“Even the NORMAL kids experience stress on the first day.”

The words hit me like a punch in the stomach. I had just asked why my child with a genetic deletion was pulled from the sixth grade orientation activities and put in a separate room with other students with special needs. The education specialist said my child seemed anxious. Due to his mental health diagnosis, he was pulled from these activities to alleviate stress.

This is exactly what I was afraid of. At my first parent meeting, I explained that I was fearful grade level educators would not understand the nature of an anxiety diagnosis and wouldn’t recognize the difference between avoidance and real stress. I was hurt and angry.

I believe what the education specialist meant to say was “typical kids.” Typical is the word that describes children functioning at grade level with no additional support. The opposite of typical is atypical: a more scientific and strategic word that describes children with learning differences. The opposite of normal is abnormal: a word avoided by people in the special needs community because it implies malformed. It was like someone labeled my beautiful, happy child “broken” or “unworthy.” My son’s next interaction was equally upsetting. I was beginning to see a pattern of underestimating my child’s abilities.

Luckily, incidents like these have been few and far between. Most of the educators we encounter understand my child’s needs in the classroom. Some have taken additional step to educate themselves on new breakthroughs related to his genetic deletion. But when faced with a person who is less experienced, what do parents do to remain in control and advocate for their child?

1. Remember this is about the Individual Education Plan (IEP) and Person-Centered Instruction. In short, this is not about me—or the teacher. This is about the educational needs of my child. It is not about what I want, but rather keeping the student in an inclusive environment that allows for the greatest assimilation of knowledge and understanding. As long as there is meaningful engagement, educational progress is made and the student is spoken to or about in the most respectful terms, it may be beneficial to let a new scenario unfold. Ask staff to lead with your child’s strengths, as opposed to deficit-centered planning. If language is indicative of a continued lack of respect or knowledge, it may be time to review other options.

2. Communicate frustrations quickly and considerately. Not all educators know when they say something wrong. Explain immediately when someone is using antiquated or insensitive language. This may vary based on cultural and regional bias. I have flown off the handle a few times when teachers use old-fashioned language, only to realize that their lack of understanding of what is politically correct today also comes with years of valuable knowledge that serves my child.

3. Don’t burn too many bridges because there are only so many ways to cross a gorge. Demanding a new situation is not always best. I admit, I researched educational alternatives after the “normal” comment, but I also let my husband step in with a fresh pair of ears to assess if the situation was as bad as I imagined. Yanking my child out of a school he wants to attend—and away from his peer support—seemed justified when I was angry. But my child is excited about his classes, and it would be tough to return if I later realized we made a mistake.

4. Own your emotions. I am still angry. I have a file of injustices in my emotional file cabinet and it is too easy to build a case against working with the staff. It’s called Confirmation Bias. When I’m certain an injustice exists, I begin collecting experiences that support my theory. Instead, I need to step back, acknowledge my anger, determine if it’s valuable and calm down before I move forward.

5. Bring in help. Sometimes it’s necessary to talk to a principal or case manager who may be able to interpret your concerns for the person who doesn’t understand your child’s needs. Outside opinions or experts from your child’s medical world may be valuable sources of information, and may carry more weight than mom intuition and parent research. A spouse or a friend can help keep you on task. If things escalate, consider contacting a school ombudsmen or private special education advocate. If an advocate is needed, the Law Office of Meagan Nunez offers a free consultation. Check Flourishing Families for more resources.

6. Ask your child what he wants. Self-advocacy is the most profound and effective advocacy. If a child has the intellectual ability to express his desires, he deserves to be heard. A typical middle schooler may beg his parents to let him handle it, so my child should have the same chance. Unless I am positive my child will not be well served in this situation, I owe it to him to ask his opinion.

7. Keep a journal. Even if the situation resolves itself, it is valuable to write down what happened for legal purposes, as well as for healing. It can also serve as a history of the failure to provide a Free and Appropriate Public Education (FAPE), should you progress to mediation or even litigation.

Please see Flourishing Families, the Resource Guide for Families with Special Needs for resources and parent support.

 

Emily Dolton is a local artist and mom of two boys, one with 22Q 11.2 Deletion.