CP Humor

1. "I'm not krumping, I have cerebral palsy"
2. "It takes talent to trip over nothing...or CP...that'll work too"
3. "Some say disabled but I say I'm EXCEPTIONALLY abled"
4. "CP. To some that stands for Cerebral Palsy. For my daughter it stands for Cutie-Pie"
5. "QU_T!" I will have no part in it"
6. "My brain has cerebral palsy, I do not"
7. "I understand you...you're just boring me to death"
8. "I can do what you can, we just do it differently"
9. "I don't need my legs...I've got wheels baby"
10. "I might not always be able to control my arms, but I make lookin' gangsta easy"

***My confession -- I came up with four of these "quotes" (yes, I crack myself up hahaha). Can you guess which ones??

Feeding Self

HOLY SMOKES PEOPLE!!!!

 

This has OFFICIALLY been the FIRST TIME...did you get that?

 

FIRST

 

FIRST

 

FIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIRST TIME

 

Jocelyn has EVER tried to feed herself!!!!

 

Being able to eat independently is what most of us take for granted each day. We cook something up for ourselves, grab something from drive-through, pop that favorite piece of candy in our mouths or drink that unbelievably delicious drink and go on about our business.

 

For Jocelyn, she has trouble with eating and drinking because of the lack of muscle coordination/control, and she also rarely demonstrates that she's hungry or thirsty.

 

Currently, we feed Jocelyn three blenderized meals a day along with four 8oz water flushes. During one of those meals, usually its lunch or supper as she is awfully nausea during the mornings, we attempt to spend 10-15 minutes at the beginning of her meal to have her at least taste something, touch food or even open her mouth at all. We have learned not to expect her to do anything and make this her "food play time" and absolutely view it as a time to do whatever she wants with food. Trust me when I say this was (and continues to be) a tremendously difficult thing for us to learn because we want her to eat and drink on her own so badly! We know if she could eat and drink that she of course would. What kid wouldn't love to down a cupcake or fries? I generally do most all of Jocelyn's feedings and I've had to learn the the hard way that I can't control this issue and to be patient! 

 

I push Jocelyn to try things that she's put off by such as veggie straws (she hates the texture of carbohydrate type of foods but will tolerate tasting the ranch flavor), but I've learned to only do it as she will allow since we are trying to teach her that eating is an awesome part of life!!! It hasn't been until recently that she enjoys and wants to drink from anything at all. Now, throughout the day Jocie tries to drink from a plastic water bottle. She typically only gets her mouth wet but sometimes she really does get a drink, and she even tries to hold the thing with both hands -- DOUBLE SCORE!!!

 

Tonight Jocelyn surprised Justin and I both. As we started her tube-feeding, I offered her some smooth strawberry yogurt. She didn't want to open her mouth to taste any of it (pretty typical) but after I put a tiny bit on her lips and she licked it off, she opened her mouth for more. After about three times of that, she wanted to put her hand in the container and she NEVER does that -- its a sensory issue. Next thing we know, she is putting her hand to her nose and smelling it and then BAM! She puts her hand in her mouth and starts sucking the yogurt off her fingers. She repeated this over and over for 10 minutes!!! She even tried to use a spoon!

 

I attached some video of us capturing her pure awesomeness! I know it's not "pretty" eating and especially with her being older, but none of that matters, what matters is that she's TRYING!! :)

 

 

 

Tonight is just wanted we needed -- progression and encouragement!! We are still beaming!



Under_Construction

It seems like its been a long while since I've last blogged (I'm on withdrawals people!). This is in part because during the last week or so, we inherited a dog, my sisters come from Virginia to visit (YAHOO!!!) and I've been consumed by a book called "Choosing to SEE."

I will have lots more to say on all three of these things very soon.

For now, since I only have literally five minutes, I want to tell you about a little something I had special ordered and recently received.

There is a site on Facebook called "Under_Construction Survival Bracelets" that you can order one-of-kind support bracelets, watches, keychains, dog tags and so much more. Normally I don't advertise for people, places, things (well, maybe occasionally) but this lady is married to a military man and they are currently stationed in Azores, Portugal. She has a wide variety of items to choose from to make fun, creative combinations. Also, as an added bonus, all her items are very well priced in my opinion.

