Monday, August 13, 2012

So Help Me...

I have had it up to *here* with stranger's responses to learning about Simon's health and development stuff.  Parents at parties, preschool administrators, anyone who really doesn't know Simon and has something to say about him.

I've had it.

I know people are so well meaning most of the time but if one more person says something uninformed/annoying/dismissive about Simon's issues, so help me...  (Mike Wazowski's little show tune "Put That Thing Back Where It Came From" from Monster's Inc is playing in  my head, of course).

When I'm talking to a stranger (particularly a parent) and Simon's heart condition comes up,  I give the short version of Simon's disease (his heart muscle got sick when he was a baby and he spent 4 months in ICU and has a lot of stuff going on as a result). Invariably the person asks, "so, can he have surgery to fix it?"

It's a totally valid question. 

And it makes me want to slap someone.

I usually take a breath and patiently explain again that it's the whole muscle that is sick so there is really no fix for it short of a transplant, which fortunately he doesn't qualify for right now.  However, behind my calm breath and pleasant smile I am  irrationally mad and dying to scream, "THERE IS NO QUICK FIX FOR THIS!  Yes, you heard me right, we will live forever with this anvil hanging over our heads. Besides, don't you think we would have gotten the goddamn miracle surgery by now if we could have?"

I think the "can't he just get surgery" thing strikes a nerve for me because when Simon first got sick and there was talk of a transplant I was pretty against it, for a lot of reasons.  When he started to get sicker and it looked like nothing was helping, I finally made peace with the decision to consider a transplant.  I felt so much hope that day, like finally we were going to be able to DO something instead of just watching him slowly die before our eyes.  When we met with the surgeon and decided not to do a transplant given how awful the whole thing sounded, I was crushed.  It was like I had been treading water in the ocean for 5 weeks and someone tossed me a life preserver and then ripped it out of my arms a few hours later.  There is no quick fix for this.  There is no magic day when it's all over and we have a carefree life.  This is it.

The other scenario involves talking about Simon's delays.  More times than I can count, a stranger who has interacted with Simon for a VERY brief period of time responds to my disclosure of Simon being in Special Education with, "Well he seems like a pretty average 4 year old to me". I know they mean well, but there are a myriad of ways I interpret this statement, depending on the person or situation.
  •  I'm reassuring you that no one can tell that he's different, so you don't have to be embarrassed
  • "He doesn't LOOK like a retard"
  • I know better than the team of 10 people who set up your son's IEP
When someone says this to me, I am tempted to run down the extensive list of all the ways he is NOT like other kids, tick off all the things Laura and I and his teachers see that make him different.  But since that might cause me to burst into tears in front of a total stranger, I don't.  I've also decided that usually it's not worth the breath to break it down for someone I will never meet again. So instead I just say, "yeah, he has a lot of stuff going on".

If I do go into detail at all, they invariably have a story about how they knew another kid who wasn't potty trained until they were 5 and is fine now, or have we tried chocolate pudding to help with the eating issues or some other equally useless suggestion or anecdote.  I *know* they're trying to be helpful.  It seems like it's just what comes out while they're processing what I've just disclosed.  AND it's pretty awful to have to sit there and listen to all the ways they want to make it all okay.  It's not. 

We have great, wonderful, full lives with an incredibly sweet, loving, charming son.  And our lives are more complicated and frustrating and filled with fear than we ever imagined because of Simon's disease. We've come to terms with it and it's exhausting to watch other people go through the denial phase about our lives.  Clearly I don't expect strangers to have a clue about how to deal with this but I'm also really, really tired of it.

Another mother at a preschool we were considering asked, upon learning about Simon's illness and being in a Special Education class said, "does he have emotional issues besides his health issues?".  I'm pretty sure she wasn't asking about his PTSD around haircuts. I, of course, interpret this as "Clearly your kid is not normal. Is he a weird destructive psycho that is going to mess with my precious child?".  So help me...

When it comes to interacting with institutions, I'm just about ready to kill someone.  With the institutions, it's not so much people's ignorance/attitudes but policies that are the problem. If one more director of one more program apologizes for not being able to take Simon because he is not potty trained, so help me...

After literally hours of phone calls/searches/begging, Laura finally found a camp for a few weeks through Oakland Parks and Recreation. After a month of conversations with 3 levels of hierarchy, we came to an agreement that they would take him but only if someone comes by every few hours to change his diaper and give him a tube feed.  In the interest of Laura's mental health, we decided to pay our teenage babysitter to sit around for 5 hours down the street and pop in every couple of hours to change a diaper or give a tube feed.  So we are now paying for camp AND a babysitter while he is at camp. 

