School Picture

Little Miss Smirker. 4yr old pre-k picture/2015

imageWe had Ryan’s parent teacher conference last week. We are asking for another year of pre-school next year, but a less restrictive placement. So we want her Teacher to challenge her over the next 8 mos. so that she can hopefully manage the more independence placement. I will work with the District to plead our extra year of pre-school case. Late summer b-day, brain surgery “start over” and psychadelic drug wean. Fingers crossed they agree next May.

Her new pre-school would be a half day special Ed program and I can send her to ABA pre-school privately in the afternoon. More driving for me, more $ out of pocket, and hopefully more inclusion and challenges for her.

This year Ryan is the only child in her class not in a wheelchair.  The other children are all also non-verbal and they are all boys.  We LOVE these fellas and we want only the best for them, at the same time we believe that Ryan needs stronger peer models, and I want her to be around more little girls.  Though, my jokes about her being the prettiest, tallest, smartest, most talkative girl in her class would not land as well, if she were no longer the only girl.  Micah would tell you they don’t land very well as it is.

Stay tuned, tomorrow I may bore you with some 2016 special needs/medically fragile health insurance gripes.  Tis the open enrollment season!


I just wanna Decorate, another Christmas Season!

  1. I am so jonesing to decorate the house for Christmas and I do not want to wait until the day after Thanksgiving. I do not want to wait.

Being an adult is hard enough. So I’m not going to wait anymore. We haven’t decorated for Christmas since we moved to TX, I don’t even remember what we have, and like Ryan’s clothes, I have bought more on sale over the years. So it will be a Punky Brewster/hodgepodge theme and I will love every second of it.

Here are some pictures of the finally finished playroom and winter Ryan!

Almost Done!

This will be Ryan’s big Christmas gift this year. I have been battling the weather and the level and I am almost DONE!

I’m so excited. Excited to be done, excited to see her reaction, and excited to teach her how to play with the kitchen. I really think that she is getting close to understanding it!!

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Happy Halloweek!

I dressed Ryan all week in the spirit of Halloween, and tomorrow is the big day at school. I am her room Mom, so the party came down to me this year.  No big deal, #1 I love it, and I have the time  #2 I love it and there are only five kids in her class, so it isn’t much work to coordinate.  I made up a few games, fingers crossed they go over with the other kids.  All of her classmates are multi-needs so I’ve over thought it all of course.  I want it to be inclusive and Halloweeny and not baby, yet achievable.

More of the party and a picture of little Miss in my favorite costume ever tomorrow for now welcome back to our crazy!

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a project


Paint 46.00, portable bar 10.00 at a garage sale. Success??? Still up in the air

below, my first foray in to chalk paint, also known as Man is this stuff thick!

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When we decided to make our house’s living room and dining room, we did it to keep Ryan safe and visible. The old dining room was connected to the kitchen, so as you know we had the adjoining wall knocked down and the small dining room, became a cozy sitting room.

The old living room is sizable, so the dining room is kind of huge.  We have a table for 8, two tall cabinets, and two buffets in there right now. You would think it would be too crowded, but it isn’t.  Hence I am about to add this bar cabinet. We still have space, we like to drinks,  it closes, (no little hands) and well it was $10.00.

So here is the project that I have been doing, rather than paint the interior trim. I painted the cabinet in the garage while listening to Orphan Train, which was a great book and kind of my favorite thing on earth to do

Less you think I am a total laze about, I also got a few fillings, need a few more, made Ryan’s Halloween costume, It is the cutest thing ever, can’t wait to share soon and I am working on getting the laptop company to reimburse us for our losses and the laptop itself. Fingers crossed.

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Some snaps of our gal, she wanted me to share that’s family is golden.  Special thanks to her cousin Katie Roe, who ran a Marathon in her honor. I made some Halloween decorations for her classroom and we all started wearing scarves, it is so chilly!
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Oh no you won’t, & Oh yes I did!

