Fuck this shit

Alright, alright, sorry about the swear words. Today has been ROUGH.

Lily doesn't really care for her sister. I've tried talking to her about this, obviously, and she has trouble even putting into words why she doesn't like her sister. I'm not going to say "Love her or else!" because 1) it's not going to work and 2) it will likely make her hate her sister more.

So we're talking today about this and Lily says something about how they will never be friends because they can't play and they can't really talk to each other. I, very patiently, start to say "Madi will never have..." and that's as far as I got because the thunderbolt hit me and I started bawling.

Madi will never have friends like Lily has friends. She'll never call or text someone. She's friendly with the other kids at school, usually, but will she ever form a bond of friendship with someone that will last the test of time?

Unlikely.

And yes, I'm crying again so sorry about the typos. And grammar. And shit.

So then the behavioral therapist comes over, who is awesome. She starts talking to me about how I can reclaim my house and that it doesn't have to be driven by Madi and what Madi wants. How I can take control over my life again.

Well, cue another waterfall from me.

It's been kind of a gut wrenching day for me. And then the shooting in Orlando and I'm horrified by this world that I live in. Arguments online over gun control, no mental health, NO Islam and holy shit, can we do something about this? If prayer worked I would be a size 6.

But I digress. (Hey, there IS something that I'm good at!)

That's how it gets you, or me, rather. Going along, through life, as best I can, trying not to screw up too much and ka-blam! One right in the kisser. Someone very wise once told me that I will grieve for my child again and again throughout her life. It's mourning the life I had imagined for her before her diagnosis. And my friends, it is a bitter, bitter pill.

But life goes on, and I pick myself up, with garlic-cheddar biscuits, and keep on keeping on. Sometimes with tears on my cheeks and a bitter taste in my mouth.

My MREs

Why so possessive you ask? Because I haven't served in the military and I'm sure that I'm doing some things wrong, but I figure other people have no idea what these are so this is just a little introduction.

First up - I feel like it's Christmas when I open my MRE bag. Chicken with Pasta in Pesto Sauce.  Ooh lala!

But what other treasures are inside? We'll start upper left hand corner and go around clockwise. We have the empty container, in which the food will be heated. Small packet is squishy processed cheese. Corn nuggets (aka corn nuts). "Condiment" bag. Chocolate pudding powder. (YAS!) Beverage heating bag underneath "Italian" bread sticks. Spoon. Chicken with pesto and noodles. Carbohydrate electrolyte beverage powder. (Lily loves them. They remind me of reconstituted gatorade. I hate them.)

 

Hokay. One of my favorite parts of this - the instructions."Rock or something" Not too fussy. The heater actually works quite well. Chemical reaction, something, again these are great for when you have no power, etc.

The contents of the "condiment" bag.  I'm not really sure what to call it. Again, clockwise from upper left corner: non dairy creamer, ground red pepper, instant coffee (says "pure coffee" on the back, thank Cthulhu), sugar, paper napkin, matches, gum, salt, and wet wipe. Seriously, these things have everything.

Squeezy cheese on some almost 5 year old italian bread. I lived. So far.

Ahhhh the main course. Did not suck. Quite a bit of chicken, almost no noodles. Flavor was... well, I ate it, okay? All of it. So it was not the best thing that I've ever put in my mouth, nor was it the worst. I did NOT eat those two bread sticks. 

I was going to make you imagine the chocolate pudding but in for a penny, in for a pound, right? We're not British, I know, just whatever. hmmmm If Jello pudding made a pudding cake that's what this would taste like. Again, not horrible but it's almost 300 calories for that little pouch so I'm going to see if I can pawn this off on Lily.

Fin.

[Insert self indulgent title here]

I put my sweet, old cat Riley down yesterday. There are a bunch of reasons but I still feel like a dick. I kept thinking that I needed to feed the cat before I went to bed. But no cat.  I heard a sneeze last night and thought it was him.  Turns out that all this time it was Lily.  Almost turned down the cat food aisle at the grocery store. Keep looking for him (so I don't trip over him) when I walk through the house at night. 

I thought about it and I've had cats continuously for at least 20 years.  (I lived in Australia for a year and my cats stayed in Vancouver - if we count that then I've had them since 1989) More than half of my life.

And I swear that the dog knows. He keeps giving me these looks.  It took me a while before I could even think of emptying out Riley's bowls.  I'm going to give his stuff away. The spot where his food used to sit on the counter is giving me little heart aches every time that I look at it.  Sigh.

I held him as he passed and wished him a speedy trip to a better place.

Sigh.

- Crazy Catless Lady

Point Defiance

Because you have to have a snappy title.

So, this kid.

This. Kid.

Madi is still doing speech therapy on Wednesdays at UVA. Even Pedro has noticed that Madi's speech is improving.  Yay!

However.

I'll try and set this up. Madi likes to pick her nose and we normally don't call too much attention to it because then it becomes a game.  But I was trying to get her to stop during therapy and was using a tissue to try and clean her nose.  Then, for some reason, Madi decided to put her feet on the table.  She pushed back in the therapy chair (for lack of a better description) and we were alarmed and ran behind her, which gave Madi the chance to put her feet more solidly on the table.  Then she jammed a finger from each hand, up each nostril and looked at us.

"Whatch gonna do now?"

Okay, she didn't say that but you just knew.

