The Irritating Phase

We've gotten to the Irritating Phase of our remodel.

First was the Gasp Phase where the demolition started and we looked around thinking "Oh no...what have we done? What have we gotten ourselves into?" This was a very short phase.

Then came a very, very long Survival Mode Phase. This was the phase where we were living in squalor. Holes in the floor, holes in the ceiling...sitting in our house freezing.

After this phase, came the Frantic Pack Everything Up Phase. This phase was no fun at all. We had to put everything we had into boxes and move it into the garage or the portable storage unit sitting in our driveway. This phase was quickly followed by the Evacuate the House Phase where we stayed in a hotel for five nights while the floors were put in. The hotel wasn't half bad.

After the Evacuate Phase was the Hopeful Phase. This is the part where we moved back in, saw our new floors and things looked much better. The appliances, counters, cabinets starting appearing and all was good.

Now we find ourselves in the Irritated Phase which threatens to cross the border into the Extremely Irritated Phase. This is the phase where a lot has been done, but nothing is finished. Our contractor has mainly moved on to another job site while he waits for the cabinet guys to fix all of their errors so that he can put in the microwave and the range. In the meantime his equipment is all over our kitchen, living room and dining room. I can no longer see my beautiful kitchen tile or hardwood floors because they are covered up with sheet rock, tarps, what-have-you in order to protect the floor for when the range gets moved into position.



Much has been done, but only our two bedrooms are habitable, and none of our rooms are completely finished and put back together.

I'm hoping to get to the Party Phase soon. I'll let you know.

Nobody Knows the Trouble I Haven't Seen

I walked into the house this morning and this is what I saw....A Window! Which was so exciting! Much better than the plywood covering the hole in the wall. My excitement was short-lived, however.

It was short-lived because as I walked up to the window I saw the view I would see if I were standing at the sink.
I am five-foot-two.
This will not do.

A five-hundred dollar mistake
This I cannot take.

We are going to need to order a new window. A picture window with no bar through it.
This window is going to end up on Craig's List.

The rest of the kitchen looks like this.


At least Kellen is happy.

Neighbors

My backyard is my sanctuary...and fully fenced on all three sides. It's quiet and it's private. Since all the houses in our neighborhood are ramblers...no one can see over our fence into our backyard. I pretty much spend all summer there. One of my favorite things to do after a long day is to walk around my backyard with the hose and water my plants. It's relaxing. It's my sanctuary.



This is our fence in the backyard. We replaced this side a couple of summers ago when the old fence broke down. On the other side of this fence is a rental house. We've lived in our house eighteen years, so we've been through several interesting neighbors in the rental house. Currently the neighbors in this house only speak Spanish.

Last year our rental neighbors brought home a cute puppy. He is a pit bull. He got big really fast. Before we knew it, the neighbors had a second pit bull in their backyard. Now that the weather is getting better I'm in my backyard a lot more...the dogs hear me and attack the fence. They have ruined a couple of the boards already. Every time we see another broken board, Sweet Husband knocks on the neighbor's door and they replace the board.

I have strawberries and flowers planted next to the fence, but I'm afraid to garden there because of the dogs loudly barking and hitting the fence to try to get to me. Yesterday I noticed they had a third dog in the backyard. This one looks like a Labrador. I can see by peeking through the fence that the dogs have completely destroyed the grass back there and spread garbage. I've also noticed that the neighbors have begun to grill their burgers in the front yard instead of the backyard.

Yesterday afternoon as I was driving home from the store, the neighbor's garage door was open and I saw several roosters in a cage.

Sweet Husband called the landlord last night.

Tell me your neighbor stories and make me feel better?

Disablism in My Face

Yesterday was Blogging Against Disablism Day....and so it was very ironic that I went to one of my (formerly) favorite blogs and read that one of my (formerly) favorite bloggers had just had a miscarriage. I felt much compassion towards her while reading her post...until I got to the following...

"We're hoping that we get some answers from the pathology report, that we find out that there was some chromosomal defect and that we were spared unspeakable pain down the road. Anything so we can feel like this isn't the worst that could possibly have happened."

I was speechless.

Disablism in all it's glory...and it just so happens that it was posted on Blogging Against Disablism Day.

What a perfect example of disablism.

I wanted to comment so badly...but I didn't. I don't feel it's right to kick someone when they are down. I'm sure she felt like people would relate to what she wrote and find what she expressed justified. Of course it would make a parent feel better if what they lost was "defective" and not "perfect." Disablism.

It hurts. It hurts that there are so many people out there that feel that it is better to be dead then disabled. That children with disabilities bring "unspeakable pain" to their families.

I wish this woman well and hope she has a nice life...I just don't want to read her blog anymore.

