Lightening the Invisible Load

Back-to-school season is more than new notebooks and sharpened pencils. For many children, it is a seismic shift, especially for children with intellectual and developmental disabilities (I/DD). For these kids, the start of school isn’t just a change in routine; it’s a gauntlet of sensory overload, social challenges, and emotional stress. The invisible load children carry can weigh them down before the first bell even rings.

Too often, these struggles go unnoticed. However, one thing is certain: parents are not bystanders. In fact, as Jessica Waizmann, Community Behavioral Services Administrator at Boundless, reminds us, “Parents are our kids’ biggest advocates.” You are the bridge between home and school, and the most powerful support your child has.

Summer days are fading away, making it time to shift our family routines to match the intensive structure of the classroom. For some families, these changes are minor, or they have been in the works for weeks; however, even small changes can trigger large amounts of stress. It is common to lose structure over summer break. According to Waizmann, “Some of our individuals experience skill regression. They may not be coming back with the same skill set they ended the year with.” Like any other skill, academic endeavors need practice to be maintained. This extends not only to schoolwork, but also to social interactions, classroom behavior, and the use of coping skills. To set your child up for success during the school year, set expectations early by adjusting sleep and eating schedules as well as engaging in activities that build tolerance for environmental and sensory stressors.

School environments are rarely sensory-friendly. Fluorescent lights, cafeteria chaos, and crowded halls can overwhelm a child who’s been in their comfort zone all summer. Preparing your child means more than buying school supplies. Start building tolerance for the things that trigger your child’s stress by going on intentional family outings, discussing what to expect, and rehearsing coping strategies in both calm and stressful moments.  You should work to reinstate structure through a consistent schedule. This should include regular bedtimes, wake times, and meals. Waizmann pointed out, “If you go from watching your iPad all summer to a chaotic school setting, that’s a huge adjustment.”

 “If there’s something unusual going on, make sure there is plenty of advanced notice” Waizmann suggested. For big events such as picture day, field trips, and assemblies, give your child a heads-up and plan for what they’ll need afterwards. Maybe that is quiet time, a snack, or extra reassurance; let your child decide. Just as you might take a breather in your car before coming inside after work, your child needs to decompress after long days as part of their routine. “Giving a little extra grace after school, keeping routines consistent so there is predictability in the home environment,” are some examples Waizmann gave of what that decompression might look like. She also encourages parents not only to set their child up for success in school, but also at home because ultimately, the structure at home, even on weekends, helps balance the unpredictability of school. As school starts, aim to keep your child’s daily routine as consistent and predictable as possible. Using visual or physical supports such as charts, visual schedules, choice boards, social stories, discussion and calming and coping activities can help make routines stick while also making them more enjoyable.

Other ways to prepare include having informative conversations and visiting new places in a controlled way. Take a tour of the school and meet your child’s teachers before their first day so that they feel more familiar. New classrooms, teachers, and peers all contribute to a child’s invisible load. Even for the seasoned student, it is hard when expectations change.  Larger age-based transitions, where time at school shifts from play-based learning to a structured approach, are even more challenging. “As kids get older, the expectation is you will sit in your seat for 45 minutes, attend to the teacher, and complete your assignment.” For children with I/DD, making these kinds of changes may require accommodation both at school and at home.

Parents’ impact doesn’t stop at the front door. Remember, you are the bridge between home and school. Many children with disabilities qualify for school accommodations such as ETR and IEP plans. When setting an accommodation plan, attend the required meetings and take the opportunity to share about your child, their behavior, and their needs. Bring your knowledge of your child and don’t be afraid to speak up. “If something doesn’t make sense, speak up. If you feel like your child needs more of something, don’t be afraid to request it,” Waizmann urges. Communication is key. Waizmann advises, “Encourage those points of connection with the school as much as possible, even if it’s just a once-a-week email touch base.” Other realistic methods of communication with your child’s educators include daily logs, monthly meetings, or apps like Class Dojo.

As your child’s primary advocate, you have the option to ask for the interventions they need, as well as request assessments and plans. “If there is an unmet need due to a diagnosed disability, that is a time to explore with the district,” Waizmann said. If you encounter roadblocks, remember, you’re not alone. Start with your child’s teacher, but reach out to special education coordinators, administrators, or even district advocates if needed. Sometimes, outside help from educational or legal advocates can make all the difference.

The ultimate goal isn’t just surviving the school year, but helping your child build the skills to speak up for themselves. Advocacy starts at home. Give your child choices, encourage them to express their needs, and teach them how to ask for help. “Empower your child to advocate for themselves and their wants and needs,” Waizmann says. When you listen and honor their voice, you’re teaching them that what they feel and need matters.

Transitions are tough, and for some families, they can feel overwhelming. However, you don’t have to walk this path alone, and neither does your child. By preparing at home, collaborating with your child’s school, and advocating throughout the process, you lighten the invisible load. Your engagement, empathy, and persistence can turn a season of stress into a foundation for success.

Listen to your child. Speak up at school. Build routines that feel safe and predictable at home. Most of all, approach the transition with empathy for your child and for yourself. The journey may be challenging, but with you on their team, your child can thrive.