Amazed by Intolerance

I sell on eBay, it's what I do. There's even a little link there, on the left side of this screen, to my eBay store. So every Monday I go shopping for inventory, and I never cease to be amazed by people's intolerance of disabled persons.

One store I go to frequently hires disabled adults. It is a great program, and they get to learn basic job skills. Yes, they are sometimes louder than necessary and even, quite frankly, rude. I understand that social skills are part of their disability, and therefore am always sure to be friendly and smile, even when I want to tell them to back off and let me shop in pease please. ;) The other customers are not always so friendly. I overheard one lady complaining to the manager about all the "retarded people" working in the store. She said that she understood that "someone has to hire them, I suppose" but they should be working in the back room, and not up front where the public shops. Okay, to be blunt, you're shopping at Goodwill for gosh sakes, not Nordstroms!

This Monday I went to a different store. I parked my van, which has Peanut's wheelchair lift on the back of it, as well as stickers of our family as little cute stick figures.

A little old lady came up to me and said "Do you really have a child in a wheelchair? Is that what your stickers mean?" I said yes, my daughter has cerebral palsy. She said "Oooh .. the poor thing. That must be so hard!" I fumed silently for a minute, and then explained that she does not need pity, she is a perfectly happy and wonderful child. She looked agahst and said "You mean to tell me that she's not SAD about being disabled? I don't believe it". I said that she probably doesn't even know she's disabled. She is happy and active and smiley and loving.

Then all hell broke loose. The lady went on to tell me that her sister had a "mongaloid child" and she still feels sorry for her sister to this day. The child is now 49 and she says that her sister is lucky the "poor mongaloid" lived that long. Ohhhh hell. So now I take it upon myself to explain to her that "mongaloid" is NOT a term that anyone uses anymore. That the child has Down Syndrome. That the child is probably not a "poor child" unless her mother is as intolerant and ignorant as this lady!!

I shuffled my indignant butt into the store and shop myself back to normal. Who SAYS things like that???

Smiling Beauty

Does this smile not melt your heart? Click on the picture, you can see it in real life size. Those eyelashes, the gorgeous hair ... as my blog is titled, she is definately a New Kind Of Perfect!

School, IEP, Therapy, and More!

I truly think that IEP's were invented to drive parents insane. I have met very few parents who like IEPs, or who don't dislike them. They are frustrating and tiring.

We need to have our annual IEP for Peanut soon. Before we do, I told the teacher that I wanted to meet with her and discuss my goals/hopes/etc. for this year. I don't want to go into another IEP and get blindsided by what they think her goals should be. For some reason they are insistant on trying to get her to eat orally. We are not that concerned about it! We are on a break from feeding therapy, as all it was accomplishing was frustration. So for the school to have an oral eating goal is silly.

Tomorrow I meet with her teacher for an hour. She is new this year and seems very open to discussion. She is helping me get Peanut mainstreamed, which seemed impossible last year. I hope that she'll listen to me about my hopes for Peanut. I want her to be shown more switches and picture boards (PECS) and such. They seem to fight me on things that might actually cost them a dollar or two.

It is so frustrating to be the only person seemingly fighting for what my child deserves! She is such an amazing and incredible being, and she deserves the world.

She's so sweet, even the bugs bite her!

Peanut has two big bites! One on her thigh, and on one the edge of her ear. The one on the thigh just looks like a normal mosquito bite (there are a bunch at her school playground). The one on her ear probably was the same, but now is quite swollen and red. We'll see how it looks in the morning, but I'm thinking I'll take her to the walk-in for some antibiotics. It definately looks worse than a normal bite. Since she can't tell me if it itches or hurts, I have to guess. She has been tugging on the ear all day, so I imagine it's not comfy.

Poor Peanut!

Editted to add: I ended up taking her to the Urgent Care. Her ear was hugely swollen, and there was a red streak heading from it down her neck. The dr diagnosed cellulitis, and started her on Keflex. I am to take her to our regular pediatrician on Tuesday, and to the ER if I notice it looking worse before then. Poor peanut! All this, from a mosquito bite!

In Memory of Stacey

There was a beautiful woman named Stacey that I have had the pleasure of knowing online for about 8 years now. Unfortunately, I never got the chance to meet her in person. She was diagnosed with a brain tumor in 2003, and went on to fight it with all her might. Our dear Stacey lost her battle recently. Please keep her five children in your thoughts, as they struggle to figure out how to live without her. Here is a great article on Stacey.

Entering flu season for sure

I spent 6 hours in the ER on Thursday with Peanut. She was so phlemy that she kept retching hard enough to throw up, and she couldn't keep down her formula or pedialyte. I took her in for IV fluids, and then we went home. Luckily her metabolic blood work looked good, or we would have been admitted.

Then we spent the day cuddling on the couch. Of course, that means Mommy is now sick too! There's no rest for a tired mommy. :(

This morning I decided to give her all her meds first, and then wait 30 minutes before giving her morning pedialyte. She immediately spit up the meds. I re-dosed her cold medicine, hoping to knock off the phlem at least. She has managed to keep that down, so I am going to attempt pedialyte.

As a Mom, I don't think I ever realized how many things I would do that are SO gross, yet have become second nature. Peanut is a big time retcher. She always retches and gags, and sounds like she's going to puke. I know the sound of stuff actually coming up, verses just sad retching. This morning I didn't have a towel nearby so while yelling for Monkey to bring me one, I cupped my hands and caught it all. ICKY!!!

It's going to be a long sick weekend. I need to run to WalMart and stock up on cold meds, and then do the regular diaper/soap/etc shopping. What I really WANT to do is take a long nap!!

Please keep Peanut in your thoughts. If she continues to spit up her pedialyte today, we'll end up back at the ER. :(

What's worse than a snotty kid?

A snotty kid with a seriously overactive gag reflex and dysphagia. The nose gets all stuffed up so she can only mouth breath, so she stops swallowing. That leads to drooling, which leads to more choking and retching than normal.

It SUCKS. Peanut has been in school for one week exactly, and she came home snotty today. I hate that parents send in sick kids! I can understand a slight cold, but the other day one girl in her class was green snotted and icky. Keep the poor thing home, and hopefully everyone else won't get sick too!

I foresee even less sleep than normal tonite. I am tired already, I'm sure tomorrow will be loooooong. Good thing it's almost the weekend! If I have to clean up any more spit up, I might just lose my mind.