Thanks everyone for letting me get that off my chest.

Blogging Against Disablism

I recently read a good article about disablism. It made several valid points:

Most people haven't heard of disablism, or if they have, they think it is a silly word which means society is not being "politically correct" enough.

Even if people have heard of the word...they honestly don't believe disablism really exits.

The majority of discriminatory behavior is done unconsciously.

In my work with young adults with disabilities as well as in my experience parenting my own 17 year old son, one of the ways I notice disablism the most is when we don't give people the opportunity to communicate in their own way and in their own time. Somehow we don't realize how incredibly disrespectful it is to not give someone who needs time to process what they are going to say....time to process what they are going to say. We are uncomfortable with waiting in silence. We try to fill it up. Or worse yet, we just move on. Because we fear the person doesn't understand, we may say the same thing a dozen different ways causing the person to become overloaded and shut down.

Children with communication delays learn early that most people won't give them the time they need to answer a question...so why bother? Just learn to smile big.

Disablism is real. It's all around us. Let's bring attention to it. Let's examine how we can make changes. Let's start with ourselves.

(By the way, according to the spell check on Blogger...disablism is not a word...hmmm.)

The R Word

The R word...

No, I don't mean Revolution
I don't mean Recession
I don't even mean Racism.
I mean R*tard
I mean R*tarded

It is a hateful word used by bullies.
An archaic, hurtful word to demean, torment and even segregate people.

Why do we tolerate it?
Why do we overlook it?
It is not acceptable.

If you don't believe me...ask someone with an intellectual disability what they think of it...if you dare.

Andrea writes in her post Don't Say that Word:

No, it’s NOT “just a saying”. It’s an insult stemming from prejudice. Using that word in such a way continues that prejudice.

No, it’s NOT “just a joke”. Using it continues the abuse of disabled people by ridiculing and Othering them.

Please read her post in it's entirety here.

Watch Soeren's speech here.

Join the R Word campaign here.

Old Fart

Sweet Husband is working graveyard shift at the hospital this week, so this afternoon I took Kellen out to Panera for lunch so S.H. could sleep in peace and quiet. I brought a magazine for me and some art supplies for Kellen. That way we could hang out for awhile after lunch. Now that Kellen is feeling better, I think it is good for him to be out in public as much as he can tolerate. There is so much more to look at and experience then there is at home.

As I was reading at our table next to a sunny window, I overheard an old man behind me grousing about people coming to coffee shops, buying one cup of coffee and staying all day. He sounded like such a Old Fart. It is certainly not bad thing to be old (consider the alternative!)...but an Old Fart is another story. This man sounded like the epitome of an Old Fart. Stuck in old ways of thinking. Judgmental. A voice that carries...not realizing (or not caring) that other people can hear him. He must be such an unhappy person.

I was thinking to myself...why do some restaurants and coffee shops have free wi-fi it they don't want you to hang around? Why should he care about something another person does that is so inconsequential? I'm sure he is one of those people that thinks the "world is going to Hell in a hand basket." ...and it all starts by spending all day at a coffee shop.

Dear Lord, may I never become an Old Fart...and if I do...well...help me to keep my Old Fart Thoughts to myself. Amen.

Groundhog Day

I interrupt Winter in order to bring you Summer. Why? Because I'm sick of Winter. Grab a tall glass of lemonade and join me?

Need a Laugh?

Head on over to The Quirk Factor where Mommy Dearest has posted, "Your School District Might Be a Pain in the Neck if..."

The line that made me laugh the most was: Your school district might be a pain in the neck if the school nurse sends your child home because the teacher has a headache.

Just for the record, I do not consider my child's school district to be a pain in the neck (or anywhere else)...but I swear that this has happened to us!

Semantics

Semantics: The meaning or interpretation of a word.

Words are interesting things. They are tools and they are more than tools. Words can be simple tools like hammers or axes, but they can also be complicated tools like those used for delicate surgeries.

When I am in a meeting or having a discussion and another person says something like, "Well, let's not get into semantics here..." it feels as if they have taken their hammer, smashed the delicate surgical instrument and brushed it off the table as if it were some filthy thing to be gotten rid of in a hurry. It's dismissive. It's as if the person is saying that shared meaning and interpretation are unimportant and not of value.

In some situations, yes I suppose most any word will do. At other times it is important to choose carefully and say it right. Words are powerful, words are complicated and sometimes intricate. Words can shut me down as swiftly as pulling a lever on a giant machine. Words can open me up so that I can listen and understand.

Words are interesting things.

