Beyond the Label: A Parent Concern Statement for the IEP

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The following is a collaboration between a parent and me, which was sent to her child's school before an upcoming IEP meeting. It was added to her child's IEP verbatim under the Parent Concerns section. I have permission to post this. The first few paragraphs not only relay this parent's concern, but also those of most of the parents with whom I work.

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“Inclusion is a battle cry, a parent’s cry, a child’s cry to be welcomed, embraced, cherished, prized, loved as a gift, as a wonder, as a treasure.” – Marsha Forest

Before we discuss minutes or service models, I want to talk about impact. 

From infancy, children with Down syndrome face lowered expectations. Families are handed pamphlets instead of congratulations. Limits are placed before children even have a chance to show who they are. When communication is difficult, assumptions grow — that they can’t, that they are unwilling, that they will fail. School systems can mirror these assumptions. 

Labels matter. Labels strip away individuality and cause us to assume things that are often inaccurate. You can present any data, but when language like “unwilling” is used, it shapes perception, interpretations, and most importantly expectations for what a child can or will do. Expectations drive opportunity. 

Alex is in an inclusion classroom with strong, caring teachers who normalize the educational experience of children with disabilities. We appreciate that. Yet even in inclusive classrooms, labels from higher levels still occur. Children with disabilities are viewed differently. Too often, they do not hold full status in the classroom, instead, they are seen as visitors. Proposals to increase pull-out minutes reinforce that message. 

Raising a child with Down syndrome has been one of the most beautiful parts of our lives. Our daughter, Alex, is a curious, determined, intelligent, and creative child. She enjoys learning, reading, and engaging with others, and thrives when supported by people who believe in her. She is an observant, visual learner who benefits from manipulatives and “teach, don’t test” approaches to demonstrate skills not always captured in formal assessments.

The hardest part of raising a child with Down syndrome, in my experience, hasn’t been her developmental delays, fighting insurance, or navigating educational systems. It’s been the way society holds her down while all she does is uplift. How others, just by seeing her face, treat her as less when she’s so much more.

Last year, she took great pride in completing her first written assignment in the general education classroom using Clicker, demonstrating that with appropriate support and opportunity, she can achieve meaningful academic progress. We ask that the team presume competence in Alex and maintain high expectations. Her general education teacher is not expected to teach every skill, but to provide instruction from their expertise, welcome her into the classroom, and support her progress toward IEP goals.

True inclusion means presence, participation, access, and support alongside classmates every day. True inclusion happens when general education teachers and special education teachers collaborate, not when one carries the weight alone.

We believe and strive for her to have the opportunity to graduate high school, attend a

post-secondary education program, work in a field of her choice, and one day live

independently, with support in the community of her choosing. Alex will have a network that will encourage resilience and self-determination. We envision that the advocacy we do on her part now will encourage her to be a self-advocate and prepare her to benefit from supportive decision-making. We envision a team that fully supports and believes in our vision for Alex, and when things aren’t working, we work together to fix them.

Alex’s challenges with transitions to art, physical education, and music are related to fine motor, gross motor, and sensory needs associated with Down syndrome, not behavior. There are no outbursts, aggression, or unsafe behaviors. The main trigger occurs during transitions to specials and lunch, which are higher in sensory demands (noise, movement, unpredictability). These challenges are regulation-based and connected to the disability, not intentional misbehavior. Labeling these challenges as behavioral inaccurately shifts focus away from disability-related needs. Sometimes it takes longer than 10 minutes to enter, or she may avoid the class temporarily. These are adaptive responses to sensory overload or motor difficulty, not noncompliance.

Data shows Alex transitions successfully most of the time, particularly with supports such as visual schedules, peer buddies, first/then language, and adult guidance. Previous transition data should be considered in context: last year’s data coincided with her sixth 1:1 change; five of them were substitute teachers. This year’s data occurred a week after the fourth 1:1 change, all of which were substitutes. These are significant disruptions for a child who relies on routine and consistency. We want the team to recognize that these needs are disability-related and require accommodations and proactive support, not a behavior label.

Additional concerns: goals being too low-level, repetitive, or not ambitious enough for meaningful progress. Pictures do not help children decode words. It encourages guessing. Pull-out services for specialized instruction are causing missed instruction and increasing learning gaps.

Consistency of staff, high turnover of paraprofessionals/substitutes who don’t know Alex well. Fear that lack of training for paraprofessionals/substitutes leads to missed learning opportunities.

We are concerned about the IEP statement that says our child “requires instruction to be modified and presented in a format that best suits learning style in order to demonstrate skill mastery.” We respectfully request clarification and revision of this language.

Our priority is that instruction be adapted and presented in a way that is accessible (visual supports, technology, scaffolds, multiple means of engagement) so that our child can demonstrate mastery of grade-level skills. The word “modified” suggests reducing or altering grade-level content, which may unintentionally lower expectations and limit opportunities for inclusion, academic progress, and future access to graduation requirements.

We request that teachers, paraprofessionals, and administration receive training specific to supporting students with Down syndrome, including strategies for learning, augmentative communication, assistive technology, and sensory needs. We request consideration of an inclusion specialist/facilitator to ensure meaningful access to general education classrooms.

This specialist would work with teachers and paraprofessionals to provide strategies,

accommodations, and supports tailored to my child’s needs, ensure consistent implementation of IEP goals, and help my child access grade-level curriculum while fostering social engagement and self-regulation. Hearing services are currently offered virtually, which does not work for my child. We request in-person, direct instruction for hearing support to ensure effective learning.

As Alex's parents, we would like to be treated as equals and have regular communication

shared with us throughout the year via a daily communication log. These logs are also excellent tools for us to engage Alex in meaningful conversations about her day. For health reasons, we do not want Alex rewarded with food or snacks as encouragement to complete assignments, due to dietary restrictions.

We value the team’s collaboration in supporting Alex to reach her full potential and look

forward to working together to ensure her continued growth and inclusion.