Disabled for Life

A while back, Charlie was evaluated by the office of Persons with Disabilities to see whether or not he would remain on the state’s list of disabled persons. There are several categories—things like “gross motor skills,” “fine motor skills,” “speech,” "self-care,” etc. If you score below the 60th percentile in two areas you stay on the list for three more years. If you score below 60th percentile in three or more areas AND have the appropriate diagnosis, you get on the list for life.

The evaluation included a whole range of things and truthfully there was little I could answer “yes” to. Despite this, I was devastated when I got the call telling me that Charlie was “disabled for life.” It just seems so finite—like there’s nothing I can do. She also told me the parish had agreed to pay to have a wheelchair ramp installed on the outside of our house.

I should be thrilled about the ramp. I knew we would need one—we live in South LA and our house is raised three feet–but expected we would pay out of pocket for something like that. Now, it will be taken care of. Hubby, the engineer, was more interested in that news than in anything else we’ve done over the last few weeks.

I’m trying very hard not to think about the other side of the conversation—the part where my child is disabled for life. The part where he scored below the 60th percentile in three areas.

I can remember being in Elementary School and getting very upset because I’d  scored in the 87th percentile on a standardized test. I was horrified and disappointed in myself. I’ve always been a 90th percentile and above—preferably 99th—kind of gal. I do tip of the top.

Charlie doesn’t do average either and it breaks my heart. My beautiful, tiny boy has already failed so many tests. I know, logically, that it’s just a test. I know that they do nothing to describe my child’s potential or even the amazing odds he’s overcome in just three years.

I also know that I have a long way to go before I’ll be good at living on this side of the bell curve. I have miles to go before I learn to fully detach from this unit of worth.

I’m trying, but some days are harder than others.

faces 048

Unit on Faces

Since Charlie is going to be studying body parts when he gets to Preschool in August, I thought it would be a good idea to cover them at home before then. This week we’re doing faces and some other time this summer we’ll do big body parts like arm, hand, leg, etc.

Key Terms: Eyes, Ears, Nose, Mouth, Hair

Goals: To be able to identify key terms on himself, on others, and in pictures.

I will note that since Charlie is now three, I am spending a little more time giving him a chance to “prove” what he knows. Basically, I ask him a quick question and if he gets it right, I make a big deal. If he doesn’t get it right I just move on quickly. No sad faces or disappointment. He’s three for cryin out loud.

Activities

Making Faces. Cut all the parts out of sticky-backed foam and then let Charlie put them together (with copious help). Somebody told me they wouldn’t know where to buy sticky-backed foam. I get mine at Walmart or Michael’s Craft Store, but any craft store should carry it. making-faces

Googly Eyes. Cut circles out of foam and then I had Charlie put googly eyes from the craft store on each face. You could do this with construction paper too. Once we were finished, I stuck them up over Charlie’s changing pad, which was great because he likes to pull them off the wall and every time he does, we talk about the crazy eyes. Reinforcement, baby.

googly-eyesMagazine faces. I cut out a bunch of eyes, noses, and mouths from magazines. I’d put three in front of Charlie and then ask him to “find” something. We did this activity all week and he got a LOT better at it towards the end, so I feel like we made some progress.

magazine-facesFunny Noses. I bought these funny eyeglasses/noses from the dollar section at Michaels. Charlie wanted NOTHING to do with wearing them, but he had a good time taking them off my face whenever I said, “can you get mommy’s blue nose?”

funny-nosesEyeball Pizza. Pizzas with green pepper and olives strategically placed to look like eye balls. Charlie wasn’t terribly impressed with the veggies, but pizza? Always good.eye-pizzas

Book We Enjoyed

Toes, Ears, and Nose by Marion Dane Bauer and Karen Katz.toes ears nose

A little babyish, but perfect for my book hater. This is one of those books with the little flaps and it covers a bunch of body parts. We’ll probably use it again when we get to hands, feet, etc.

I am THAT Girl

It’s been almost three years since this happened, so I guess it’s OK if I tell you guys the story now. . . if the cops show up at my front door I’m blaming y’all, though, kay?

When Charlie became very sick, he was transferred to a large, well-reputed Children’s Hospital—one with a very fancy NICU services. One of the missions of this esteemed hospital was to encourage women to breast feed—even women like me whose kids were in no shape to actually nurse. “Nursing” mothers were given a food allowance and free pumping supplies. Right outside the NICU they had a little room with sinks, storage supplies, and a TV where you could go and take advantage of the super-charged pumps that hospitals have. Next door to the Pump Room was an industrial freezer and each woman was given a lock box to store their milk. In the haze of drugs and anxiety, it could be difficult to remember your lock combination, so eventually everyone would ask why exactly we were locking up breast milk. You carefully labeled every container, so what’s with the high security?

That’s when someone would whisper the story of The Crazy Mother–a distraught mother had stolen another woman’s milk because she wasn’t producing enough. Since breast milk is a bodily fluid,it’s considered a bio-hazard for anyone other than the intended recipient. Basically, it was like this woman had poisoned her baby. As far as I know, the baby was fine, but they instituted the lock box policy after that.

Charlie wasn’t in the NICU. Charlie was on a specialized floor called CVICU which stands for “Cardio Vascular Intensive Care Unit.” A whole floor just for babies with heart problems. One half of the floor was traditional ICU and the other side was designed specifically for families who would be taking their babies home. You slept in the room with your child and administered all of their needed food and medications. I’m pretty sure that if you were to wind up in hell, it would be a lot like that part of the floor: the stress and pressure of a medically-fragile infant combined with incessant beeping from monitors and a schedule that would make grown men weep. Fun times.

Since we required to be with our children at all times, they set it up so we didn’t have to go down to the Pump Room any more—they arranged for pumps in the rooms and there was a fridge on the floor where we could store our containers of breast milk. Once a day we would trudge down to the NICU floor and drop off our liquid gold in our lock boxes.

Finally, after two and half weeks on the step-down unit, we were permitted to go home. It took about two wagons to get all of our stuff out to the parking lot. I went back at the last minute with a mini ice chest and collected my milk from the processing room by the NICU and the fridge on the CVICU floor.

You can see where I’m going with this, right? I mean, it’s me—how else could things possibly go? When I got home, I realized that I had accidentally taken the breast milk of another CVICU resident. There it was, clearly labeled with the name of some mystery child. I WAS A BREAST MILK STEALER. I was THAT woman. People like me are the reason breast milk has to be locked up.

I couldn’t think of a good way to return the breast milk—I figured there was some type of protocol that would prevent them from using milk that had left the “chain of evidence” or whatever. Besides, it’s not like I was going to show up and admit to stealing someone else’s breast milk—even if it was a completely accident–so I threw it out.

So there it is. . . maybe people are whispering about me now? You never know.

After reading this over I feel duty-bound to add that I didn’t steal a day’s worth of the stuff–just one pump’s worth. The rest of the stuff I grabbed was mine–I think hers was just too close to the area where mine was.

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