Witty Words Wednesday

This has been cracking Beebs up all week!

Pretty Distractions: lets start with a pink wall

You know what I love about my Hubby? He can come home from a long business trip to a giant pink square in our front room and he doesn't complain. Ok so he says something like "When did I sign up for a giant pink square on our dining room wall?" and I say "When you married me" Then I get a big kiss and he grabs the camera and snaps some shots for the blog.

My sister and I went to the Renegade craft fair in LA this winter and I loved the use of triangles on everything. It's kind of got this "Modern Geometric Native American" feel. It inspired me. Since I want a mid century modern eclectic feel for my front room these triangles would be simple and perfect. I chose to stick to three colors. A peachy pink to bring in the Pretty Chair. Then white and a little bit of shiny gold metallic for some retro elegance.  

This is Beebs cracking up because I said "butt", as in "Please don't take a picture of my butt" I was in my long john PJ's. No one really needs to see that:) 

I was so worried that my homemade stencil wasn't going to work out, but it did! Plan B was going to be tapping off a million triangles, however plan A worked. YEAH! This may look easy to you and ya the painting part was actually time consuming but not that hard. It was the measuring and calculating that was intense! Now I know why I needed math!

 TA DA! I can't stop looking at it! It's so pretty! I am so pleased. It's not often that a design idea in my head translates the same in real life. My room is on its way! Can't wait to put it all together!

Pretty Distractions

May 21st. MAY TWENTY FIRST! Thats how long we have to wait to see the Mitochondria disorder specialist! On one hand I think, well if they are making us wait that long it must not be urgent right? On the other hand that is a long bleeping time!!!! Every second that I don't know I start to go crazy, and when I try to search for answers I see ORGAN FAILURE, BLINDNESS, DEAFNESS, Life Span- MOST MAKE IT TO ADOLESCENCE, REGRESSION REGRESSION REGRESSION!!!!! I find my self saying " I take it back God I'm fine with Cerebral Palsy she won't get worse with cerebral palsy and autism, I can make those better, there is a bit more certainty in her future, I know she will struggle but she will be alive and healthy. I'm good with that. Can I go back to that PLEASE PLEASE PLEASE?!" I hope I am being dramatic and I will see the specialist and he will tell me that sometimes theres no regression or it will just go away and then I will come home and start a Blog called "Mitochondria disorder: don't panic it's not so bad.com" 

Every time I set food in front of Sadie or pack her lunch I wonder if I'm feeding her the right things, will this bagel make her slow or tired? I don't want to change her diet until I talk to the doctor. I have changed her school schedule to a shorter day so she doesn't get so tired, I have lessened the amount of therapy we do each day. I used to want to build up her endurance mentally and physically and now that I know that is not what is healthy for her I find myself looking at her behaviors and everything in a whole different way. She's tired, it's not all weakness, or the spasticity or Autism. She's tired on top of all that. All I can do right now is help her through the day. More snacks. More rest. These little changes have helped her and yet have confirmed that this additional diagnosis is there, in her body and always will be. 

I feel like a breakdown is edging my thoughts. At first it's brushing through my layers like a paleontologist's brush softly getting to the bones. At times I have sat in my room and tried to make myself think through it, get it over with, feel sad, feel sad about what might be. Dig those feelings out, force them out. But before the cold shovel can plunge through, my mind closes. Blank, black nothing starts from the outside and rushes toward the center of all the bad thoughts like turning off an old television set. My mind refuses to go there. I don't know anything. I won't know anything until May 21st.

I have found myself desperately needing a distraction. On a day I was having a rather hard time I found comfort in the new Land of Nod catalog. I know it's silly and superficial but I love design. I crave it. There was a spread on kid friendly adult spaces. I looked around the big formal dining room that wastes the space of half my small home. I blog here and we have our in home therapy in here. It's bare except for the computers and chase lounge I couldn't leave without at an estate sale. The kiddos have named it "The Pretty Couch".  I dove in and started planning and designing. I will fancy up our therapy/blogging room. That is what I will do until May 21st. I will do something I LOVE to do. I will share it with you in my next few posts. You will have to bare with me as I ignore the Disease in my daughter that I can do practically nothing about right now. Instead we are going to have distract ourselves with pretty things. I'm going to focus on making a space we can love to be in. A space practical for us and our situation. This is all I can do to stay sane at the moment and to not be scared all the time. Sadie thinks it's going to be fun. I've let her pick out some artwork for the space I'll be sharing that with you later. So please pretend with me that life is just the crazy normal we have always had, just until I know something, just until May 21st.

Leaving the Sleepover- a cautionary tale

So Your all probably wondering how Friday night went.... It was fun. Full of giggles, dressing up, dancing. Sadie had a blast. It was nice for me too, I got to chat with grown ups while Sadie's friends where always redirecting her when she got distracted. They were so enthusiastic to include her in everything they did. I didn't mind staying an hour later than we talked about, she was just so happy. Then the sleeping bags where brought out. It was already 10:30 and a movie was going to be put on to lull the girls to sleep. 

I knew it was now or never. So I started the exit process. For those of you know Sadie, you know she has this face, it's the sad face. The saddest face you will ever see in fact. Our family calls it "the face" and it will break your heart the moment you see it because it is only made when Sadie is genuinely deeply sad. Social story went out the window. We had a five alarm melt down that ended with me dragging a 45 lbs. child out the door, screaming, crying, kicking, head butting. It wasn't pretty. I suddenly felt like an alien to Kylie's mom (not her fault she was being more then gracious) It was just one of those times where you want the ground to open up and swallow you whole. I just wanted to get Sadie out of there so her friends didn't have to watch her act like a crazed animal. 

