Tuesday, September 30, 2008

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???

Tuesday, September 23, 2008

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!

Thursday, September 18, 2008

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.

Saturday, September 13, 2008

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. :(

Wednesday, September 10, 2008

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.

Wednesday, September 3, 2008

First Day of School

Ahh, summer is really over! The kids first day of school was yesterday. They both had great days, thank goodness!

Monkey is in third grade now. He is such a mature and awesome boy! He really makes me proud. He has the same teacher as he had last year, and we love her! She was thrilled to have us, as it means I will be her Room Mom again. Yes, just call me Susie Homemaker, but I love it!!

Peanut is in the same classroom she's been in for two years, since she turned 3. The class she's in goes from age 3 through the end of 8th grade. It's the only severely handicapped class in the district that goes through junior high. There are about 8 kids, and 6 adults (Teacher and aides). I wasn't happy about her going back to this classroom, as prior to now it wasn't kid friendly. Peanut is the highest functioning kid in her class. Most of the other kids are not able to crawl or play with toys or interact in any way. The classroom was dedicated to that type of child, and Peanut had outgrown it. I wanted her transferred to the same school Monkey goes to, and put in a regular special ed class. I also wanted her mainstreamed for a portion of the day.

Turns out that they have a new teacher in her class this year. She's incredible! The classroom is TOTALLY kid friendly, desks at wheelchair height, etc. Centers are set up, it just looks great. I know the teacher from the past, and I am thrilled with her being the teacher. So for now we are going to stay there. Also, I talked to the Director of Special Ed, and Peanut will be mainstreamed for half of the day every day, starting in October!!!

I am so relieved that everything fell into place. I was really geared up for a big fight against the school district, and have even already contacted an advocate! Now I won't need all that, thank goodness.

Monday, September 1, 2008

Sleepy Morning

Last night was a dreadful night. Some nights, Peanut is just UP. She was really retchy, uncomfortable, and awake. Finally she seemed content, but still wide awake. She wanted to be cuddled on the couch, and loved on. She didn't need toys, just love. But at 2 in the morning I want to sleep! I put her down on the living room floor with a toy to try and get a little rest on the couch, and the crying resumed. Daddy and I traded off who was holding her and who was cat-napping, but in the end no one got much sleep. It's a good thing it's a holiday Monday, and there's no work for Daddy today. That would have been miserable!

Peanut and Monkey go back to school on Wednesday. It has been a fun summer, but I am glad to get back into our normal routine. I think Peanut has grown bored of me anyway, as she is getting fussier earlier in the day now than normal.

Peanut is going to be a KINDERGARTNER!! Can you believe it? She is going to the same Severely Handicapped class she's been in since she turned 3. I am working on having her transferred though, and the school district is really fighting me. I want her in a regular Special Ed. class, where she's not the highest functioning kid. Right now she's just about the only kid in her class aware of her surroundings, much less interactive. I want her around other active, functioning kids! I also want her integrated for a bit (maybe an hour a day?) in a general ed kindergarten class. The school district is pitching a fit. I know that she is not going to learn her ABC's or how to write her name, at least not now. But she IS capable of socializing and sitting with other kids her age. I think she needs that. I think she DESERVES that! So, the school district battle is waging.

I am still trying to figure out how to get my blog all set up how I want it. I will try and post pictures later today if I get a chance.

Thanks for checking in with us, I know our blog is new and kind of dull still. :)