus test, per se. Prior to enrolling Nick in kindergarten, several possible diagnoses were thrown around, but no one really knew what caused my little guy so much heartache each day. Was it ADD/ADHD? High Order Autism? Obsessive/Compulsive Disorder? What? Nick did not fit any of the disorders specifically. In fact, there were days when Nick was the most normal child on the planet.

School Daze    to top

The litmus test arrived, and we did, indeed, see Nickolaus experience difficulty in class. Outbursts occurred over sharing. He often refused to follow the teacher's guidance and perform tasks. The teachers all looked upon my sweet, sensitive child as a behavioral problem—when in reality, as we now know, Nick suffers from a Pervasive Developmental Disorder (PDD); he views the world differently. It's as if his brain is programmed for DOS when we all run Macintosh. But in the midst of constant calls from the teacher, I was at a loss for what to do and where to begin. I knew nothing about Special Education and the rights of my child and certainly had no idea those rights were mandated by law. I'd like to share, therefore, a brief overview of what I learned, offer some ideas about what you might do if you suspect your child has a disability, and show some components of the process you may undertake in determining your own child's rights.

Parenting Principle
A good place for parents to gather information concerning the Disabilities Education Act and resources about Special Education is the Web site for the Office of Special Education Programs at www.ed.gov/office/OSERS/OSEP/. Another great place to look is the National Information Center for Youth and Children with Disabilities at www.nichcy.org

Here a Disability, There a Disability    to top

First of all, just what constitutes a disability? I know that when I'd hear disability, I'd naturally think of dyslexia, a prominent learning disability, or envision someone in a wheelchair, a physical handicap. But the Department of Education recognizes thirteen specific disability categories—including visually impaired, learning disabled, orthopedically impaired, and emotional disturbances, among others—that qualify a child for Special Education services. Special education, in turn, is specially designed instruction to meet the needs of children and youth whose educational needs cannot be met with modifications of the regular instructional program. Federal law ensures that "all individuals with exceptional needs have available to them a free, appropriate public education that includes special education and related services to meet their unique needs.

Moreover, schools are required to seek out students with disabilities and accommodate those kids in the least restrictive environment, meaning a program that promotes maximum interaction with the regular school program in a manner beneficial to the individual pupil and pupils in the regular classroom.

On Your Mark, Get Set    to top

So now what to do? You think your child may have a disability and thus qualify for services, but how do you determine eligibility and take advantage of those services? Hold on tight, because the road to the services is like a cross-country run that starts out on the block of a track with the gun firing and keeps you sprinting for miles and miles.

First, your child may demonstrate a need for special services, apparent to the teacher, while in class. Or, the teacher, like in my son's class, may miss the clues and aggravate the condition. Regardless, what you should do first is contact your child's teacher and school principal and seek a referral for testing. Set up an appointment to discuss your concerns and ask at the meeting for testing to evaluate whether your child needs and meets the conditions for Special Education services. This initial meeting should begin a process called the Individualized Educational Plan (I.E.P.), a federally mandated procedure for determining services. Once you sign the paperwork for testing (you must give your permission) and undergo an I.E.P., your child is then protected by law. In fact, according to one Resource Specialist (Special Education teacher) with whom I spoke (but who chose not to be identified), "Once a parent has an I.E.P. done, we ask how high do you want us to jump and through what hoops."

Pop Quiz    to top

Testing in several distinct areas begins the I.E.P. Everyone from a school nurse to a speech pathologist to a psychologist to a resource specialist will probably perform some sort of test on your child—depending upon what you agreed to and signed for. For instance, you may not sign for audio testing if there is no good reason to suspect a hearing disability, but sign for academic and speech and language testing. Generally speaking, a battery of tests will be advised. Since the categories of testing also determine Special Education eligibility, it behooves you to undergo as many as reasonable. Any findings will probably fall under one of the following headings:

  • Developmentally Delayed
  • Hard of Hearing
  • Deaf
  • Speech/Language
  • Visually Impaired
  • Emotional Disturbance
  • Orthopedically Impaired
  • Other Health Impaired
  • Learning Disability (like Dyslexia)
  • Deaf/Blind
  • Multi-Disabled
  • Austistic
  • Traumatic Brain Injury

Let's Sit Down and Have a Chat    to top

Once the professionals complete the testing process, you will meet with all those people who tested your child and listen to their reports. This meeting constitutes the final stage of the I.E.P. You should be given a folder containing your rights as a parent and the rights of your child. The entire meeting must also be recorded (by hand is fine, but you must approve the minutes at the end). The testers should also give you a hard copy report of their findings. A number of items make up the final I.E.P. and, again, must be included. They are ...

