Shortly after my first child was born and we were still processing his Down syndrome diagnosis, a family elder said to me, “What you’re dealing with now is not different than what any parent experiences. You just got all of the let down and disappointment up front.”

Wrong. She was so wrong that I wish I could time travel and tell her just how ignorant and insensitive her sharing of false wisdom was. 

The start of a new school year is a fine example. My oldest is now 12 and entering middle school. His younger siblings are still in elementary school. The differences in their school experiences, and mine as their parent, are night and day. 

This morning it took an hour to coax my 6th grader to go near the building. It took the comfort of climbing on my shoulders for him to enter. It took the social worker rounding up his favorite friends to meet him at the entryway to get him to walk in. His brother and sister – I had to ask them to wait for me as they left the house with their backpacks, ready to go. I trailed them as they found their friends and begrudgingly let me take their 1st day picture. 

The differences in taking my tween to school and my 2nd and 4th grader to school are so drastic, I needed to follow up on one of my previous posts with: PARENTING AND CAREGIVING ARE NOT THE SAME – the back to school edition.

Parents prepare for school late in the summer. Caregivers prepare the year before. The IEP is adjusted.  There is the handing of the baton of the school teams. Caregivers attempt to set up meetings and acclimate their child to the next classroom/school/grade level. 

Parents pick up the school supplies from the list and call it a day. Caregivers look over the list to figure out what the student will actually use, consider adaptive materials to swap in, email the teacher to make sure what they are getting is OK, pick up multiple other supplies that will support the student’s learning.

Parents get teacher assignments and might be thrilled, disappointed or neutral, but know it will be OK. Caregivers anxiously await not just the teacher assignment but the special education teacher, speech language pathologist, occupational therapist, physical therapist, and support staff assignments. They know from experience that the wrong teacher can have devastating effects on the child that can lead to lost learning, anxiety, difficult behaviors, refusal to go to school, and more. They advocate that their child is paired with professionals that understand learning differences.

Parents are excited and nervous about the first day of school. They take pictures of their kids and send them on their way. Caregivers spend hours preparing for the first day of school. They do everything possible to get their child ready for another transition. They send emails detailing all of the things their child is unable to communicate. They are often in contact with the school throughout the day. They sometimes get calls to come in to assist with something. They plan how to best get their child into school – from transportation, to an entryway that is accessible whether physically, sensory, or both. They have social stories, apps, visual schedules, first/then boards, and more. They’re lucky if they get a chance to take a photo.

Parents worry about how their child is doing, they worry about bullying, school shootings, if they’re making friends, if they’re learning. Caregivers worry about all of those things too. They also worry about physical and sexual abuse. They worry that the IEP isn’t being followed. They wonder if the IEP has even been read. They worry that their child’s disability will make them even more vulnerable in the case of any emergency. They worry about their child eloping and going missing or getting hit by a car. They worry that their child will have no friends. They worry that teachers and staff won’t see their child for the amazing, brilliant person they are. They are all too aware of the implicit bias and ableism their children deal with everywhere they go. They recognize that Diversity, Equity, and Inclusion initiatives have yet to fully recognize that disability falls under DEI practices too. 

Parents hear from their children about what instrument they want to play or what elective class they’d like to take. Caregivers must often contact the school and request their child is included in music, plays, or anything extra inside the school day. They sometimes have to guess what their child might like and hope it works out. 

Parents sign their kids up for after school activities. Caregivers must move mountains just to find childcare. They’re tasked with making programs inclusive so their child can do something after school. They’re often turned away or just don’t have enough time or energy to follow through. So their child ends up at home while their peers are out and about.

Parents see their child gain more and more independence with each passing year. Caregivers see their child move closer to the edge of the transition cliff. From early intervention, to preschool, to grade school – it is hard. Then the tween and teen years hit, afterschool programs are no longer offered, and most students are able to go home solo. There are no supports. Adaptations and modifications are few and far between. If caregivers want their child to do something with their friends or peers, they have to do the work. Even for something as simple and seemingly inclusive as a non-competitive swim team, caregivers have to contact the organization, ask for modifications and adaptations, and if they get the go-ahead, the caregiver must find support staff and likely pay for it too. Caregivers are forced to either find a caregiver or be the caregiver. Equity and inclusion for our most vulnerable children is not a given. It is something we must advocate for, fight for, create, and often pay for. 

How do we support students and their caregivers? 

Caregivers needs at the start of the school year vary greatly. But one thing we certainly don’t need is for folks to gleefully ask us what we’re going to do with all of that “free time.” Sure, the question is well-intentioned, but this is triggering. Many of us haven’t had free time since our child was born. We’re not at home eating bonbons or binge-watching our favorite shows. We’re lining up medical appointments Tetris-style so our child will miss minimal school. We’re emailing teachers. We’re reviewing our child’s IEP. We’re fielding calls from the school. We’re sorting through stacks of paperwork. We’re hunting for support staff. We’re attempting to catch up on our own medical appointments. Some of us are savoring a moment to work with minimal interruption. We’re lucky if we can sneak out for some fresh air. 

When doing Diversity, Equity, and Inclusion work, we need to think of EVERYONE. Parent Teacher Organizations, clubs, sports, etc.  should consider accessibility at every meeting and for every function. From ski club to chess club to the latest theatre production – how can any child who wants to participate do so in a meaningful way, automatically? How can everything we do be inclusive and equitable for ALL? 

Until that starts to happen, DEI is anything but inclusive. 

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