I wrote a while ago about the Engineer’s difficulties with hearing different letter sounds. It’s taken a while, but we’re finally getting part of the ponderous diagnostic system up and running. Next week, he has an appointment to start the process with the school’s Special Education system.
I’m a little conflicted. Our state mandates that all children may receive services if they are determined to be eligible by evaluation. That includes public, private, and homeschooled kids – and homeschooled is specifically spelled out. In reality, most people think of us as freeloaders. We’re opting out of the system except for the bits that we want. Worse, they view us as competition. We’re trying to take vital services that their kids desperately need.
It’s not Us vs Them
I feel bad about that. There’s no doubt that the special education system is underfunded, and everyone is fighting for their piece of the pie. For kids with special needs, that therapy might be the only thing that helps them succeed in school. It might be the only thing that helps them go on to have a good life, less complicated by disabilities. It’s a sticky situation.
On the other hand, my son is entitled to services because he has disabilities too. He needs services to succeed, just like those kids in the public school classroom. And by choosing to homeschool him, we’re actually saving the school money because we lessen the amount of services that he would need just to make it through a day in the classroom. I truly wish the system didn’t put us into them vs us mentality, because every child deserves a good education and the services to help them attain it.
Plus, we pay our school taxes just like everyone else and then pay for homeschooling on top of it. We’re paying double, so maybe that counts for something. (and no, homeschooling a gifted kid with learning disabilities is NOT cheap.)
False guilt does no good
I shouldn’t feel guilty. I probably wouldn’t feel that way at all if I hadn’t encountered the attitude before. They’re generally the same people who attack us for homeschooling because we’re abandoning ship instead of trying to fix the system. In their view, homeschooling is traitorous. We should be putting that vast, intense energy into advocating for change and fixing the system.
I’ve already come to the conclusion that I’ll be able to advocate for change after my kids are grown. Because right now, the majority of my energy is being spent advocating for my kids. I’ve been mulling over the concept of emotional labor a lot lately, and I’ve realized that parents of kids with special needs do an exponential amount of emotional labor and outright labor too. In fact, they do so much that their stress levels have been compared to combat stress levels in military personnel.
False guilt wastes energy on things that don’t help our family and actually harms them. If I feel guilty about advocating for services, then I’m not going to advocate as hard. I’m going to accept a “no” and give up. I’m not going to fight for my kiddo to get the help he needs.
Language reveals attitude
That word “fight” is something that I hear a lot from parents who deal with the school system. They use language that evokes a battle, and not a quick one. They speak of a long, drawn-out struggle to get their child what they need. It’s rarely a wonderful experience, and sometimes it even involves lawsuits and legal battles. An IEP is a legally binding document, and if the school violates it and refuses to follow it, sometimes there is no other recourse.
Sure, sometimes I hear wonderful stories about teachers who make life-altering changes and are a huge advocate for the child. Occasionally I’ll hear about principles who will go to bat for the family by fighting for additional services, transfers to schools with better options, or the full-time aids that the kiddo needs. Most of the time, it’s not as positive. Most of the time it’s a brutal fight against an uncaring bureaucracy just to get their child what’s specified in the IEP.
There’s this vast chasm between the spectrum of disabilities – for both adults and children alike. On one side, you have the obviously disabled. The physically disabled, who need assistance with obvious things. On the other, you have the invisible disabilities. The ones no-one can see unless you live it. Even those within the spectrum judge, because how could you be disabled if you can walk, talk, feed yourself, and do other critical life skills? How could my son possibly take resources that a more deserving child needs?
We need to stop thinking that way. It’s not about being more or less deserving – it’s about getting what you need to succeed. My son doesn’t need feeding therapy. That’s great! That means it frees up the resource for others who do. My son doesn’t need a full-time aide, because I am his aide. That’s great! (even if I do bemoan it a lot.) My work frees up the resources to help another child get the aide that they need.
It’s really back to the whole “fairness” argument. Fair isn’t equal, it never has been. Fair is everyone getting what they need. It’s not about special treatment either – an attitude that we often run into. It’s about helping children do things that other kids can do without assistance. Should everyone use crutches if one kid breaks a leg? No! That’s silly! Just like crutches, these accommodations should only be used by those who need them. And it’s the experts’ job to determine who needs them, not the outsiders judging us.
I’m hoping for the best. After all, we have a laundry list of diagnosis that make him an instant shoe-in. If the school system tries to deny his case then we do have an iron-clad legal case against them. Not that I want that. Not that we should need that. It’s just reassuring – knowing that they should take us seriously instead of dismissing us as homeschoolers.
I’m hoping my optimism will be realized. We’ll see.