Bill of Rights for Children with Special Needs

I pulled this from another website, it's nice to know people are feeling the same way you do.

We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to blast Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Just Playing Around

Why who do we have here?Well it's sheriff Bella, out to catch the bad guys.
Like this troubled gansta pirate.
Doesn't Bella look like she is having the best time dressing up? Okay maybe it doesn't help that she was anxiously waiting to eat, and instead of feeding her mom was making her wear funny hats. Oh the abuse.

Words to Remember

I finished painting the canvas to hang in our sitting room.
It's the words to our wedding song.
Just a little inspiration for us as we get ready every day!

New things to learn

We have been working on "drink" and "food" now for a couple of months. I am fairly certain Bella knows them both by word and by picture. Now we are going to add a few more to her repertoire.

Bed
Bath
Play Gym
Blanket
These are things that we are learning what the picture means, so that eventually she can choose them when the different pictures are shown. As it gets warmer out we can add her swing and the choice to go for a walk.

Two Ongoing Projects

Remember that blank space I was trying to fill in our sitting room, above the two chairs. Well this canvas will eventually go there once I finish painting it.And this little project is something I bought supplies for to have finished by the past Christmas. Doesn't help that I didn't start on it till March, so I am trying to get it finished in the next couple of weeks to unveil this coming Christmas.
I have many other projects I want to start working on. But I feel I should finish these up before I start anything new. And as the weather warms up we start talking about tackling our very large projects, outside and inside.

Our new play gym

We finished putting the pvc play gym together a couple of weeks ago, and then I have been randomly hanging different toys to see which ones will work the best for Bella to play with while laying on her back.

Bella really seems to enjoy her time under the play gym, and moves around, rolls around, and spins around as she plays. She really isn't grabbing her toys yet, might be because one hand is usually in her mouth, but she is having a good time batting at them.

Happy St. Patrick's Day

From one naughty little leprechaun. I mean St. Patrick's Day might be an exciting time, but do we really have to wake up at 3 am for 3 mornings in a row and then not go back to sleep.

A reason for the bigger house

All of Bella's equipment.

We got a new piece to add to the collection. This is a stander, and as in it's name, it helps Bella to stand. Basically it makes her bear weight on her legs. She does well in it.
Except, no matter what she is doing, she loves being upside down.

Fun and Games

We still have an ear infection. I am trying to get her on stronger antibiotics, hopefully we can pick something up this evening. Granted I think the ear infection is the only thing left we are dealing with, so Bella is in better spirits than last week, but still not 100%.

Bella has a favorite game. She has always liked looking at her right arm in the air. In that past month or so, she has started to actually move that arm around. And in doing that we found a game called "bump ditty" that she loves. It's a little song from preschool that she can move her arm to. It's very complicated and goes like this:

Take your hand and go like this

Bump ditty, bump ditty, bump bump bump

Bump ditty, bump ditty, bump bump bump
She also gets a kick out of the dogs. For the longest time they didn't care about each other, and now are starting to pay attention and in a very limited way play with each other. Bella thinks Elle's face is funny.
Or maybe it's more that Elle's tongue is ticklish. But it makes her smile.
I just wish Bella would keep her tongue in her mouth when the dogs lick her...........nothing like Frenching a dog!!

Getting Better

Everyone please knock on wood for me, as I think we are finally getting over whatever it was that Bella had. The past two nights she has pretty much slept through the night, or at least the coughing isn't as much. She has still been crabby by the time 3pm rolls around. But I think she is still a little behind on sleep and the day wears on her. I decided she definitely needed a nap today, so I broke down and gave her some benedryl in her milk. She is sleeping away upstairs. We will see if she is in a better mood once she wakes up, I am really hoping she is. Because a week plus of fussiness, is just too much for me.

The kitchen - part 1

I call this part 1, only because I'm not fully in love with it yet. There is still too much of the same wood tone going on in the kitchen. So you will have to stay tuned to see what I come up with. Not to mention I am still lacking some dressing up of the soffit and window over the sink. And don't ask why I forgot to take down the four towels hanging from the oven. No normal person needs four towels, except apparently me.The kitchen before.
After.
Before.
After.

Because of my lack of counter space, I brought in the black buffet from the dining room. I hope to pick up a buffet at some point that I can paint white and keep in this spot, so the black one can return to it's rightful place. But it works for now, as long as you don't stare at the back too much, as it's just the cheap old paper board that gets nailed to the back. Also notice the white fridge standing out like a sore thumb.
Old light fixture.
New light fixture. And what you can't see, is that there is now a nice spot on the ceiling that wasn't painted. So I will have to figure out how to match the white color and get it painted. Maybe I will luck out and find the old color in the basement.
So for our minor kitchen makeover we spent:

paint - free (leftover from the master bedroom)

pendant light fixture = $20 from Lowes

curtains - $50 from overstock.com

curtain rod - $20 from Joanns

Ceiling Fan - $100 from Home Depot

Grand Total = $190

The Chair

I have been moving this chair around for as long as I can remember. I believe I used to do homework on it back in grade school. It went to college with me, and then followed me to Kansas City. Jesse has always wondered why I kept it. Mainly because it has always looked like this, no chair padding, and the worn out stain. I just happened to like the lines of the chair and one day wanted to fix it up.

Well the time has come. I finally went and picked up upholstery fabric and created a seat. I also stripped down the varnish so I can re-stain the chair. I am going to keep it the same color family it was in. Problem being, I want to stain it when I can open the windows or have the chair outside, so that part will have to wait for it to warm up.

But for now, the chair resides in our bedroom to collect clothes. I don't know if anyone else out there is like me, but I'm not the type of person that washes everything if it has only been worn once (jeans, sweatshirts, jackets, etc). Yet I don't like to put it back in the drawers with all the clean clothes. So usually I need a chair, or bench to collect the worn, but not dirty clothes. It's my little quirk.

The realities of Bella

We are not happy.

Bella is 2 1/2 years old. She currently only has 2 upper teeth and 4 lower teeth. Being that she has low muscle tone all over her body, I wonder if that also affects how her teeth come in? But to say her teeth are coming in slowly is an understatement.

She is currently working on a lower tooth. And has been working on this same tooth for the past 3 weeks. I am pretty sure we can blame the teething for the bouts of diarrhea, and the sporadic feeding/drinking that have been off and on for the last 3 weeks. Not to mention the double ear infection and the waking up 3 times a night coughing because she has so much saliva that pools in her mouth while she sleeps, which has been happening for about a week now.

So needless to say, we are really hoping this tooth comes through sometime soon. And very excited, no sarcasm here, for the rest of her teeth to come in, which she will probably be working on until she is 5 years old.