Here is what I ordered:

What you see above is a dog tag bracelet that says "Mother to a CP Warrior." Without a doubt I'm a proud, proud mama and Jocelyn is the bravest warrior I've ever had the privilege of meeting and caring for. The cord colors I chose were green to represent cerebral palsy and silver for brain injuries/disabled children. There are many different types of bracelet designs/styles you can choose from. I went with the heart-style bracelet because it seemed the most fitting seeing how Jocelyn is "my heart." On the back side of the dog tag has her birthdate and a metal "hope" closure.

I think part of the reason that I love having things like this is because not only do I get to proudly support Jocelyn, but when people ask about the bracelet, it gives me an opportunity to share and teach them about cerebral palsy. It has become no surprise to me at how much the general public doesn't understand or know about cerebral palsy. I suppose in all honesty neither would I if it wasn't for having my own angel with this diagnosis. I believe it is a lack of knowledge which causes people to innocently make comments or ask unknowingly hurtful questions. I decided that if I do something like this or even make business cards with cerebral palsy information on it to hand out to the inquisitive staring eyes, that people react much differently.

 

I love the bracelet because it was very well done, but mostly because of its beautiful meaning!

 



Disgustingly Poo-tastic!

To quickly educate you...

When you have cerebral palsy you typically have hypotonic (weak) or hypertonic (tight) muscles. Jocelyn has a mixture (aren't we lucky? Insert a large amount of sarcasm HERE!). Anyways, Jocelyn has low muscle tone/control of her trunk which means its difficult for her to utilize those abdominal and back muscles normally. This also means that the muscles are weakened on the inside of her body (aka her bowels).

Many people with cerebral palsy have to take some kind of supplement to help them have a bowel movement. Even though Jocelyn gets plenty of free water and lots of fiber in her blenderized diet, she still requires medications such as Miralax or Naturals Calm. We prefer the Naturals Calm because well, its more natural and its not a laxative like the Miralax. Yes, we want her to be able to poo, but we also want her to learn some bowel training so that battle later on might not be so severe.

Anyhue, so there you have it. Jocelyn has trouble with her poo factory. Sometimes we all do, don't deny it, its part of life.

So the point of this little blurb tonight is to let you know that I must REALLY love our daughter! Once in a while she requires an enema like Pedi-lax. I try my best to stay on top of things to prevent having to use these because I don't want her to be dependent on them, but they work fast and I.MEAN.FAST!!!

Tonight wasn't my first rodeo and I know Jocelyn doesn't like getting them. I wouldn't want a piece of plastic rammed up my butt either and then for someone to squirt water in there. Too graphic? Sorry, but this is some true reality folks. Well, this evening, Jocelyn got me back.

Not only did poo-filled Pedi-lax shoot back at me hitting my clothes and face (it was minuscules from my eyes and I'm not completely sure my mouth was closed), but then...THEN...once she was "unplugged" I instantly was covered in a warm waterfall of backed-up poo. How did this happen you ask? Well, after giving the medicine, I often put Jocelyn in a crouching type of position to help her and provide resistance on her tummy so she has something to push her abdominal muscles against since they are weak. This time was oh so special because well, she decided to thank me in her own sweet way. Whatever visual you are now getting, you are more than likely spot on!

Thank you for letting me share this with you so you can be just as grossed out as I was...and still am...you're welcome!

Questioning Without Thought

Over the last few weeks I was asked two questions that keep getting played over and over in my head, and today, those questions have been on replay.

Question #1
"How are you going to make sure Jocelyn is part of your life and not your total life?"

Question #2
"How does Jocelyn fit into you and your husband's life?"

I'm not sure what your reaction to these questions would be, and to be honest, I don't recall how I responded either. These two questions were asked by two different people in totally different settings, but yet I think the questions are quite similar in nature.

