A brief (well, consider the source) PSA

If you happen to work with families who are raising challenging children, either because of medical needs or emotional needs or both, here are some things to keep in mind. 

1. Pretty much every parent in this population is doing the best they can. I don't know a single one who is sitting around eating bonbons and binge-watching TV shows instead of parenting their child. (Note I said instead of. I realize that these are perfectly viable coping mechanisms if you have succeeded in putting said child to bed.) Please do not imply that by not completely your paperwork that we are neglecting our children. There is a very good chance we are neglecting your paperwork because we are NOT neglecting our children.

2. If something on that paperwork seems to be in error, please for goodness' sake, recheck your own numbers first. This population, even if we do neglect paperwork when we can, has pretty much a doctorate in paperwork. We do not want to do any paperwork again. We are meticulous when we do get around to completing it because we don't want to see it again. And because we deal with so many entities who require forests' full of paperwork, we are pretty much obsessively organized. Trust me when I say we know how many miles we drive to doctor's appointments. Finally, if you do not agree, I would try leading with, "I think perhaps you might have accidentally written the wrong number on ..." Leading with the implication that a parent might be falsifying numbers in order to pad travel documents with a few more miles... well, it makes it difficult to read the rest of the email in a sane state of mind.

3. While everyone else in the world is often telling us that we are wonderful, amazing, inspiring, and practically a saint, know that every single one of us is one careless comment away from feeling like an utter failure. See point 2.

4. If you do not have children who need extensive medical appointments or therapies or extra aid in paying for these things, you have absolutely no idea how much paperwork parents who do actually have. It is a full time job to keep track of it all, to fill it all out, to make sure all the t's are crossed and i's dotted. But yet at the same time, we are expected to not neglect our child, whom quite a few people secretly wonder if we are actually capable of parenting in the first place.

5. Guardianship. When you child with challenges turns 18, your world turns upside down. You have three choices: A) Pay outrageous sums to an attorney to gain guardianship B) File for guardianship yourself [because you need more paperwork and navigating complex and unfriendly systems] or C) Avoid it and then have the agencies who are there to "help" inform you that really your 18yo needs to start completing the paperwork themselves. I may or may not have suggested creating form with much larger spaces because not everyone can print in small letters. [Yes, we will file for guardianship... once I have the brain space to sort through everything we need to do. In my spare time.]

6. If you are asking for paperwork from this population, please stop and ask yourself if you really truly need it or are you just asking because you can and makes you feel as though you are doing something. I don't need to ever complete a child assessment form or create learning goals ever. I actually know, it's why I'm filling out the form. All this does is add more to my to do list and take time away from the child the entity says they are so concerned about.

There is nothing easy about parenting a child with challenges. But truthfully, the actual parenting of the child pales in comparison with all the frustrations, hoops, forms, assumptions, appointments, passive-aggressive comments, and financial challenges that come with that child. The irony being, we are also the parents who have the least amount of time to actually deal with it all. The entire system is wrong and backwards and hurtful to families.

It's been that kind of a day.

And my apologies to the forests whom I have personally destroyed due to the sheer amount of child-related paperwork I have completed in my lifetime.