Saying Goodbye to 2007

Dear 2007,

Just a few more hours and you will be history. I'm sorry to be so blunt...but I won't miss you. In fact, I will be happy to see you go. I've learned a lot from you, and perhaps...in time...I will look back upon you fondly, but not now...not yet. Like a winter wind that cuts through to the bone...you have been harsh. You have forced us to huddle together in our home...looking out the window and reflecting...but hardly venturing out. It has been good to slow down a bit and yes, it has been helpful to reflect...but enough. Enough.

May we not forget the lessons that you have brought. May 2008 be more kind.

In the mood to reflect? Check out: 5 Powerful Reasons to Make Reflection a Daily Habit, and How to Do It

I Do Not Like Them...Sam I Am

Yesterday? Someone found this blog by searching on "I hate IEP meetings." I had to laugh when I read that. Was someone looking for a kindred spirit? Was some frustrated parent wanting to find a place to go, read, and feel better? OMG, could it have been a tired, burned-out special education teacher? I hadn't thought of that.

Does anyone like IEP meetings?

Don't answer that. I may not let you come back here.

The best thing I can say about IEP meetings is that sometimes I don't mind them. That is usually when they are for some other kid (not mine), when I attend as a support to another parent. Then they aren't so bad. Not quite "fun", but not so bad. Except when the other parent yells at her child's IEP team and makes them cry. I've had that happen a couple of different times. Buttons are pushed (intentionally or unintentionally...it doesn't matter) and suddenly the parent loses it and spews the venom that only someone who feels their precious child is being maligned can spew. That's when I look down at my notepaper and try not to make any eye contact.

Say, have you ever read Ten Ways to Have More Fun At Your IEP Meeting? An oldie but a goodie. Also try IEPs by Dr. Seuss.

To the person who searched on "I hate IEP meetings." I hear you. You are not alone.

Just Some Things That Bug Me

1. Butt cleavage or the top of a thong showing above someones pants. (I'm not sure which is worse.)

2. People who walk down the sidewalk pushing a shopping cart full of groceries, then abandon the cart at a bus stop or in the parking lot of their apartment complex.

3. Moms who have toddlers at the grocery store or park and spend the whole time talking on their cell phones instead of interacting with their kids.

4. People who park on their lawn. How ghet-to!

5. People who talk to Kellen with a high-pitched voice usually reserved for talking to babies.

Go ahead...what bugs you?

Customer Service Rant

Mind if I rant?

We are putting on a workshop tonight at work for around 35 people. I called a restaurant last week and ordered pastas and salad to be delivered this evening to feed everyone. They called me back to confirm the order and everything was set. Late yesterday afternoon I get a voicemail from the restaurant saying "Sorry, we have to cancel your order. Our roof is leaking and they are coming out to fix it tomorrow and they will be turning off our power." That was the end of the message.

Great customer service, huh? There was no offer to help us figure out another plan. No offer to make it better by offering a discount on a future order. NO NOTHING! Just "We have to cancel your order." I am kind of shocked.

Now I get to scramble around for an alternate plan. Wish me luck!

They Have Spies

8/22/07

Dear Mr. and Mrs. Reimer,

We have gotten a note from underwriting at Grange to find out if Kellen has obtained his drivers license yet or when does he expect to become a licensed driver?

Please give us a call and update us so we can inform the company.

Thank you for your help,

Sincerely,
Cookie Campbell
Ms. Insurance Agent
***********************

Sweet Husband's response:

Dear Cookie,

You do not have a policy BIG ENOUGH to cover our son.

Respectfully Yours,

The Reimers

Someone Call the Wha-a-a-ambulance

As mentioned earlier this week, Kellen is on new medication for anxiety that is causing him to obsess about food. He also seems to have lost much of his drive to be independent. As a result, not only is he constantly hungry, instead of getting himself something to eat or drink, he incessantly tells me he is hungry or thirsty. I do not think he will be able to remain on this medication...he will be 200 lbs. and/or it will be the slow death of me.

I worked a full day yesterday and then came home so that Sweet Husband could leave for a 3:30-midnight shift at his job. From the time I got home, Kellen was asking me for something to eat or drink. After he had eaten a full dinner and was still asking for more, I had to tell him the kitchen was closed and he needed to go to bed. "Did that work?" (you ask). "HA" (I answer). Finally I turned out all the lights in the house, borrowed my daughter's laptop and locked myself in my bedroom. I holed up with my television, remote control, borrowed laptop and a half bottle of water. "Did that work?" (you ask). "HA" (I answer). Kellen proceeded to knock lightly on my bedroom door for about an hour (or so). Sloooow torture, I tell you.

Due to all of the above, I woke up this morning feeling extremely tense. It is not good to wake up in the morning and feel worse then you did the night before. Not good, I tell you. After coffee, a pedicure done by DQ (her birthday present to me), and a relaxing bath, I now feel more like a human should.

