A New Kind of Adventure Begins

Hendryx and Lucille on a trip to Mackinac Island - 2023

A new adventure has begun for our family...we pulled both our kids from public school. Lucille will be in the inaugural class at a new private school and Hendryx will be homeschooled. I honestly can't believe it myself. If you told me last year at this time we would be doing this, I would have laughed...or cried??? Yet here we are living out the absurdity of life about to set off on maybe our most exciting adventure to date.

But first, let me share how we find ourselves on this uncharted path.

Our son Hendryx is neurodivergent and requires additional interventions and supports in school. By federal law, public schools are required to provide him those accommodations and services under IDEA, or the Individuals with Disability Education Act. This guarantees he will receive a free and appropriate (and later added, "ambitious") education (FAPE). In Colorado, we worked with the school team to build a very comprehensive individualized education plan (IEP) for Hendryx, one that was tailored to his specific needs. When we moved to Midlothian, Virginia we made the assumption that Hendryx's IEP would move seamlessly with us, as it is a federal program. You know what they say about assuming...

This new school team, despite having just met our son, started disassembling his previous IEP immediately. The school physical therapist claimed he did not need physical therapy despite his inability to move his body like his peers on the playground, classroom, and in P.E. The school psychologist expressed how she did not have the time to address Hendryx's executive functioning deficits because she had a caseload that covered a high school, middle school and two elementary schools in the area and she had to prioritize the students who had "real" psychiatric needs.

 
This prioritization of county shortages over Hendryx's needs put us in a very uncomfortable position. On the one hand, we empathize with the real issues of understaffing, lack of funding, and overworking our schools' teachers, therapists, and staff members. Even such, we don't want these issues to get in the way of our child accessing his right to education like any other child in the United States. Against our better judgment, we ultimately acquiesced and did not fight to keep his physical or psychiatric therapies. Instead, we concentrated our efforts on keeping his one-on-one aid that would be the linchpin to his educational attainment.

Having an adult aid in the classroom with a child is a slippery slope with potential pitfalls in social skills acquisition and creating arrested development. Even so, our original IEP team in Colorado saw the benefits far outweighing the negatives if utilized properly. We designed a role that would help Hendryx overcome his slow processing speed by writing down instructions, breaking down directions into shorter, manageable chunks, and using repetitive language. He/she would help build executive functioning skills by creating routines to follow, helping transition him to non-preferred activities, and helping him stay organized and accountable for his school materials. The aide would work with all his specialists and therapists to bring those activities into the classroom so he could practice them over and over. This person would foster inclusion by making sure Hendryx could participate in all of the classroom/school activities and interactions with peers creating a classroom culture where all kids benefit from one another. This plan was a solid one, one where Hendryx truly would receive an education to support his needs.

 
But we weren't in Colorado. We were now in a state and school where paraprofessionals or classroom aids were used very differently. In Hendryx's first year, not only did his aid do none of the above, she was constantly pulled to different parts of the school to help fill in gaps. No one informed us this was happening, we only found out through my own observations when I would volunteer in the school. We addressed this with his IEP team and also made sure to clarify the roles and responsibilities wordage in his IEP for the next year to make sure he would get what he needed. I also became certified to be a substitute teacher to help in other areas of the school so they wouldn't take his aid.

 
Despite having our expectations for the role laid out in a legal and binding document, the school still did not place the appropriate person in the role. This aid had no training from the school, didn't get training from his school therapists, and certainly had no prior experience dealing with the complexities of neurodivergence. Because of this, Hendryx's education certainly suffered, but even worse the school put him in danger. For example, because the aide did not follow a toileting protocol we created as a team, Hendryx would come home with open sores on his bottom that required medical interventions. Or, one time I was volunteering in the school I found Hendryx wandering the halls by himself past doorways to the outside where he could have easily left with no one knowing. I could go on and on with the data I collected from our time there on how they failed him.

Despite all of this, as we approached his IEP meeting for the 2023-2024 school year we were still trying to figure out ways to work with the school/county on how to find an aid that could actually institute what we had envisioned with our team in Colorado. I met with all of his teachers and therapists to talk with them to get their feedback and share our frustrations. Everyone seemed to be on the same page in feeling that Hendryx needed support and he wasn't getting what he needed in the current format. In speaking to one teacher, she shared she would be happy to advocate for Hendryx only up until the point she felt like she would be fired. Certainly not a good sign of things to come.

 
A few days before his IEP meeting, we were sent a draft of his IEP for '23-24 school year. Instead of trying to find a qualified candidate to get what Hendryx needed per his IEP and what we were hoping to work on collaboratively, they decided to entirely axe the role from his plan. Shocked is an understatement of how we felt. I would never have guessed that their solution to the problem would be to forgo it entirely. Not only that, the draft IEP they sent to us omitted and misconstrued his data to better tell the story of how he no longer needed an aide. We know this because we go through his IEPs line for line.

It was so devastating to think that they cared so little for our son and were willing to stoop to such low levels to get what they wanted. We lost all trust at this point and knew that we would have to find another path forward. We did speak to several lawyers who were confident that we had a case, but only to be reimbursed for private school funding. Unfortunately, there are no private schools in this area for a kiddo like ours who just needs additional learning supports so that wasn't an option. We did discuss if we could fight to change the system itself and the news was bleak. For those kinds of cases, parents in the state of Virginia only win 4% of the time. Needless to say, we did not like those odds.

 
As this was going on for Hendryx, we also learned Lucille was struggling in school. She seemed to be having a hard time with math and her grades reflected that. After meeting with her teachers we decided to actually move forward with assessing her for inattentive ADHD, something that is commonly diagnosed around this age and grade level for girls. All of her scores confirmed that she did have inattentive ADHD so we started her on a medication and met with her teachers again to see what kind of accommodations would help her learn. In this meeting, her teacher told me that he would not, in fact, support any accommodations for her because this was not a medical issue, but a choice she was making. He just needed to have a one-on-one chat with her because that was the "art of teaching." This is what would help her, not more time on tests, a quiet place to work, or any of the well-established interventions for her DISABILITY.

 
If I had worried before we were making the wrong decision, I no longer was. We were now going to pull both our children out of this school.

So here we are, on a path less traveled, which quite frankly is usually my favorite kind. So despite still having quite a lot of pent-up anger and resentment at finding ourselves here, we are going to do our best to move on and Explore, Dream, Discover...

Allyson 

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