Still Alive at 18 Months? Check.

The kids will be 18 months tomorrow (Wednesday). This is somewhat of a milestone to me. Eighteen months seems like the official end to babydom. Kids are usually walking, talking and eating solid foods, off formula and off the bottle (or breast milk). Although my kids are a bit shy of a couple of these goals, it still seems like I no longer have babies. I now have kids.

I never realized how heartbreaking and ecstatic parenting would be, and that it is possible to have each of these emotions at exactly the same time. I am in the somewhat unique situation where I know that for me, there will only be one pregnancy, one (albeit times 2) babydom. The first breastfeeding experiences were also the last. The first solid foods were also the 'last' first solid foods. The first words and first steps were also the 'last.' When I put the crib down, it will go away forever. When I put the bottles away, I will never get them out again. I will give away their swings and walkers. They will never be used for another child of mine. I think this is something that women who went through a lot to have their children because of infertility may understand. The likelihood of having a newborn baby again is nil. I guess other people can adopt a newborn, but it is almost impossible to adopt when you are disabled. I'm so lucky to have the kids I have. And despite the challenges of twins, I am lucky that I do get a double dose of all of my firsts that are also my lasts.

The main DHAC insult that D and I get on a regular basis is that we are 'so selfish' to have had children. That our children's development and lives will be forever damaged because of their disabled parents. There is no way for me to respond to this except to keep doing what I am doing and hope it paves the way for more disabled parents to conceive and/or adopt children. I am not a perfect parent, but I do believe that our example is our best defense.

Today D and I went grocery shopping, which is quite a job for all four of us. We had the kids in one of those impossible-to-drive carts that look like a car. I have to use that one because it is the only one I can fit two kids into. Then I have to pull it from behind because I can't see well enough to push it ahead of me. Between the kids in the car part and me pulling them and D in his chair with one amputated foot, one bandaged foot, and a bunch of tubing that goes to the farting wound vac machine hanging off the back of his chair, we make quite a spectacle. I mean, people stare. Unapologetically. Heh. Then add that I often stop and sign/talk to the kids about the foods we are getting and let them hold them and put them into the cart. Sometimes, I miss that people are waiting because we take up so much room (and you know, cuz I'm deafblind) and D has to sort of nudge me and tell me to move. Most of the time people are nice, but sometimes they aren't. I wonder if the kids sense the rudeness of people already. Again, one of those situations where the possible damage being done to my kids isn't our disabilities in and of themselves, but how people treat us.

Those car carts don't hold a lot, and so we ended up having to take two carts from the check-out to our car. A clerk took the regular cart and I pulled the car cart. When we got to the car, I told the guy that it takes us a long time to get all four of us loaded into the car, so he didn't have to wait. He didn't hear me, because he was deaf. I didn't see him sign deaf. So D had to tell me that he didn't hear me. It was kind of funny.

I found myself immediately relieved and at ease. One of ours. A D/deaf guy. I don't know how to explain it. It's just after an hour of stares in the store, I was among one of my own. I signed to him in my broken ASL what I had just said, and I can tell he was relieved as well. So we had a short sign conversation, and at some point I signed 'thank you' to him and then Aaron signed 'thank you' to him. And I could tell he was impressed by my kid signing to him and he asked me what else he knew. So we went through some of the food we bought and Aaron signed 'pear', 'apple,' 'cereal,' 'cookie' and some others. I had to interpret some of them, but I was just thinking, Aaron! You are having a conversation for the first time with 'the public,' and it is in a language of disability. A language of strength and survival.

Meanwhile, D had hit his remote and auto started his van, auto opened the door, auto put down the ramp, and was auto getting himself in the van. This always causes stares in and of itself. When the man walked away, there was a group of people staring at us. D was in the car and I proceeded to put the kids in their car seats and start putting in the groceries.

I kind of felt like, "Bwah ha ha ha!!! We are here! We are multiplying! You can no longer make us invisible! We've got jobs, cars, groceries and kids just like you, see?! We aren't going away!"

