Sad to Surprised

Sometimes I have days (or for weeks it seems) where I'm in a funk. There are days where I just want things to change, progress ... be DIFFERENT ... so badly, that I can get discouraged at times. I know we all have those days, just in regards to different situations.

When you have the realization that you truly have a vast knowledge bank and are doing everything you possibly can in regards to therapy, teaching, offering opportunities, etc for your sweet kiddo and not really getting what you desire? Its disheartening. When you realize that you virtually have every gadget and resource for where you are at on your journey with your sweet special needs daughter and there is nothing more you can do but keep doing what you are doing? Its disheartening. 

No matter what you tell yourself, you still keep hoping and praying for that magical thing to come along to make things "click" or "come together" and it may or may not happen.

So even though Justin's birthday was yesterday and it was a time for fun and celebration, I found myself sad and having sort of a little pity-party. I have had many consecutive nights with interrupted sleep, and yesterday was a day full of crying, whining, vomit and poo that were seriously disgusting and makes you sometimes wonder if you will ever feel better about things. The reality is that just when I think we've got a grip on things, something happens, changes or new things come up and having that feeling of the "rug pulled out from under you" is not ever welcoming.

When I laid Jocelyn down for her nap yesterday, I had such a heavy heart. When she woke up, I placed her on the edge of her bed just to see if she could sit on the mattress which of course is a squishy, soft surface and much harder to sit on (or at least its hard for someone that has cerebral palsy and muscle weakness). To my surprise, Boogie sat on the edge of her bed for at least 15 minutes (but I'm sure it was much longer). This is what she looked like the entire time we sang songs and read a few books.

{Front View: Isn't she the CUTEST??!!! Look at that stinky little face! She looks pleased with herself and loving my singing apparently ... either that, or she's laughing in my face at my rockin' voice! Ha! She looks like she's actually standing I think.}

{Side View: Yep! Still as cute as can be but you can see her sitting better here! She's in a sleeper because we went swimming before lunch and with it being so cold yesterday, I kept her in it for naptime to warm up!}

Needless to say, seeing her this way turned my whole day around! What a gift!

Happy Birthday Hot Papa!!!

Today the Hubby's 32!!!

 

Happy Birthday Lover Boy!

 

I've always thought my fella had a mighty fine booty ... guess he's always had a cute butt!

{He is going to KILL ME for posting this!}

 

You were the cutest cowboy on the farm ...

 

An amazing fish-master ...

and a fierce wrestler!

 

But what I love most?
 

Is that I will get to celebrate many more of your birthdays to come!! Can you believe you've spent a 1/3 of your life with me already??? If you ask me, I'd say that makes you lucky ... oh wait, I'm the lucky one! ;)

Boogie and I took some pointers from a friends work and Pinterest to make a fun birthday candy poster for daddy today.

 

We have some friends that are going to help distract him this morning so it can be snuck into his office here in about an hour. I'm excited hahaha -- it doesn't take much for me to get giddity! :)

 

We even took a birthday morning picture -- it's pretty bad but oh well -- I share the good and the bad! Daddy actually already got a shower while Jocie and I still have crazy, curly bedhead hahaha!

{Boogie was NOT going to let me capture her 1st thing the morning! haha Oh well, maybe we'll snap a better one later today.}

We love you SO MUCH Justin -- Happy Birthday Honey!! I hope its half as spectacular as you are!!!

SPARKK

First ... what the heck does that stand for?

Special Parent & Respite Kare for Kids

 

SPARKK is a special program sponsored by the TARC Children's Services (ie the Infant Child Development) and the Shawnee County CDDO. This special program ... or actually its a respite care program to be exact ... functions because both TARC staff members and other volunteers, offer their time, talent and love to ensure a safe, fun place every other Friday night for children with disabilities or delays.

 

Those families that qualify (meaning the parents have a child with disabilities or delays) can utilize the SPARKK program once per month, from 5:30pm-9pm for only $5.00 per child. The icing on the cake for some families is that SPARKK also welcomes siblings which means the parents truly get a BREAK!

 

Of course prior to getting to use this program there is an application/enrollment process with lots of additional information provided so whoever cares for your child, knows them as well as they can prior having them under their watch.

 

During a kiddos stay, the staff offers fun activities, supper, access to an enclosed playground for kids of all abilities, lots of toys and many other types of support.

 

Why do I sound like I'm making a PSA? Its because for the very first time, this mama-bear utilized this program tonight!!!!!

 

Can we say -- way to take a huuuuuge step mama?!?!

 

Even though Justin and I could have actually went out to dinner BY OURSELVES for once, we didn't. Justin had to fly tonight so that was definitely not happening, and since he was not going to be around I originally had thought, "why bother taking her when its just gonna be me," and then immediately thought "well, why not?"

 

So tonight was our big night of separation! When I say first night of separation, I'm talking about this is the very first time that all three of us have been apart from each other!!! There have been maybe three occasions where the grandparents have watched Jocelyn for a few hours and we have went to a movie, but that's it. When Jocelyn went to preschool I didn't even leave, and here I was planning on dropping her off, providing some last minute directions, giving her some mama kisses and then walking.out.the.door!!!

 

I am proud to announce that I did just that --
I LEFT!!!

 

I have to say though, the staff made me feel so at ease with their knowledge, enthusiasm, energy and confidence that I felt GOOD about leaving her there -- you just can't buy that folks!

 

The plan was just to leave Jocelyn for 1-1.5 hours since it was her first time, and because I would need to feed her supper (with it being her first time, I didn't want the staff to feed her via g-tube right away).

 

So what did I do for my 1.5 hours of freedom?

 

I went to Barnes & Nobles for Starbucks and some book shopping -- ALONE!!!

