One of the biggest problems I had as a disabled employee was that when I made a mistake (or a perceived mistake), no matter how small, it was very often blamed on my disability and was therefore uncorrectable and the task would be taken away from me. Examples of this are when I was working in the PICU and I was in a family waiting room getting a drink during a break and did not hear a parent call my name from behind. He did eventually get my attention and I was able to answer his questions. The therapist that was covering the PICU witnessed me not hearing him, but did not wait to hear me tell the guy I was hearing impaired and I'm sorry I didn't respond. Said parent was fine, but the therapist went to my supervisor and said that I should not be allowed to work in the PICU anymore. It was sad that I got kicked out, because I was really good in there. Many patients were nonverbal due to traches and I could always find ways to communicate with them.
I had another boss who I really liked as a person but she made me crazy as my boss. She was an admitted workaholic and had extreme difficulty delegating. She would sabotage herself. She would say, "Go write this whole manual for teenagers about the rules for our mentoring program." And I would wonder if we shouldn't decide what these rules should be before I wrote a manual about them. She would just say, just go write a rough draft! We can edit it later. So I would write it and just completely make shit up off the top of my head for what I thought would be appropriate rules for a mentoring program. Then, she wouldn't get past the first page of seeing stuff she didn't like and be all, "I now have to spend the whole weekend writing this myself!" Okay. If you really want to. I was never given a chance to fix it myself. That is not really disability related, because she did that with everyone, but I often felt more like a client of hers than a coworker. I believe she was well-intentioned, but she was always trying to counsel me on disability stuff instead of just treating me like a colleague.
This all relates to how great it is to have this parenting job, now. Despite what I have written before about my fears of having social services come and take away my kids due to disability, the plain truth is that no one else really wants to take responsibility for my two rambunctious toddlers. Sure they like to play with them and they think they are cute and all that, but when it comes down to dirty diapers or sloppy eating or tantrums or hauling them around town--well, then they are all my responsibility. Everyone defaults to mom. A large extent of this is because the kids always default to me, and that is normal and I think all primary caregivers of small children probably have this feeling. The buck always stops with me. I am the overseer and the underwriter. I am the CEO of raising these kids.
And sometimes it is hard because it is frustrating when I am doing thirty things at once and no one will really pitch in. Sometimes I get frustrated at D because he doesn't pitch in. In many situations, he can't. And here I know that my resentment is illogical and I just have to get over it. But sometimes it is just the mental space that planning and organizing for kids takes up in my brain. He just never puts too much thought into it. Today, the plan was to go to a park and maybe get something to eat on the way there or home or whatever, just fast food. I had planned that it would take no more than two or two and a half hours and then I could get the kids back for their nap. The park part was great and fun and all that, but then D had us in the car for two hours as he tried to find a dairy queen that was supposedly in the next town over but was really quite far away. I know he didn't mean to have me trapped in the car with two very tired, hungry and fussy kids for a total of two hours, but he just doesn't sometimes think ahead to what the consequences of his plans will be and what the kids can handle. Nor what I can handle. I can have the kids skip naps on occasion for a really good reason, but I need those naps. They need those naps. Missing them makes my day kind of hell sometimes.
But, that is not what this post is about. This post is about how nice it is, despite the car tantrums and exhaustion that are inevitable, for me to be able to do a job in its entirety and to completion without people breathing down my neck and saying I can't do it because of disability stuff and just taking it away from me. How nice it is when I make mistakes (like giving in to D's propensity to want to eat in the car which I've always hated and actually be stupid enough to feed my kids ice cream in it), I get to self-correct my own mistakes. After we got home, I went out and cleaned the car seats of melted ice cream and no one said, "you can't do that because you are blind" or whatever. You don't know how big of a deal that is sometimes.
My poor sister, whose birthday is today by the way, always had to come and fix my mistakes as kids. If I didn't sweep the floor or clean the counters in the kitchen good enough, my mom would tell her to go do it because I couldn't see what I missed or whatever. It wasn't until I was a senior in high school and worked at Taco Bell with the help of a voc rehab worker who made me clean the floors over and over till their wasn't a speck on them, that I realized I could clean worth a shit. It is nice to be able to really set my own quality controls as a parent, set my own standards--which I think are pretty high--and meet them and revise them as I go along. And when I screw up, I fix it!