A lot of you other bloggers have not put pictures of your kids up or have password protected them. I do understand this and I go back and forth about it myself. On my previous blog (pre kids), I didn't post pictures at first. People wrote to me and said things like "If you work in a hospital, you must not really be disabled." Or, "If you are really disabled, you must not really work in a hospital." I finally started posting pictures and small amounts of video of me with my guide dog in the hospital, on the light rail train, doing IV tasks, etc. It seemed to help tremendously.

Now, although I haven't been very diligent about keeping the photo album up to date, it seems important for me to put photos of the kids up. People have written to me and said they thought my kids would be all dirty and in mismatched clothes or just staring blankly with a dull glazed look due to lack of stimulation or something. People seem pleasantly surprised that they do get out and go places and are mostly smiley, cute, regular kids. I would not sacrifice their safety for this nice side effect, but so far, I haven't had any sort of even remotely questionable incident in regards to them. If something does happen to make me uncomfortable, the pictures will be gone or be password protected. But for now, I think I'm going to leave them be. Hopefully, I will get a new camera soon and be back to taking pictures and posting them. D has a camera that we use, but it is a good camera that is too hard for me to use because it actually requires skill and vision. I broke my old, cheap, point and shoot one. But, D, my birthday is coming up...hint...hint.

Related to this, one thing that is nice about having twins is that when a little problem does come up (like Aaron's delay in walking), it isn't instantly blamed on our disabilities, because Naim walked right on schedule. In turn, Naim's language is--I wouldn't say delayed at all--just on the lower end of the normal range. Aaron, however, is kicking ass language wise and is advanced for his age. I think if I were to just have Naim, people would start blaming his language skills on me. Since Aaron is doing so well, people see that these are just individual differences between them. So, yea! me! for popping out twins.

We still get the "But-what-er-ya-gonna-do-whens" from people. We will probably get these forever. They say, "butwhateryagonnadowhen they start eating solid foods?" "butwhateryagonnadowhen they start to crawl?" "butwhateryagonnadowhen they start to walk?" "butwhateryagonnadowhen they have an accident and need to go to the ER?" "but whateryagonnadowhen they start needing rides to music lessons and soccer practice?" "butwhateryagonnadowhen they start wondering why their parents are different?" It goes on and on, despite the fact that we've already ticked off a number of these things. And no matter how successful we've been thus far in finding solutions for everything, people still want to challenge us to have the perfect answer for every single scenario that might ever come up in the future.

So naysayers, you can relax a little. We got through pregnancy, birth, even an ER visit. You can now check off babydom. Only 16 and a half more years for you all to wonder how we are going to screw it up. It must be exhausting for you.

I suppose all parents are selfish on some level for having kids. Sure, in some ways we were, too. But we also are the only ones (or one of a few) who know beyond a shadow of a doubt what we are capable of. To not have any expectations of ourselves and just sit around hiding from the world and not having any life seems selfish. To not share what gifts we have with our children and others seems even more selfish.

P.S. There are a lot of disabled parents out there. We are not that unique. There are resources. Here are a couple:

Parents with Disabilities Online

Through the Looking Glass

Parents with Disabilities (This is a blog by a woman is a lawyer and single adoptive mother. She is a deafblind, wheelchair user. She is WAAAAY cool and one of the heroes in disability culture and lore. She is who I look to when I get frustrated with the above issues.)

Comments

[rossecorp]

I am always surprised when you write about the reactions you get from other people. My general attitude toward people with disabilities is that I assume they can do whatever, unless they tell me otherwise. I'll admit to being curious about HOW they do things sometimes--whether they use technology that I'm not aware of or whether they have devised some method through their own creativity. I will also occasionally say something like, "Can I help you with that?" but I try to only do this if it clearly appears that the person I am asking is facing some obstacle I can easily assist with, or it is a situation in which I would ask anyone if I could help. It would NEVER occur to me to think that your children might be dirty or in mismatched because you're disabled! My default thinking is that you have a way to do what you need to do, I just might not be aware of it. I am appalled that people think some people can't parent appropriately because they're disabled. I DO think, however, that often people and children with disabilities aren't given the services and equipment they need, and end up struggling in ways they don't really have to. For example, not having a power wheel chair. I think there will be issues you have to deal with that I, as a non-disabled person, won't have to, but that's no reason to think you won't be able to work through them.

