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November 2012 / Bronx/​Riverdale Family / Brooklyn Family / Long Island Family / Manhattan Family / Queens Family / Staten Island Family

Accepting the diagnosis and services for your child with special needs

Don’t label my child

To observe your child lag behind his peers is a pressure-filled, insecurity-fueling experience. Every parent needs to be aware of the appropriate developmental milestones of children, for which there is a plethora of information.

Any child-care program worth its accreditation and its tuition should be monitoring your child’s progress through these milestones, noting any red flags in development and behavior, and reporting them to you, as the parent or caregiver, in a timely and professional manner.

Fear of labels

Rather than balk at the suggestion of having your child evaluated, though, understand that these professionals want not only what is best for their program, but also what is best for your child. So why do so many families hold off on having their child evaluated for fear that the child will be “labeled?”

The reality is that everyone is labeled something everywhere they go. Maybe you’re the so-called “funny” member of your family or the “tough one” at work. Of course, there is so much more to you than that. It is the same when your child is given a diagnosis.

If your child is displaying symptoms of autism, for example, but we called it “Puzzle-Head Syndrome,” does it change what your child’s struggles are? It’s so important to focus more on the goals that the evaluations outline versus the label. These goals will bring your child closer to age-appropriate levels.

Without accepting the diagnosis and services, your child will continue to struggle and will be labeled something regardless. Is it better for your child to be known as “the one who doesn’t talk,” “the kid who cries a lot,” or “the bully,” rather than get the help he needs?

Parents in denial

In speaking with a parent, a registered nurse who struggled with accepting her son’s diagnosis of mild-moderate autism, she confessed the following:

“I would have felt less scared and hopeless had they told me my child had leukemia.”

This sounded insane and awful to me at first, but then she explained.

Leukemia has a course of treatment that she could understand. And he could potentially be cured. I could see her point.

It’s interesting how, if a child has a cold, asthma, or allergies, we as parents are on top of it, making the doctor’s appointments, contacting every specialist, and filling the prescriptions.

So why is it that when our children display troubling behaviors, learning disabilities, or developmental delays, we hold off on having them evaluated and reject the services that are offered (for free, through the Board of Education)?

Many parents feel that it is a reflection of their parenting skills. Perhaps they feel a sense of insecurity about the time or opportunities that they can provide for their child. Maybe they blame themselves for an incident the child has endured.

Denial is what grows from such insecurity and is a common reaction to learning that a child will need special educational services, but the inaction of the parent far outshines the difficulties that the child is displaying. While it seems harsh, it is the denial that will have you judged as a parent.

Another concern of parents during the evaluation and diagnosis process is that they do not want their child to be part of the system.

The reality, though, is that if your child has a Social Security number, then he is already part of the system, a system that is designed and regulated to help your child achieve developmental milestones, age-appropriate skills, and future academic success.

The evaluation process is confidential and every report, consent form, and Individual Educational Plan is accessible by only the appointed parties involved in your child’s case.

Even if your child requires services throughout his educational career, goals such as college, future employment, and living independently are not unattainable simply because he has been evaluated at some point in his life.

Neglecting needs

An important consideration is that, prior to first grade, educational services are not mandatory, but if your child requires services after first grade and, as a parent or caregiver, you do not follow through, it could be considered educational neglect.

Section 1012 (f) of the Family Court Act identifies a neglected child as a child less than 18 years of age whose physical, mental, or emotional condition has been impaired or is in imminent danger of becoming impaired as a result of the failure of his parent or other person legally responsible for his care to exercise a minimum degree of care; in supplying the child with adequate food, clothing, shelter, or education in accordance with the provisions of part one of article 65 of the education law, or medical, dental, optometric, or surgical care, though financially able to do so or offered financial or other reasonable means to do so.

As an evaluation representative for a New York-based agency, I come into frequent contact with families who are in denial of their children’s developmental delays. At times, meetings have ended in threats, insults, and even tears. It is OK to feel discouraged, and it is tempting to feel like in some way you have failed as a parent, but it’s essential to shelve those impulses and take a more proactive approach to helping your child grow and develop.

The evaluation process is comprised of multiple standardized tests that determine the functioning level of your child. According to the New York City Board Of Education, a child must present with a 33 percent delay in one developmental area, or a 25 percent delay in two developmental areas to qualify for services.

By initiating a proper evaluation for your child, the worst thing that can happen is that your child will get the help that he needs.

For more information, visit www.nysed.gov.

Dana Connelly holds dual Master’s Degrees in Education and Special Education, working as an educational evaluator for a New York-based agency. She specializes in Applied Behavior Analysis and is the proud single mother of a 5-year-old boy.

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