When I was asked these questions I remember thinking "hmmm, thats a weird question to ask" and then blew it off. I can't help but wonder if Jocelyn didn't have so many special needs, would these even be questions a person would ask me? I have to say, I think not!

For all you  parents out there, even those with children grown and gone, have you ever been asked something like this? I don't understand why people think they can treat Jocelyn, and us as a family, so differently just because Jocelyn has cerebral palsy and developmental delays.

Why would someone even ask how Jocelyn would fit into our lives? She's our child and "fits" into our lives just like any other parent/child relationship. Furthermore, I don't know of any parent that doesn't make their child(ren) their life. Don't get me wrong, I personally know of some people that can wash their hands clean of their children and appear like they never had them in the first place, but true loving, caring parents are all about their kids. I think when you become a parent, its a natural calling to give your best for your child.

From the wonderful mothers I know, we all go without so our kids can have, we eat late or our food is cold because we are busy attending to our kids and family, we go without sleep endlessly sometimes because when a child is in the early stages they need a bottle, or when they get older its because they can't sleep, are crying or are sick. We've all done it, and in some form of another, we are all still doing it. Its called love and sacrifice!!! I don't think a parent ever stops "giving" to their child. I think the way a parent gives and cares for their child just changes over time, but it never stops. So why is it that just because my daughter isn't progressing as quickly and is staying in certain developmental stages longer, makes things worse and like I'm not doing a good job of "balancing life." For that matter, why is it anyone's business if my husband and I want our life to be all about our daughter and us as a family? Since when is caring about your family a bad thing? If we want to live and breath for Jocelyn and we are HAPPY with that, why does anyone care? I just don't understand how we couldn't make our lives about Jocelyn. Justin and I both believe children are a parents legacy and not something you take lightly.

Justin made a comment a while back that has been embedded into my heart and mind. With this comment, his perception on life and us as a family, has only made me fall that much more in love with him. What he said was "I love being around you and Jocelyn. I could only hope that I can spend my entire life with you both. If I get to spend my days with Boogie loving on her, hearing her laugh and enjoying one another? Then that is all I ever need and I could think of a million 'worse' things in this life than getting to take care of our daughter all my life." Yes, THAT is the kind of MAN I have for a husband. A man that sees it as a privilege to care for his daughter all his life if for some reason she would prove to need that kind of care.

Maybe those two questions that were asked, were asked out of concern or love, but I just find it hard to believe that a person would think it is okay to ask questions like these. I have never looked at a parent and thought such things and therefore, I have to believe its because our daughter has special needs. So what, she has "special needs" oooOOOOooooOOO, that isn't what defines her as a person, or us as a family. Yes, Jocelyn's motor issues, development issues and sometimes plain 'ol health issues come with there own set of rules and more often than not, these things do end up setting us apart from other families. However, the fundamentals of being parents is the exact same, but we just do things a little different.

Do I get exhausted? Yes. Do I wish things were different? Hell Yes! Do I get sad, or angry and think things are unfair? Most definitely. But I think every person, whether you're a parent or not, experiences those same feelings and frustrations about life in general. No matter if my feelings are in a positive or negative state, because "feelings" can change at a drop of a hat, I will not apologize for how we choose to live our life as a family. I feel no need to justify how Jocelyn "fits" into our family or how well we are balancing our life from another persons perspective. I don't make it my business to tell people how to live, and I don't appreciate others that think they have the authority to dictate how we live ours.

3-D with Texture

We had another visit with TARC this morning (that's the Shawnee County Infant Child Development) and it went very well. Our coach, Sarah, who is a physical therapist, also brought along a girl named Melissa who is a special education teacher. With only first meeting Jocelyn and to have a limited amount of time this morning, we made a lot of plans for hopeful progress. Let me be the first to say that it is very difficult to have age appropriate toys for a child when vision, motor and communication is a problem. I did learn some new things I can try with her and that's all I ever want - guidance, direction and ideas.

