Bird on the Street

All I Ask

12:32 pm

If you read my blog and don’t have a child with a disability, you might have, at some point, wondered if there was something you could do for me. Or for other parents like me, who not only raise children, but double as nurses, therapists, teachers, and advocates. Personally, I have an incredibly hard time asking for help or even accepting help that shows up on my doorstep. I feel weak, rude, or like I’m taking resources away from someone who needs them more than I do.

That doesn’t mean that I don’t want something from others, though. Because I do, and today I’m going to answer that age-old platitude: “if there’s anything I can do.”

So here it is:

Try to look people with disabilities in the eye.

If you meet a child with a disability, speak directly to them. A parent or guardian will let you know if they aren’t capable of understanding or responding.

Don’t assume that a person with a disability has a poor quality of life and don’t teach that misconception to your children.

When a person with a life-long disability dies, don’t utter the phrase, “it was probably for the best.”

Don’t waste time on pity–nobody wants it.

Don’t assume I wish my child was different. Don’t assume he’s a burden.

Teach your children that different is OK and be sure to include not just those of a different color, but those who move around differently, talk or hear differently, and even those whose bodies are different.

If your child asks about someone in a wheelchair, don’t tell them to “shush.”

And teach them that looking is OK if it’s done with a smile.

If you find a child or parent or adult who is open about disability, use them and get educated.

If you don’t know about something, ask when appropriate or Google It!

Ban the words “retard” and “retarded” from your home. Even in jest, they hurt people.

If medical stuff freaks you out, imagine being a first-time mom feeding your baby through a tube, and remember that no one likes hospitals or medical equipment–some of us just don’t have a choice.

I you are interested in volunteering, do a stint with people who walk, talk, or even breathe differently than you do. Familiarity will make acceptance easier.

Don’t worry too much about how I’m handing things and ask yourself if you’re doing enough to make this world a safe place for my child and all people with a disability. Do you live like the disabled are invisible? Are you inadvertently teaching your children intolerance because of your own baggage? In your desire to be “polite” have you crossed over into “rude?” Do you make assumptions about things that you know nothing about?

I will take care of my child. I will love and nurture him. I will teach him. I will give him every advantage I can afford, so that he might one day be the person he wants to be. I ask that you help make this a safe world for him–a world where he can be who he is without apology, a world where difference isn’t a crime. God didn’t give me a special child to raise–he gave all of us the opportunity to be the best or the worst version of ourselves. I’m doing my part. All I ask is that you do yours.

child sitting in rocking char

Filed Undermotherhood

I Have a Degree in Special Needs Parenting

12:02 am

Thursday I went to the Maternal-Fetal specialist’s office, so we could get our weekly peek at the Twinkie’s brains.

It was the first time I had this particular ultrasound tech, and as she worked, I watched the ultrasound in progress, asked questions, and made sure that she told me any measurements she was able to get. After a while, she asks me, “so, what do you do–something in health care?” I resisted the urge to laugh and said no and she responded with, “well, you seem to know a lot about things.” Then I explained that my son had special needs and that it’s kind of like getting a crash-course in a wide variety of medical issues.

Later, the doctor came in, and I discussed my anemia with him a little more. It’s a little confusing, but I have two doctors–one for the babies, and one for me. This is the one who didn’t prescribe the iron pills, so when I mentioned that the other doctor had, he began this really long explanation about how my body should recuperate on its own, different types of anemia, and so on. Basically, he was defending why he hadn’t prescribed the pills himself.

I was doing my usual thing: prying, picking apart his answer, and asking for clarification and he finally chuckled and said, “you’re smart.” The nurse immediately launched into it again, talking about how much I knew about the ultrasound and measurements.

I don’t know about you guys, but I think this is the way it is for a special needs parent. Sometime after having Charlie, I found that I couldn’t be satisfied by and article on Web MD. I don’t want to read “prognosis is generally poor.” I want to read the study, I want exact numbers, I want details. So when something was wrong with the Twinkies, I naturally did the exact same thing. I wasn’t satisfied with generalities, but wanted pure, unadulterated research. I even went so far as to download a PowerPoint presentation given to ultrasound students on how the measurement test works and what an appropriate reading is for every week of gestation. Yes, I get that involved.

So maybe I had to drop Botany in college.

And maybe my high school chemistry teacher called me “average.”

But if it’s medical knowledge needed to make good decisions for my family? I got that.

Filed Undermedical, motherhood, pregnancy

This Pregnancy Brought to You by Naps

1:21 am

I started a long, detailed post about my recent medical madness, but even I got bored by the whole thing. Medical drama is pretty boring unless it stars Dr. McDreamy or George Clooney.

So I’m going to give it to y’all straight and in as few words as possible.

I’ve already told y’all that I got Parvo and we believe it was possible that one of the babies had contracted it as well.

The last time we checked on Baby B–the baby that had boderline anemia–he seemed to be doing better. We still have to keep an eye on him for the next 8 weeks, but he finally seemed to be pulling away from that fine line that seperates us from us from the big, scary needle. By the time you read this post, I’ll probably be off to another check up, but Baby B has remained pretty active, so I feel good about him.

I, on the other hand, did not fair as well when I went to go visit my regular OBGYN.

Seems I have a pretty rockin’ case of anemia. In rare cases, Moms can get the same disastrous anemia that the fetuses are prone to when infected with Parvo. My iron levels were so low that the doctor did mention the word “transfusion,” but I did manage to avoid that.

But the doctor is still worried. I have a previous history of anemia during pregnancy and I’ve pretty much decimated my natural stores. Plus, I’ve got an extra baby in there, which means I could be even more affected this time.

With all of this on the table, the doctor moved my delivery date up to 36 weeks and added bi-weekly stress tests and blood draws to my regimen. Bascially, I’m thisclose to moving into the doctor’s office.

Blood issues aside, the rest of my pregnancy seems to be going well. My cervix is performing beautifully, so I’m still cleared to pick up Charlie and be as active as usual. I’m NOT as active as usual, but that’s because I’m carrying around an additional 20 or so pounds and have anemia.

So I’m napping a lot, taking supplements, and eating hamburgers, roast beef po boys, and kidney beans. I’ve got a smudge more than ten weeks til the babies are here and my to do list is long. Hoping for no more bumps along the way.