One of my most scary mistakes was when Naim was about three weeks old. I used to use infant car seats around my house as places to set one while I fed the other one or whatever. I had set Naim down and was feeding Aaron on the couch. All three of us fell asleep. When I woke up, Naim was face down in the car seat. His head was stuffed down in the corner in a very odd way, and his feet were limply hanging off the edge of the seat. I remember walking over to him quickly but it felt like slow motion. I was sure he would be dead or unconscious. It was just a few feet but I felt like I couldn't get to him fast enough. And then I was afraid that when I touched him, he would be cold. I really thought I might have killed him. Well, he was just asleep. He was fine. But I had a three-week old who could turn over. I never knew babies that young could turn over so I never thought about it. Apparently, and no one ever told me this, some preemies can hyper-extend when they sleep and arch so much that they just kind of flip. Naim turned over often during the first couple of months, then he lost the ability, then at around 5 months he learned how to do it for real. But after sort of calming myself down after that incident and being so relieved that he wasn't dead, I thought all night about how if anyone saw this, or if this would have been on the job, I would be in big trouble. And how glad I was that no one knew except me. And that I would just have to always strap him in the car seat instead of just thinking I would just set him in it for a few minutes. And how wonderful it was that I could correct my own mistakes like that without anyone blaming it on disability and just taking my job away from me.
I have taken care of A LOT of children over the years. I have never had any serious injury or problem occur. Sure, kids have fallen and scraped their knees in my care, but never any safety issues at all have happened. However, all that didn't matter to anyone as much as they worried about what could happen in the future. And that was something I just couldn't fight.
The reason I am not a Child Life Therapist right now is because of this. I used to work in the oncology unit of a children's hospital. I had a great supervisor who always fought for me and believed in me. And then she retired. And everything went downhill after that. The above thing happened in the PICU. And then there was always this woman who was afraid I was going to yank these kids IV ports out by tripping over their IV lines or something. The fact that I had worked there for almost two years an never had a problem meant nothing. And then it just came to a head one week. I took kids into a play/activity room a lot and we did art projects or played games or whatever. Sometimes I would have up to 5 kids or more in there. Virtually all cancer patients had their IV lines and IV poles come with them to the play room. This sounds minor to get upset about, I know, but when my supervisor retired, I was just getting set up to have a once a week cooking activity where we would make cookies or whatever. The new supervisor had herself a little shit fit about it and said I couldn't do it. I finally called her on it and she took it back to the IV issue. So, stupidly, I challenged her to a little experiment. This was stupid because I was screwed either way. But I said, why don't we take several kids into the playroom, and we will, at a particular point, both jot down on a piece of paper where each kid is and where their IV lines are. She agreed but said we had to have a third impartial person do it as well. So we had a nurse administrator come in and when about 6 kids were busy, all three of us drew a diagram of their IV lines. The nurse administrator looked at both of our drawings, and she said that they were both right, but that mine was way more detailed. I didn't just make straight lines for the IV, I actually knew which lines were under others and which were over, and which were wrapped around a particular chair or whatnot. Probably because I watched the kids and paid attention to what they were doing and which direction they had come from while she just glanced with her eyes. The admin person also said, I don't know of a nurse that hasn't accidentally pulled on an IV line at sometime in her career.
Well, as you can see, I was screwed if I "lost" for obvious reasons and I was screwed for "winning" because that pissed this therapist off something awful. She really didn't say anything to me after that. She didn't kick me out, yet she didn't say I could do the cooking activity. And when it came time for me to apply for an internship that I needed for professional certification, she completely ignored my application. This was a very detailed application that was like a big packet of stuff. I was more than qualified. She didn't interview me, she didn't send me a rejection letter, nothing. It was as if I didn't exist. When I asked her (very nicely) about it, she said that they had decided not to take on an intern that year. Several weeks later, a young woman came into the unit and said she was going to do a cooking activity with the kids once a week. She was the new intern. I'm sure she was nice enough and I never said anything to her about it because it wasn't her fault, but she had far less education and experience than me. I ended up sort of training her.
