So, this latest story about Disney and the change to the Guest assistance pass has been making the rounds of the interwebs. I have hesitated writing about it because there were those with a stronger voice who were doing a much better job. And to be honest? It’s not going to affect us as much as some others. In fact we are working on “line waiting” in ABA, and maybe, in about a year, he might be able to handle the new system. But I fully support those families that are not in our shoes, for whom this new plan will NOT work, and for whom a trip to Disney is now off the table.
But what I DO want to address is this idea that I unfortunately read (and experience) that we are living some sort of privileged and elitist lives as parents of a special needs children. That apparently the REAL reason many parents are outraged is because we want “preferential treatment” because we are “too lazy” to actually parent our children.
Yup. You’re on to us. I was just thinking this morning as I sat eating my bon-bons and watching my stories how HARD my life is, and wondering what i could do to make it easier. Even though right now my life is made much easier in SO many different ways. Let me give you a glimpse into this amazingly elite life:
- Where we live is no guarantee that my child will attend the local school. Oh no! We get to have special meetings with tons of paperwork in which EVERY. SINGLE. ISSUE my son has is hashed out over a table and every deficit discussed until we are exhausted with eduspeak. Some even get the privilege of fighting tooth and nail and hiring lawyers sometimes to get the schools to actually obey the LAW and make sure our children get the education promised to them. Not to mention all that extra face time some of us get with teachers, aides and administrators! why, they don’t hesitate to tell us everything our kids did wrong! They are like the paparazzi of bad news!
- When my child has a meltdown or an issue in the grocery or any other sensory laden disaster zone, our parenting is immediately called to question. And if we should even ATTEMPT to explain our special privilege, we get joyful accusations of being too lazy, or told to keep our children out of the public if they “can’t behave”—told of course by the same people that our children “need to learn to behave in public” according to the “social contract”. See? We get the bonus privilege of having to solve basic hypocrisy! Sweet!
- If I should mention one IOTA of frustration on a bad day, my ability to parent a special needs child is called to question—hell, now even the safety of my child is brought up because there are those that think a bad day equals wanting to harm my child. Or at the very least, that my language is abusive and shows how much my ableist bias is showing, and that I must resent my child. So I get the very distinct honor of either watching every word I say OR taking it on the chin from every side.
- While other parents enroll their kids in dance or karate or gymnastics, I get the privilege of being told they can’t handle my son, or that I need to provide an aide, paid for from my own privileged pocket, to help. Instead of the just so common practice of popping down to the Y and signing my kid up for “just work the energy out of him PLEASE” class A, I have to talk to each of the instructors and gauge their attitude toward children on the spectrum—since by law they can’t deny me, but that doesn’t mean they can’t be a dick. And if I’m lucky, I get to watch an instructor ROLL THEIR EYES as they have to deal with my son. I cannot BEGIN to tell you how self important that makes me feel.
- Some of our parents are in a REALLY elite group. Their children just don’t sleep. They get to spend their days punchy and irritated because they are surviving on a few hours here and there. (I am sadly NOT a part of this group, but I can dream…) Oh, the privilege of being absentminded and exhausted ALL THE TIME. Gosh. If only, huh?
- We get the distinct pleasure of not being invited to birthday parties much, if ever. Who needs games and cake and bounce houses and friends when we can spend our day at home lining up hot wheels cars?
- As they get older, what fun! Bullying! Our children will more likely be the target for a bully than most other children. That really IS elite. Why it makes me break out in hives just thinking about it! I can’t wait!
- And let me share our dining out experiences! Not only are we often placed somewhere in the back where we won’t disturb anyone and can often be forgotten by the wait staff, but sometimes we don’t even get to eat and have to leave because they changed the menu or there was a clown or someone sneezed too loudly! What a fun game to get settled in and ready to eat, only to pack up quickly while your child is screaming ad having all the patrons looking at you in judgment!
- Have I mentioned the writer’s cramp? Oh, the joys of becoming your child’s personal administrative assistant. Filling out this form and that! Quite often with the same information! Oh, and the evaluations! remembering your child’s agpar score isn’t something every parent has to do—only those of us in the core elite! I only wish you could experience the Vineland which drives home EVERY. SINGLE. developmental milestone your child has missed. Most of us get to fill that our every other year or so—unless we apply for something at a new agency! Then we get to do it again! Bonus!
- We are so lucky to get to work first hand with insurance companies as we work with Medical specialists and therapists to make sure our kids get all the special treatment they are entitled to. Like speech therapy and trips to the neurologists! How special it is that we get to spend so much time sitting on hold trying to get treatments approved. Muzak versions of “Horse with No Name” and the entire Yanni catalog. It’s like the special soundtrack to our lives.
So yeah, it is a pretty elite group. There’s so much more here I didn’t even address, because I wouldn’t want you to develop too much envy. But I must say, all of these special treatments pale in comparison to the anger and idiocy thrown in our direction when we dare to stand up for ourselves and our children. Gosh—the name calling alone is worth every minute. I only wish you could experience just a day of this sort of privilege.
Really. I wish you could experience a day—because then you might achieve the one special thing you CAN gain from such an experience: COMPASSION. Even I, whose family will not really be too hindered by this Disney thing, recognize that some families are now shut out from the happiest place on earth. Because what being a member of this elitist group has taught me is that we have to learn to look out for others and not just ourselves, because we are in this together, like it or not.
Now , if you’ll excuse me, I need to go shop for overpriced sensory gear labeled for “autism” while I sit on hold with the insurance company. I hope you’re not too jealous.