  • Statements of the child's level of educational performance.
  • Statements of yearly goals and short-term educational objectives.
  • Those individuals responsible for helping to accomplish the objectives.
  • Criteria and evaluation procedures for measuring the achievement of the educational objectives.
  • A statement of the specific Special Education programs and the related services needed by the student, and the degree of participation anticipated in the regular classroom
  • Projected dates for beginning services and how long the services should continue.

Hard to Hear the Truth    to top

Participating in an I.E.P. is not an easy endeavor. As a parent who recently underwent the process, I can tell you firsthand that there were moments when I felt like crying. Although my son's team did an excellent job of detailing all the good things about Nick, it was not easy to listen to the difficulties my child encounters in the classroom. In Nick's case, it all came down to communicating with peers, but for another student the problems may be academic or auditory or something else entirely. No matter what the problem, you need to go into the meeting knowing that things will be said and documented that are difficult to swallow—all about your child, your baby. Please know that the intent of the meeting is to provide the best educational environment for your child's exceptional needs. With that idea in the forefront of your mind, suffering the slings (unfamiliar with this expression?) may prove (a little) easier.

That's not to say that you must agree to every recommendation from the team either. If you disagree with a report, say so. If you don't feel comfortable about implementing a recommendation, don't. First of all, you're the boss. It is your child's life. Moreover, if you refuse a service today, you still have the option any time in the future of accepting the recommendation. Remember the previous comment from the resource specialist about jumping through hoops? Good. Because only you really know your child's limitations and strengths.

Let me give you an example from my son's I.E.P. Several recommendations were made including some speech therapy, communication therapy, occupational/orthopedic therapy and even adaptive physical education. The speech therapy and communication therapy made sense to me. Nick needed tools to use to communicate with other students properly. The recommendation for work in Nick's fine motor skills overseen by a orthopedic specialist also seemed appropriate as he did not hold his pencil the same way as the other kids. Though the problem did not prevent Nick from academic accomplishment now, it may later. But when a few members of the team talked of an "unusual gait" and recommended adaptive physical education, I balked. First of all, no scientific testing backed up the report, which was only based on a few observations. Moreover, I knew my child could throw like a major pitcher, climb like a monkey, and run like a gazelle. He did not suffer from any physical limitations that might warrant separating him from "the least restrictive environment" and pulled weekly into another PE class. I, therefore, refused to allow adaptive physical education to occur in my son's individual plan.

Where Do We Go from Here?    to top

Assuming your child does qualify for Special Education services, you and the team determine a specific course of action—everything from instructional plans to room modifications. In Nick's case, for instance, we determined that the classroom teacher should confer with the speech pathologist on a weekly basis and implement activities and learning games within the regular classroom to help Nick better communicate with his peers. The pathologist is obligated to teach the kindergarten teacher the activities to use in her regular class. The teacher will then modify the activity to fit her lessons. Again, the course of action an I.E.P. will yield in your child's case will probably incorporate something else entirely. Each child is different, after all, and that is why the program is termed an "Individual Education Plan."

From here on out, you basically call the shots concerning your child's education. If you find yourself unhappy with the plans made for your exceptional child, contact the school principal and request another I.E.P. The best thing you can do for your child is to arm yourself with information about his or her specific needs and exceptional nature. Also, check in with your child's pediatrician and share your concerns. Medications may play a part in the diagnosis and only a medical professional can give you proper input and prescribe them. Finally, good luck. The road may seem like an uphill battle, but the results garner relief in many ways. Through an I.E.P. you can begin to make progress and help your child.

Parenting Principle
If you believe your child is being discriminated against due to a disability and neither the school nor the school district seem to be complying with the law, you may contact Protection and Advocacy, Inc., for free legal help at 1-800-776-5746.

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