I originally posted my husband's notes in the spring of 2015 and it quickly became one of the most read posts on my blog (it doesn't exist now, btw). A friend recently found it and suggested I repost it so that folks that might have missed it could read it, so per their request – I am.
One small caveat though, when you write something like this you inevitably get the “that’s not my husband” or the “Mom’s feel that too” and both are fair statements. So, for the second portion of this post especially, where it talks about fighting “They” let me clarify a bit – this is for all of us who fight (sometimes quietly and sometimes loudly) for our kids on a day by day, hour by hour basis. It’s for those of us who too frequently lose sleep (when we haven’t passed out from exhaustion) with the sometimes crushing guilt and anxiety we feel for our kids, their futures and their present. It’s for those of us who fight and sometimes feel very, very alone in our battles as we live in a world of parents, friends, neighbors and yes … sometimes spouses …. that don’t understand and can’t relate to our fight nor the energy we dedicate to it. It’s for those of us who fight, knowing that even if we win, even if we achieve our end goal in all likelihood the rest of the world still won’t notice, care or at the very least won’t understand why we gave so much for what to them …. seems like a minor victory. It’s for those of us who understand at a deeper, guttier level what it means to be, and sacrifice as, a Parent than most of our SUV and minivan driving “fellow parents”. Every person has challenges in their lives and every good parent has to sacrifice but this post is specifically for those of us out there who via choice, fate, cosmic happenstance, accident, destiny or a “higher power’s plan” were given an extra helping of challenges …. and who still rise to it. Thanks for reading – Steve
The end of the school year is always tough.
Lots of wrapping up to do.
For us, both personally and professionally, it also means sitting in a lot of IEP’s. To be perfectly honest it gets pretty draining after a while. In meeting after meeting the parents have to square off against a panel of school officials whose job it is in some manner or form to convince the parents that their child is not “normal” and will likely have a “limited capacity” for the rest of their lives. In doing this it’s their hope to construct lower standards that they feel are “appropriate” and which all too inevitably the parents will feel is selling their child, and their future, short.
I’m often asked how this stuff feels for Dads. You see lots of Mom’s at therapy sessions and school but not so many Dads. On more than one occasion I’ve had a Mom say to me….
“My husband just doesn’t accept/see/understand what’s going on….”
Time and again I’ve felt a bit like a fraud as they’ve complemented me on being so much more hands on and accepting of my child’s challenges. It’s funny because while I’m listening to their kind, heartfelt compliments on the inside I’m normally thinking …
“My God, you’re such a fraud. If only they knew that you’re not anymore accepting than their husbands. If only they knew that the fears that eat at their husbands are the same things eating at you.”
I’ve actually got a post that I wrote a good month and a half ago (maybe more) about this very thing. I never posted it because honestly it got too dark (not suicidal dark, just that helpless/frustrated kind of dark). I figured I’d let it sit for a bit and then come back to it.
Father’s Day is rolling around this weekend and I’ve thought about posting it …. maybe cleaning it up a bit …. but posting it. It was in the back of mind as I ran across a blog that I enjoy by a Dad, not too unlike me and a lot of other Dad’s out there, named Robert Rummel-Hudson. I’m going to be honest and tell you right now that his blog is a real portrayal, of a real Dad, going through real challenges, with his real daughter. As such, sometimes they can feel a little dark and desperate. The guy opens up and he’s real. I’ve attached four of his recent posts below because I think they capture the behind the scenes struggles of a lot of Dads out there, in a pretty elegant way.
For you Mom’s out there who want an insight into what your husbands might be thinking, it might be a worthwhile read.
For those of you out there who work with our kids (teachers, therapists, special ed teachers, psychologist, administrators, etc.) it might be a worthwhile read to understand … to the exceptionally limited extent that you can …. what you do to us and why we fight you like we do.
We all know They. We live by They’s rules, or we fight They with the weapons we have, which are almost never as effective as the ones They carry and which They often use with such little regard for the consequences.
As I look through my blog and the comments left on it, I can see that while my daughter would appear to be the most frequent subject of my writing and of others’ responses, there’s also a clear antagonist.
“They said my son would never walk.”
“They told us that our daughter would never be capable of writing her name or reading.”
“They never allowed him to sit with the other kids because They didn’t see any educational benefit to him or his classmates.”
“They never expected her to live, much less thrive.”
“They’ve denied our claim… again.”
“They objected to their kids being compelled to attend classes with mine. They don’t want resources being moved to special education.”
“They were pointing at me and making fun of how I walk. They didn’t think I noticed, but I did.”
They aren’t all the teachers and doctors and therapists that our kids encounter. Hopefully They don’t dominate our families or our communities. Indeed, in the best of times, They are in the minority, and their voices can sometimes be drowned out by those who do get it, who do believe.
But They are always there somewhere.
They tell us what our kids can’t do.
They attempt to predict the future, one in which disabilities call all the shots.
They look at our kids and see what can’t be done.
They withhold their resources, and their optimism.
They set expectations low, and then They work to make those expectations a reality.
Sometimes They are right. Perhaps They are right much of the time, at least on a technical level. And They certainly are very good at documenting their opinions and actions and creating the paper trail to protect themselves. They are smart, and They are omnipresent.
But if you, gentle reader, are a doctor or a therapist, a teacher or a family member, or even just a citizen, I have but one thing to ask of you. Just this one simple request.
Don’t be They. Just don’t.
Pretty powerful stuff, huh. It’s not just Dads. I know it’s Moms too.
Don’t make the mistake of the thinking that those emotions aren’t there though, we just don’t necessarily process them through the same as you do.
I know, especially if you’ve read all of the posts linked above, this little conversation we’ve just had might have been a bit of a downer. Sometimes though, if you want to see the full picture you have to look at the black parts too.
It’s a full-time job, convincing myself that everything’s going to work out somehow and that one day she’ll tell people “Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I’d like to dedicate this Pulitzer to them.”
And so we fight on …… not because we’ve got no other choice but because we made the choice a long time ago that to not fight, was not an option.
We don’t need any special motivation
they’re our kids,
so we hold on ….