Wish me luck, only a few more hours until Sweet Husband is taking sixteen days of vacation.

Anyone else need to whine today? Misery loves company. Feel free to whine in the comments section. I swear...you'll feel better.

R-E-S-P-E-C-T

At work yesterday three of us got on the subject of talking respectfully about people. Two of us have sons with developmental disabilities and the third person is someone who is new to our organization and also new to the field of disabilities. There is nothing we like better then to run across someone with a real heart to learn!

The conversation started about how a child "wouldn't look people in the eye" and "does that mean she may be on the autism spectrum?" From there it went into the use of the word "wouldn't" in this situation. We explained that it probably isn't that she "wouldn't" look people in the eye, but maybe she "can't" look people in the eye. No, it's not that she can't but that she needs support to look people in the eye. It could also be that looking people in the eye is much further down the road, or not even all that important in the grand scheme of things.

It used to upset me when Kellen would come home from school with a note that said, "Kellen refused to ____ today". What about, "Kellen chose not to..." or simply, "Kellen didn't..."? Our kids have special needs, they aren't necessarily being willfully non-compliant. Ewwww....another word I detest: non-compliant.

Respectful language goes beyond person first language (putting the person before the disability), it's all about talking about, and with, people in a respectful way: preserving their dignity and advancing their reputation.

Stranger Than Fiction

I was reading a fiction book the other day for my book club and ran across a passage where one of the main characters was retelling a story from her childhood. She had seen a boy with a developmental disability do something inappropriate and she went home and told her dad. She told her dad because she knew it would get his attention and she wanted his attention. What she failed to tell her dad was that the boy who had done the inappropriate thing had a cognitive disability. The father got very angry and went to the boys house to chew out his parents.

It was strange reading that passage because it brought back a memory of something very similar which happened to us a couple of years ago. Kellen arrived home on the school bus and about fifteen minutes later there was a knock on our door. Sweet Husband answered the door only to find a very angry African American woman standing there. She started to go on and on about how our son had "spit" on her daughter at school and yada, yada, yada. Dear Husband let her go on for awhile and then called Kellen to the door so that she could see that he had Down syndrome. He also explained that Kellen didn't know how to spit quite yet and asked if he may have been blowing raspberries. The mom was somewhat embarrassed and apologized and went back home.

I was really upset when I got home and heard about this. I felt very violated in my own home. How did she know where we lived? Why would she come and knock on our door instead of just asking her child's teacher what had happened at school? What was the big deal about blowing raspberries? Why did she jump to such a huge conclusion instead of finding out more information from her daughter? What would have happened if our son's disability had been an "invisible" one?

Family Stories (part one)

"You must be crazy! Why did you have this baby?" screamed the hospital interpreter.
As part of my work with families who have children with special needs, I often get to hear their fascinating (and often heart-breaking) stories. Mrs. N. immigrated from the Ukraine to our area about a dozen years ago. In 2000, she had just given birth to her third son and the hospital had called for an interpreter to help share the news that her baby was born with Down syndrome. Instead of simply interpreting what the doctor said, the interpreter also berated the mother for giving birth to a baby with a disability (as if somehow this "tragedy" could have been prevented). This was someone from the family's own culture who contaminated and complicated the parent's adjustment process with her own prejudices and biases.

Over seven years later this experience still haunts the mother and as a result she worries over her son more than most parents of children with special needs. However, despite the difficulties Mr. and Mrs. N. have with the english language, they continue to reach out to people and agencies that can support them in their advocacy for their son. They feel very strongly that they want their son to be enrolled in a general education classroom with opportunities to become friends with classmates without disabilities. Maybe some of those kids will grow up without the prejudices that this interpreter had?

Syndrome Syndrome (part 2)

May 1st was Blogging against Disablism Day and I posted this. Well, I guess I'm not done with the subject. It got me thinking about a day a few years back when I happened to drive Kellen to school and walked him into his busy general ed classroom. His regular paraeducator was sick and so there was a substitute. Here is how the exchange went:

Me: I'm glad I dropped him off today, I can take a few minutes to tell you about Kellen.

Perfect Para: Oh that's okay, I've worked with them before.

Me: Oh...you've worked with Kellen before?

P.P.: No, I've worked with Down syndromes.

My mouth dropped open and I think I gave her a little, tiny, piece of my mind. Not a large piece...afterall...she was going to be working closely with my son all day.

I tried to give her some helpful hints to make her (and Kellen's) day go smoother, but she felt that he would be like all kids with Down syndrome and therefore she didn't need to know what made him unique. I find it frustrating when our kids aren't allowed to have unique personalities. They aren't expected to have their own, individual gifts and talents, preferences, and things that motivate them. I kind of hope Kellen gave her a run for her money that day..my bad.