Since Jocelyn decided it would be fun to get up before 3am and stay awake, she was getting pretty tired towards the end of the visit. Once the girls left, I started on a little project that I organized last week. Since I'm always having to factor vision and motor into everything we do, I decided I would get lightweight wooden letters from the store and cover them with textured, colorful material. With the letters being 3-D, Jocelyn will be able to feel the letters, and with them being fun textures and colors, she will be able to see the letters. In my mind I'm thinking okay, she will be able to feel the letters, see the letters, hear the letters when I say them and maybe...just maaaaaaaaaaaybe...this will help her with learning the alphabet. That's three modes of learning right there so I'm being hopeful.

I haven't bought all the letters of the alphabet yet because I wanted to make sure my idea would work, but below are six letters that I sprayed with glue, covered with the textured material and trimmed with an exacto knife.

It's hard to tell from the picture, but each letter has a different texture. Some are smooth (like the snake skin), others are bumpy (like the zebra & cow print or the letter "A"...and they are all 3 different types of "bumpy"), rough & shiny (like the letter "E") or fuzzy (like the letter "F").

Once I have all the letters completed, I'm going to put a small piece of velcro to the back of each one so they can be attached to a felt covered board. By doing this, we can easily spell words or just work on the letters and the alphabet in general. One idea that the teacher gave me today in regards to the letters, was that I could put paper over them and have Jocelyn use a marker and shade over the letter. That would not only give her another way to learn the letters, but also a cool texture underneath, or at least that would be the idea.

Anyways, like I said, after the girls left and I laid Jocelyn down for a much needed nap, I started making the letters. I have only finished these six and it took longer than I thought it would. I like fast easy projects, and just for the six letters, it took me 20 minutes. Ouch! Time is precious for all of us isn't it? Here's to praying the letters help Jocelyn learn in a fun, creative way.

Lighted Cocoon

One of the swings that we received from the Kansas Deaf/Blind Fund for Jocelyn, is a Joki Swing. There are literally hundreds of different types of therapy swings, but we used this particular one during an OT session and Jocie seemed to really enjoy it, and since we could use the funding, we decided to go ahead and get one.

The purpose for this swing (other than it being a swing and what kiddo doesn't like a swing?) is to produce relaxation, promote security and for us, to provide an enclosed area to assist Jocelyn visually, to enhance vestibular stimulation and so that her toys can't "get away from her."

When you look at the swing in pictures, what you can't see, is that there is a large fluffy, removable cushion that sits in the bottom of the swing. Having a removable seat is necessary for any child in my opinion because I've never met a mess-free kiddo. The only thing that I don't really like about the swing, is that there is no seatbelt or a way to partially seal the opening to keep a child from falling out. I suppose that would defeat the purpose though.

Anyways, I got the idea the other day to try and do something different with this "cocoon" type swing that would be more visually exciting. The thoughts of how I would flip over backwards a million times for a lighted therapy room continued to go through my mind (they are WAY too expensive...like thousands of dollars...so that will never ever happen). So hmmmm, what to do? There is always something you can come up with to resemble something else you got your eye on right? Or at least in an attempt to get the same result?

I mean, look how cool a room like this would be for any kid!!

So today, I strung up Jocelyn's Joki swing from the hooks we put in the ceiling and got out some fun different types of toys that squeaked, that are rubbery, fuzzy, etc to put inside. Before I put her in the swing, I cut a tiny slit towards the top of the swing and threaded through some little baby christmas lights. I had some unused ones packed away, both plain and colored, and thought "hey, this will work great!" Once I got them threaded through, I clipped them around the opening of the swing so she wouldn't get tangled in them. I closed the blinds, turned off the lights and played a Zen CD for some auditory stim too.

Here she is being all curious-like!

Its hard to see the lights and this was before I got them all clipped around the opening of the swing but you get the idea. It really did make the inside of the swing glow in a fun way!

After she was all snug inside and her toys within reach, I gently gave her a push, left the room and snuck in a quick shower. Not too sure what she thought about everything, but I think it was successful nevertheless.

PS - As a side note, this swing has a weight-limit of 175lbs so uhm, just throwing that out there for all you "big kids" that wouldn't mind having a swing like this too! And take it from me, its cozy! :) :)