I also wanted to say that, as a gay person, I get some of what you're saying in this post about your relief at being with "one of us" (ie, the grocery store clerk).

[That Girl]

Chez Miscarriage (my perosnal hero blogger) always advised having comebacks prepared for "mommy drive-bys". While I realize yours are even more rude and ablist than other moms, the princble still applies...

"Whateverwillyoudo when your children need to learn politeness?"

[Lisa M]

My son is deafblind. He will more than likely be wheelchair bound. I love reading your blog. It is so insightful to see how you think and what you struggle with. I appreciate your candor.

[shannon]

We saw two disabled dyke moms at Pride this weekend and I wanted to hang with them and be all like "hey, I know Lisa." (Since I'm CERTAIN all the disabled parents know each other, right?)

I have decided to learn to sign more for real. Nat is getting really into it lately and it seems like a good second language for her to maintain during her "language window" years.

That whole "you are selfish for wanting/having children" thing is so weird. People say that about glbts too. It's great how our stupid patriarchal culture considers women worthless unless they have children and then when there's some kind of glitch like infertility or being disabled or gay, they're shocked that we still want them and suddenly instead of being selfish for being "childfree" we're selfish for POURING our resources into having and raising kids; more resources than other people require, to give kids a richer childhood. Your kids are going to be so extra cool when they grow up because they had you for parents. They are so lucky.

But then, I think freaky=blessed.

[far and away the farthest]

I think I would have to have a terrible come back even though I know it would only make the problem worse. My response to 'what will you do when...?' would probably be [with great shock], "You mean they are actually going to do that? You're sure they are going to learn to walk? Man, I am going to have to figure something out here pretty quick!"

But that is why you are a tolerant person and I am a huge crab.

[ladybug]

hi there,
i dont know how i linked up to your blog, but i just wanted to say HELLO and i think you are an awesome mom!!! i love that you make the laminated books for your kids... [i wonder if i have kids in the future i can put a "big laminator" and "craft supplies" on the baby registry? ;)

keep doing such a great job. your kids are beautiful and look like happy kids!

in admiration,
ladybug

[Vanessa]

Don't people make the weirdest comments? I've been told a million times that I'm "brave" for marrying and having a child with my husband, who has a severe congenital heart defect, because "he could die anytime." Well, yes, he could. But I would still have the 12 good years I've spent with him, and our daughter would still have all the things he's given her -- the ability to draw, the love of music, the joy of playing pretend. There's nothing selfish about that. Plus, if he'd just been sitting around waiting to die for the last 36 years (his parents were told when he was born that he wouldn't live to his teens -- guess that diagnosis was wrong), he would have had an extremely boring life!

And I can imagine what a humongous hassle it is to go anyplace with a wheelchair. My husband uses a wheelchair or a scooter sometimes at places that require lots of walking, and maneuvering/getting through crowds/etc. is always a pain, plus people look at us like they're thinking "What's wrong with him?" We get the same look when we park in disabled spaces and he gets out of the car and walks away. I wish I could find a bumper sticker that says "Not all disabilities are visible."

Um, anyway, sorry for the long drive-by comment. I've visited your blog a few times in the past, and I think your boys are beautiful and obviously very happy. So much for the dirty-clothes-glazed-look theory. :-)

[cluttergirl]

Lisa, you are one kickass woman. I admire you so much... most of all for dealing with all the ijuts in the world. Egads, reading your blog I realise how many of them are out there. Sorry I haven't been by in awhile. Your boys have grown so BIG! and I totally get your "first=last" thing. I kind of feel like that myself. I don't know if I'll ever have more than one kid. cheers!

[Lucía Moreno Velo]

Lisa,
I just discovered you blog and loved it.

I am an able, lesbian mother of a child with a light motor handicap and I can relate to your relief about the deaf clerk and people staring. We're here!! We're not going away!! Loved that and feel the same.

Also I wanted to say that I live in Spain (Europe). We have Social Security here and I appreciate it more after reading your blog.

A big hug,
Lucía