I hated it, I almost asked if I could sleep on the couch, but I knew I couldn't give in. Not only did I want to follow through with what we talked about in her social story but Hubby and I made a decision before we had kids that they wouldn't be allowed to spend the night anywhere except families houses. Who knew these hard decisions would come up so quickly! After wrestling Sadie into her car seat I shut the door and quickly, my goodbyes and Thank yous as I peeled out of the drive way (peel out added for dramatic effect). There was nothing I could say to stop the sobbing. I spotted the iPad at the corner of my eye and handed it back to her. Suddenly there was silence, a little sniffling and then "Do you think Baby Hedgehogs are soooo cute?" She held up a picture of a hedgehog on one of her apps. "Yes Beebs Baby Hedgehogs are so adorable" After that all was well.

I don't know that I could have done anything differently, I mean what kid isn't going to be upset if they're at a sleepover and then can't sleep over. However, if I find myself in this situation ever again I will probably bring her social story with me,  usually I don't like to do things that set her apart from  other kiddos but I think I just have to while she's still young. Next I will have to have a HUGE reinforcer waiting for her immediately after ward, and I mean HUGE like puppy waiting in the car huge! If I can't pull off a puppy it will have to be something that trumps a sleepover and then that will be written at the end of her social story. If your not familiar with ABA tactics this probably sounds like I'm creating a spoiled brat but actually the more positive experiences Sadie will have to associate with leaving a party or any fun event the easier it will eventually be for her to leave without the tantrum. It's my job to set her up for success so that someday she can do this all on her own. 

The Birthday party + Social Story

Ok so this year Beebs has been invited to 1 play date and exactly 0 birthday parties. Last year she was a little socialite as far as parties go. I mean we even had to turn a couple down because we were getting too busy. As I'm writing this it just dawned on me that I threw a big birthday bash for Beebs in the beginning of the kindergarden school year. It was kind of the most awesome Bubble Guppies party ever! This year we settled on Disneyland passes. So ok lesson learned. Maybe thats how how kindergarden friends and parents got to see Sadie as a regular little girl and not as the girl your scared to ask about. Who am I kidding maybe it was because the parents got to see me look semi put together instead of the loch ness monster look I have going on every morning at drop off. 

Regardless when Sadie comes home now from first grade and asks why she missed so and so's party on Saturday and why did I lose the invitation, my heart aches a little bit. I'm kind of grateful that she could not imagine not being invited to said party. It of course is always an oversight on my part. I can just imagine what parents think if their kiddo did want to invite Sadie. "How would we include her if she can't walk? I don't want to be responsible for that kind of situation, will her walker make tire marks on my carpet?(well I would think about that ok)" I don't hate parents that think of these things before they don't invite my daughter, I get it, but that doesn't mean I have to like it. So this is why when a mom came up to me last week and said "Kylie really wants Sadie to come to her sleep over birthday party next week. Do you think we could work something out?" I almost tackled her with a huge grateful hug! Don't worry I kept my cool. "Yes, Sadie will be so excited"(while I'm squealing inside). We worked it out where I am going to go and help and then take Sadie home late when everyone is going to bed. 

Sadie is soooo thrilled. The party is tonight! Of course we have been practicing all week on saying goodbye. I have been going over and over with her about how we are not spending the night and that the sleeping part is super boring anyways. I hope pray we can avoid a tantrum. Sadie's starting to get to that age where the other children shrink away when she starts to throw her fits. There are still some of those social separations that are getting more obvious as she gets older. ((((Deep Breath))) It's going to be fun.

Here is the social story we have been working on:

Kylie's party is going to be so much fun!

If I get really excited I can just laugh or giggle 

I don't want to crawl away from my friends when we are having fun.

My mom will be there if I need a squeeze

At nine o'clock it will be time for me to go home and my friends will go to sleep

I won't cry because I had so much fun at the party 

I can say "Goodbye Kylie thank you for inviting me!"

That will show my friends I am a big girl and then I can invite Kylie to my house for a playdate soon!

Valentine Printables

Found these Darling free Valentines printables over at my fabuless life. How cute, right! I think I'm going to put mine on a clip board and hang it:)

When in doubt google a cat pic

In Sadie's homework packet last week, the parents were sent home a heart and told to write a poem or a letter to their child. Your probably thinking "How sweet, what lovely sentiment will Nicki think of?" Actually, my first thought was, When will I have time for that?! (I know mother of the year right here). Of course I completely forgot about it until this morning and we had ten minutes before we had to cram in the car to make it to school. I thought, maybe Sadie won't know I didn't make the stupid card because there will be so many she won't even be able to tell wich one is hers, right? I then had an epiphany. I sat down and googled "Cat with glasses". Sadie won't care about a poem or a letter she will however giggle over a funny cat picture. Hearing Sadie's laugh, giggle or snicker is by far the most heart warming thing so TA DA! This is what Sadie will see among the dozens of hearts in the front office.

Hello

Hello. For those of you just joining us over here at Beebs and Bro, welcome. I'm so glad you've come for a visit. I'm not sure wether to tell you that this is a special needs blog or a lifestyle blog, the truth is we have a special lifestyle blog, for we nether lack our share of special needs nor do I lack the ability admire (or obsess over)everything lovely and share it here with you.

Here you will find our story. A happy story of our sweet little Beebs and our treasured little Bro. This blog is filled with giggles and challenges and sprinkled with clever ideas and pretty things to look at. So nice to have you:)

-Nicki

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