I'm happy to say Simon is having a blast but the blood, sweat and tears it took for us to get him into that camp makes me just want to lie down and go to sleep for the next 15 years. 

There is a way that being Simon's Mama feels very similar to being femme lesbian.  No one can really "tell" that I'm gay, so I have to decide every time I meet someone new if/how/when to come out and be prepared for an awkward response .  No one can tell Simon has all these things going on so I always have to decide if/when/how much information to give if I want to have an authentic interaction with someone if he comes up.  Honestly, it's exhausting.

I'm just tired.  I'm tired of having to do so much thinking about how much information to give people and what they're going to do with it and running into snags with every single freaking program Simon is in (except his special day class, so far) and begging and pleading to be let into programs with typical kids and having Simon pigeon-holed for being in special education and worrying about if he's catching up or socially off or ever going to be able to hang with kids his own age and how many more times will we have to have these torturous negotiations with institutions that offer crappy services anyway and AHHHHHHHHHH!

If one more person or one more institution says or does something annoying in relation to Simon, so help me...

Written by:


Nate's Mom @ Nate is Great said...

You hit the nail on the head, mama - the information is pertinent to have an "authentic interaction." For instance, I can't relate to those parents who "complain" about their child not sleeping because they're able to leave their kids in their room while awake. Nate needs melatonin to go to sleep, often wakes up at 1 or 4 to start the day, and can never be alone due to self-injurious behaviors and a lack of age-appropriate judgment. So if you share your story, I might share mine - but not with any invitation for you to "solve" it -- because there's a team with a crazy amount of degrees doing that. We're right there with you, mama!!!

Terra said...

I *so* hear you - Michael's heart condition leads to the same sorts of frustrating conversations. It's very frustrating.

susan said...

I hear you. So frustrating.

Jen said...

I apologize for all the dumb-ass things I've said. And I know you know I mean well, and I know I probably haven't asked the dumbest of the dumb, but STILL. I apologize for adding even in the slightest to your load. I love you guys and I know I will never truly be able to empathize, and that that sucks. I'm grateful for those that do empathize. Awful puppetshow bullshit.

burstsofintel said...

As weird as this sounds, your anger and honesty are poignant reminders that listening doesn't mean asking questions "to be engaged" or "to understand," the critical importance of allowing people to reveal and share in their lives on their own time, and the implications of our quick-fix culture. Thank you.

kellibutton said...

Ugh. Noah has a transition meeting tomorrow and I'm not looking forward to it. He ages out of the Parents and Infants Program on his 3rd birthday. I'm already on the verge with the school for the deaf. That meeting might just send me over the edge.

Sorry people are such morons about Simon. Noah's hearing aids are like stupidity magnets, so I totally feel you.

Becca said...

Urgh. We adult disabled folk cop it, too - "Gosh, you look so well" when learning that my life expectancy may be quite short or "but you speak so clearly!" when I mention needing sometimes to use a voice-output communication aid. It's bloody infuriating. Multiply up a thousand-fold for being on the autistic spectrum (see this outstanding video for a comprehensive go-over of the most common ones we tolerate) or for any mental health condition. ("You've been diagnosed with depression? But you're always so cheerful!")

Pause to apply head to desk, and so on.

The potty training thing is bullshit. I've a friend (now 28, still incontinent due to her profound physical impairment) whose entire childhood was blighted by much of the same, over here in the UK. Makes me very cross indeed. Doesn't the ADA cover that stuff - forgive me if you're Canadian, I can't remember, but presumably Canada has some similar law!? Would they be allowed to turn him away if he was a wheelchair user? Urgh. And then of course you get the extra thing of if-they-don't-want-him-we-don't-want-them, mixed with a still present need for camp/preschool/nursery/kindy etc etc ad nauseum.

Amanda & Aya said...

I hope your experience at our camp was different and that Simon can have an amazing year. Everyone is ready to create the best possible learning experience for Simon and the other children! We loved having him in our class!
See you soon,
Teacher Amanda <3

Kate said...

I'm new to having a sick baby, but I totally hear your frustration. I really try and cut people a break, to lighten up (especially on family and friends!), I know they mean well and just feel stupid and useless and powerless (join the club!) and want to be helpful, and yet! these conversations are so difficult. I think the most surprising thing about having a new baby has been how it's changed my relationship with my mother, and my partner's relationship with his.

Anyway. Hi. Thanks for your email through bpn. There's lots of good, smart, valuable stuff here... I'm totally rooting for Team Shimmy :)