Ryan likes to pull at (out) her g-tube. If she is not wearing a onesie, she will look at you, raise her shirt and put her hand to her button, and stare us down. She likes to mess with us. If you say, no-no, she laughs and runs away. If you sternly say her name, she looks at you, laughs, and pulls it more.  She pulls the plug out and plays with the stopper.  She is a stinker.

I would think it hurts to pull? I guess not. Her site is clean and keloid free so I don’t think she is pulling it because it bothers her. I think she is pulling at it, because it bothers us, as I said she is a stinker, and to her it is a game.  Like her new favorite, running in to the street.

So today, she pee’d out again at school and they didn’t have an extra onesie. So I picked her up in just her shirt and pants. I distracted her for hours with errands, a visit to Gma’s work and a park trip. The distractions worked until we got home.  the pulling commenced and I was tired of playing the game with her. Sure if she pulls it out I can put it back in, but I don’t like too.

So I put her bathing suit (out, in a pile of clean clothes already) on over her jeans and shirt. Problem solved, Ryan 0 – Mommy 1

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Mucah got home from work and didn’t even notice.

A Leg Up!!

image image imageOur Pickle’s pesky sensory processing issues, as demonstrated in the wearing of leggings.

Tights are a no go, and it’s too cold for shorts these days.

So we adapt and let her be, no skin off of my calf 😀

Last call

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Last call for those cute summer dresses.  No White after Labor Day does not apply to four year olds.

Fall is coming and while Ryan will now leave shoes on, she hates to have her left calf covered. Silly sensory Goose, she kind of looks like a wannabe 90’s gangster kid at the mall if I put her in leggings. She will quickly pull her left pant leg up to her knee and leave the other down. I will try to capture a photo tomorrow.

In the meantime a recent fashion round up.

The feels of the day.

I had a late night talk with a friend last night. She has a teenage gal, who is also on the spectrum and is also non-verbal. Our talk was actually about her life, and I was trying to be a good friend and listen, and offer what insight I could.

Something that I said to her, has been haunting me all day. The context was getting people to understand your feelings. I told her that it was totally understandable to be upset, because at this point her daughter is her daughter.  That sounds weird right? Of course her daughter is her daughter. This Mom loves her daughter. Lives for her and fights for her all of the time. The center of the comment is that her daughter is not likely to “get better”, “snap out of it”, or “catch up”.

And if I am honest, neither is Ryan

Today I had to use the bathroom.  I had to, and Ryan was running around the house and then she started crying.  Really crying (she has a huge pain tolerance and does not cry easily).  I feel horrible, but I had to use the bathroom.  I run to her and I don’t know where she is hurt. What she hit.  How it happened.  My four year old can’t tell me.  MY 4 YEAR OLD CAN’T TELL ME! She doesn’t point to her head or rub her arm.  She wiggles away when I try to inspect her, much less console and then she is so overwhelmed she starts to bang her head on the floor.  Now I am crying too, but I had to use the bathroom.

This is the slippery slope of my grief

How do you accept that grief, accept that this life is the rest of your life. How do you relate to your friends who complain about their kids asking them so many questions or what discipline protocol they are going to enact. No one gets you. No one seems to understand, that you are serving a life sentence when you are the mother of a child with severe cognitive disabilities. You practically kill yourself to make your child’s life as happy as possible, meanwhile you are devastated that yours’ feels over.

I get sad when I pass restaurants or see a group of strangers hanging out, at the mall or a cafe. Commercials of young happy couples kill me, and that car commercial that says “when you were you” is the worst.

I tried to talk to Micah about it. I tried to explain that as a Mom, especially a stay at home Mom, what you generally talk about with your friends are your kids. I feel horrible that sometimes I don’t want to talk to my friends at all, because just talking to them about their kids makes me sad.

I know that to not feel this way I need to get out more, do things for me, find folks like me, talk to a Doctor, but all of that just feels like more work and band aids. I want Ryan to tell me she bumped her head. I want her to at least understand the question and point to her noggin.

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