I try to be funny and encouraging and post about the little victories. But there are days when the grind that is parenting children with special needs is just overwhelmingly impossible. It doesn’t FEEL impossible, it’s like, actually impossible. How we make it to bedtime each day most often feels like it involved magic.

Now, we have the Covid-19 pandemic and the life that felt impossible has been replaced by a vortex of electric anxiety and fury. I am mad. Every. Day.

Do you know why? The schools.

I live in California. In our school district, we had the choice in August to keep our children home for the entire school year, or to send them back to campus. We didn’t know how things were going to shake out. Cases were blowing up! And I have 3 kids who need a 1 to 1 aide to keep them safe and engaged in their learning. Safe, as in, don’t let me kid run away into the parking lot or hit himself because he’s so frustrated that a friend took his LEGOs.

Yeah. I was not sending those children to the dystopian school of “Dune” meets “12 Monkeys”.

This is a very divisive subject and I am not here to argue keeping kids home vs sending them to campus. That’s a family choice. And this is mine.

It seems, from my own experience, that families of special kids are keeping their children home in a higher proportion to those with neuro-typical children. And that means that children who need the most in-person help, are not being receiving these services. Or, they are being offered a minimum of these services compared to when these kids were on campus up until March when campuses closed across the state.

In our school district, distance learning was offered for the entire school year of 20/21. We had to choose in August how we thought the severity of the pandemic would play out. And how we thought the schools would handle educating our children. As the mother of a 6th grader, a 2nd grader and an pre-k student, I am realizing the disparity of educational and therapeutic services being offered.

My eldest has been in a holding pattern for 5 weeks, waiting for his out-of-district placement to come through because the district has their own opinion about where he belongs based on his behavioral issues — issues that he had due to an inappropriate placement that stretched back to the summer of 2019 — when he was triggered by bullies and peers who would spit on him and threatened to beat him with sticks. Nice, huh? This is my sweet Aspie who uses baby talk whenever he talks to our pet cat and can tell you anything about dinosaurs or Godzilla and can draw amazing paleo art. He’s not hitting any of his academic benchmarks because they spent every day trying, and failing, to get him to be present in the classroom.

My middle child is in a general education classroom and he spends 5 hours sitting in front of a laptop doing Zoom School. He has a “break out” room where he, his teacher, his aide, or myself can elect to place him if he’s struggling to engage in learning. Let me tell you, he’s in that break out room half of his time. With autism and ADHD, he can’t sit through all of the assignments. He can’t absorb the verbal instruction offered by his gen ed teacher. His special education minutes, as outlined in his IEP, mean that he is to receive 55% of his education translated to him through a special ed teacher or therapist. This is not happening. Finally, in the 5th week of school, we received a package of chewy necklaces. There you go! That’s your OT services! Good luck!

For my pre-k child, his school did not even open their campus and they couldn’t figure out a safe way to instruct these children. Instead, they are being offered a paltry fraction of live education and therapies. There are two 15 minutes sessions with his teacher and then 5 or 6 videos that we watch. These “assignments” are about blue cars! Or building with blocks! Or watching the teacher read a book! I get that he’s 4 and that other peers might have intellectual delays that make these lessons appropriate. But my autistic child is very bright and doing 1st grade math. His delays are emotional and behavioral. So, what are they offering to help him? Not enough. I’m the one who’s regulating his behavior.

Yes, I chose this path. Yes, you can say that was my choice. But what is the district doing with all of the money that they continue to receive were they on campus?

It seems like they’re spending it on litigation.

My own peers, other parents of special children are each in negotiations with the district over failure to offer equal access. That might be for in-person education, for OT, speech, adaptive PE, or transportation to participate in on-campus learning.

We’re spending hours working with special education consultants, advocates and lawyers! Then we moan an rage to each other with what little energy we have left.

My most fervent wish for my kids, other than their physical safety, is that they don’t regress…more.

Ask around and every special needs parent will say, “my child has lost language”, “my child hits and throws the laptop”, “my child is anxious to leave the house! “

How are these children going to recover all of this lost ground when what they’re being offered for learning and therapies is just enough to satisfy the minimum requirements, or whatever they think they can get away with.

Money, money, money. The school gets the funding for my child and he’s not even on campus.

I could cry imagining how this is playing out is less affluent parts of the country, or in homes where parents aren’t educated about their child’s legal right to these services.

I know what’s going on. Not everything, but enough, and it makes me so furious and tired. That’s my covid state of being. Go to bed late, dream about the nasty emails I have to write, wake up and start the 360 degree spin move of fury on all of the fronts.

It is little wonder that I feel like a toilet paper tube with wonky eyes.