I cannot wait for this behavioral therapy to get started.  Should take a couple of weeks to get things going.  None of us, parents, teachers, etc., have any idea of how to deal with her.  She can do things, but won't want to do them, and that's where we're at.  With our feet on the table and our fingers in our nose.

Habba what?

I really couldn't think of a post title so I went with a Yo Gabba Gabba quote. 

This Madi of mine.

Yesterday, the bus driver told me it took three people (3) to get Madi into her seat.  She wanted to lay on the floor of the bus. 

This morning, I could not get her jacket on her.  She kept on pinching the inside of the sleeve so her arm wouldn't go down into it.  I have no idea where she learned it.  I think it's what the therapists call "an original thought". Brat.

Hopefully, we have a behavior therapy assessment on the 27th. Man.  Her behavior is probably the most challenging part of raising her.  She can be very sweet and lovely and she's learned to hug us when we get mad at her.  But we can't have her being so combative.  We all offer her choices, but she still has to do what we ask.  Is the bus driver supposed to drive with her on the floor of the bus? Of course, not.  Am I supposed to let her walk outside in freezing temps? Actually, I did do that.  Cause and effect and she's half-Canadian. She never complained though.  Little *grumble*

We've tried to set expectations for her and consequences because we know we won't be taking care of her one day and we don't want her to be horrible.  The better she gets along with people, the better for her as well.  That's so hard to teach though.

Oops

We've had kind of a tricky week.

I haven't told Pedro, though he'll find out from here, that Madi has pooped twice in my room. She's gone a minute, definitely less than two and it just happens that quickly.  And I don't mean, just pooped.  It's on the walls, the blankets, etc. It's a poopapocalyse. At least that's what I've named them.

And Pedro has started back at school so it's me and the girls for several hours on Mondays and Wednesdays. But Pedro has to redo a test so it's also Thursday and Friday this week.  I'm going to have to check my Moscato supply.

So I'm not even sure what day it was, I think it was yesterday? I had to go into town to pay some bills and I never brought my phone in with me from the car.  I had a lovely, quiet afternoon as a result.  But it turns out that I missed texts and calls from school.  Madi threw up.  I didn't find my phone until about 15 minutes before she was due to come home on the bus so I called Pedro, he didn't get the call from the nurse because his ringer was off.

Could we look like worse parents?

Oh yeah, and I hadn't sent a lunch in with Madi because I hadn't cooked the night before.  I wasn't feeling well.  And, as life was conspiring against me, I was out of ramen noodles for her.  I sent in a ton of snacks, okay?

So no lunch, no one picking up the phone...

I'm not sure if this was also the day she called her teacher a "motherfucker".  I think this was the day before. I have a potty mouth. I don't swear at Madi but if you've ever been in a car with me, or talked to me for five minutes, you know I swear a lot, just in general.  Well, I was pretty horrified and I'm thinking they think I'm the worst mom ever.

I wanted to touch base with them today after dropping Madi off from therapy. They push the kids in class.  Special needs kids take more time to learn things and sometimes need more of a ... push.  Well the kids get angry and frustrated.  Especially Madi.  Apparently she said "You are a motherfucker, okay?"  The teacher had to leave the room. Then burst into laughter in the hall.

Madi has a pretty limited vocabulary.  So she said a five word sentence.  That's amazing for her.  The subject matter was probably inappropriate.  Cough.  It's a weird thing.  She hardly ever swears at home.  She swears when she's mad, but even then it's rare.  So she has to be quite upset to pull out the B word or in this case the MF word.  And it's wrong, but at the same time, here's this kid that has trouble communicating and she got all of that right??

Sigh.

Onwards. Today they were showing me how she can pick out her name on a name tag from all the other names.  And she says Thompson.  Thomp-ah-son.  But it's adorable.  And she's doing SO well in speech therapy.  She catches on quickly. We're trying to build on what she knows.  I'm so proud of her.

So then I get home from school and I smell poop.  I think it's the cat.  I say, Riley, did you miss the litter box? shooo  He gave me a look.  I don't know what made me turn around and look in the living room but there it was. Mount Doggy Diarrhea.  I know he went before Lily left the house because I was trying to get him back in so he wouldn't try and get on the bus with her. So I know foh sho. K?

I think I've earned a nap.  Peace.

50

I've been trying to do more for Madi.  Help her reach her full potential.  God that sounds corny.  Anyway, since she's receiving the EDCD waiver (I still don't totally know what that means) we can move forward with more therapies for her.  She had a speech evaluation in December and I was reading through the notes last night.  One very sweet part said she was very engaged in the activities and was very social.  THAT's a big chance.  When she was little, not so much.  So that warmed my heart to read.  But then... out of testing scores. If 100 is the mean score of kids her age, she scored around 50. Sigh.  I know she has a significant intellectual disability but it's always hard to see in black and white. 

Pedro and I were talking about this the other night.  Madi was snuggled tight against him, watching a show.  She's only a young child, mentally but that means she still acts like a...young child.  She's still innocent and loves to be held and snuggle.  (and throw her poop on the wall, but that's another story)

I don't know how much things will change with us getting some help.  I've learned over the years to be conservative with my enthusiasm because it never turns out how you might think it will.  And I'm tired of having my hopes crushed.  Should I start writing an emo song?  Good grief.

And some princesses don't appreciate it when you sing the ABC song.