Well, I don't have to write a career post now, because you can just multiply that story by twenty and change the setting to school buildings and you pretty much get the picture. People really don't like to be proven wrong by a disabled person. And so it ends up being a bit of a catch-22. You can't gain their trust without proving their ideas and preconceptions about you wrong. You can't prove them wrong without making them feel all insecure or whatever. As always, my disclaimer is that of course, not everyone is this way, and I have had some very nice and wonderful supervisors and co-workers as well. But I've certainly lost opportunities because of the few busybodies who have to take it upon themselves to make sure they are the Police Officer of Self-Importance and Liability Issues.
This has been one of the most breathtakingly refreshing thing about parenting. Sure, I screw up and get tired and lose my patience and don't always know the right answer. But I am able to use the competencies and skills I have that I've always been held back from using and can finally work on something to my full potential. I know that at two and a half, we are just getting out of the gate and haven't even hit a tenth of the challenges we are going to face. But sometimes I can't believe how well it is going, and how much I can accomplish when I have the opportunity.
And finally, I have to say that two year olds are fun! I don't know why they get such a bad rap. Yes, they are stubborn and fighting for their Independence and they have a fit because you won't let them run up and down the light rail train or whatever, but I am really enjoying them now. They are so excited by life and are so eager to learn and they change every day. More complex conversations just emerge from nowhere. Aaron has steadfastly refused to talk on the phone thus far, yet he insisted on listening in silence, and finally he just decided to up and talk to my sister the other day. (Here is the slice of conversation I heard from my end: Aunt Lori! Macaroni! Spaghetti! Pizza! Prezdent! Bush! Bush Bad! Bye Bye! I suspect a bit of political coercion may have occurred there.) Aaron is stubborn and challenges the crap out of me some days, but he is a little intellectual that likes to read and draw and paint and count and do worksheets and draw with cement chalk and makes me kiss his trains and feed them breakfast. And he worries about his brother and hold his hand when he walks down the ramp of his dad's van.
Naim challenges me because he struggles so much with enunciation and then I can't correct him because I really can't hear what he is mispronouncing. So we do a lot of repeating. But his language is also growing by leaps and bounds. He wants a DDD! (DVD) In the morning, we have to Get MOBATED! (Get motivated). He sticks his hands in paint and has to let me know he has MASHY HANS! (Messy hands). He reads the words to books with me and in "My Truck is Stuck" he always shouts the line "Peas halp! Peas halp!" (Please help). He gets in a laundry basket and signs to me that he is in the forest! And points to the, what are they? fency part of the laundry basket? and shows me the "trees". He wants to be a "Mucky!" (Monkey) which means to go uh-sigh down! (Upside down). He will say the "Not I" part of the Little Red Hen story and even use different voices for the duck, pig and cat. He is dramatic and imaginative and likes to count and move around and constantly make stuff up. He is also becoming more interested in books and quieter sit down activities.
He is standing up to Aaron a bit more. Aaron is very domineering and we are working on having him tell Aaron "No!" or "I don't like that!" or "Swiper! No Swiping!" Dora fans out there will appreciate that one. And then we are working on Aaron actually listening and abiding by this. It is far from perfect, but I have seen a lot of improvement. Aaron understands about sharing and taking turns and giving Naim space. He doesn't always do it, but he understands it and is doing it more and more. They are starting to see each other as separate people from themselves. At the same time, they are starting to appreciate each other and are showing affection towards each other and they are starting to like having the other one around. I can't pull the "We're leaving without you!" to a straggler, because the other one gets too upset at the idea of leaving his brother behind. They like to tell me what the other one is doing. They really do have a deep bond.
One of the "funnest" things about parenting is that I get to be a kid again. I get to go to parks and children's museums and play with glitter and with trains and ride tricycles and go down slides and swing. Its like a second childhood, but without the part where you have to listen to your parents!
I have these little flashes of like seeing pieces of paradise with them. Today in the good part of our day, the park trip, I had these moments of like clicking a mental photograph to store in my memory forever of these little moments that will never come back again but are so perfect in that split second. One was when Naim and I were building a little makeshift ramp for D so he could get from a curb down to the playground. We were kicking the playground wood chips around to make a ramp. Naim was just so busy with his job, feeling so important that he was helping and he seem to get exactly why we were doing this. Another moment was when we all were walking on a path and D decided to suddenly cut through the grass and go up this kind of steep hill. The kids just went running up the hill in the grass, arms flailing like toddler arms do. I'm all the time, every day, just so glad we get to be here for this.