{Yes, I really was this excited hahaha - My skinny peppermint mocha tasted amazing and I was happy to find Jocie a book I've been wanting for her! You would've thought I won the lottery by the looks of this face! :D}

When I got back to pick up Jocelyn, everyone was gushing over all the stuff they did, how Jocelyn loved the swings and toys on the playground, being read too, how much fun she had -- which was very obvious!

{She was sooooo wound up! Made it smile!}

I would be lair if I said I didn't have moments of brief panic or worry during the time Jocelyn was at SPARKK, and especially when I realized that I didn't put their phone number in my address book. When I was browsing the books it dawned on me that I didn't have their number and I thought "Oh my gosh, what if I need to tell them something?" But seriously, what would I honestly need to call them about in that short period of time? That's right -- NOTHING! Just being an anxious, protective mama, but who can blame me.

 

This is a program we will definitely be using again and maybe we will shoot for a full 2 hours next time? Who knows, daddy might even be able to enjoy time with me as well? I'm excited just thinking about it and thats a great feeling!! :)

 

I'm beyong grateful for the SPARKK program - such a blessing!!!

SPOOOKTACULAR!

Halloween is in FULL SWING!!!

I am loving all the Halloween pictures of peoples kids (even the "big kids") all over Facebook today. Everyone is so cute and seeing a flood of smiling faces always makes for a great day!

Today, Jocelyn and I got dressed in all black and attempted to make our faces look like cats -- well, mama was a cat and Jocelyn was my kitty. :)

I was even able to use some creativity to ensure Jocie had cat ears. Since Jocelyn doesn't like things to be on her head, I took some construction paper this morning and cut some ears, left a little flap and then snapped them on with barrettes!! Genius right?!

We had things to do this morning but first, we stopped at daddy's work to give him some love, drop off some yummy Halloween goodies and snap a pic.

Today was a spooktacular trick-or-treating event with the TARC peeps!!

Jocie even got a picture with her TARC coach -- she's more like family now though.

{Sarah is the prettiest -- Inside & Out! Oh, and that awesome blinking pumpkin necklace that she has around her neck? It apparently was no match for little miss grabby-grabbington. She pulled one of the pumpkins right off!}

Going to TARC's Halloween bash was the best first Halloween experience for Jocelyn that I could ever ask for. Several of the staff that were passing out candy had Big Mac Buttons which Jocelyn could push that would say "Trick-or-Treat" or "Thank You" which was wonderful since Jocelyn doesn't sign or verbally say these things. Its rewarding to have a "voice" and I thought the staff using these devices was extremely thoughtful of them.

Also, Jocelyn was allowed plenty of time to look, pick and grab whatever she wanted from each of the candy baskets. Its so nice when she's given the opportunity to do something by herself. Even though Jocelyn was a bit sleepy at first, towards the middle of our adventure, she was soaking up all the attention she was getting from everyone. People were raving about her cute costume, how "awesome" her wheelchair was (we used her "hi/low base" which made it easy to raise or lower her to whatever level the people were at today), and she was loving every minute of it. She thought the best staff costume was the lady wearing a huge Goofy hat and the lady with the big fluffy bunny ears. It was a good thing no one was behind us because that Goofy hat had us on lock down for a while! Jocelyn wanted to thoroughly explore Goofy's bright eyes, big black nose and the sweet lady behind the hat.

Half-way through our trick-or-treating we stopped at the TARC's playground and had ourselves a swinging break.

Today has been so much fun and I'm thankful that I'm able to experience everything with our sweet little girl. She is far sweeter than any candy could EVER be!!

We hope you all have a Bootastically fun-filled day with enough candy to rot your teeth!

Be Safe!

MEEEEEOW!!!

Halloween Fun

Lately I have absolutely no idea where the days and weeks are disappearing too. One minute its Monday, the next its the weekend, and then we're already starting another week. Apparently between working really hard to establish a true preschool curriculum for Jocelyn, still getting in a fair amount of her therapy, going to & from appointments, cleaning house, working out, cooking and all the other million things a mama and wifey does --- I've lost total track of time!! I sure do enjoy the moments like this though...

Can you believe tomorrow is the last day of October? ANNNNND...

IT'S HALLOWEEN!!!

We are going to be participating in the TARC's Halloween program tomorrow and Jocie's going as a cat. I know, kind of lame and especially since I wanted her to go as a lamb since her all time favorite book...and I'm talking about F.A.V.O.R.I.T.E book...is called God's Little Lamb. Thank you Nicole Zadina for sending Jocie this book so long ago even if it makes me bonkers sometimes.

So a cat babe Jocelyn will be --- hey, I just said time got away from me and we actually already have everything to make her look sort of like a cat. Besides, every kid needs a ghetto-looking costume at some point in their lives, and now sounds like a good time for Jocelyn! Ha!

My favorite ghetto costume from back in the day was when all five of us kids went as California Raisin Men. Nothing like black tights, stuffed trash bags, white gloves and some "I Heard It Through the Grapevine" tunes!! Oh Marvin Gaye how I love you!

{Wish I had a real picture of us!}

For a quick flashback to the 1980's, and because you might want a quick giggle and grove out session...

Click Here: "I Heard It Through the Grapevine"



Jocie going as a cat is simple and she still will be able to fit into her wheelchair if needed. We are going to do all black clothes, shoes and paint her face. I wanted to give her some kitty ears but the girl does not want anything on her head...ever! I must've scarred her for life back in the day when I put so many monstrous bows on her head. Well that, and the fact that she's had brain surgery three times --- that's enough for anyone to tell you to get the hell away from their head! :|

{Look at this chunky cutie!!! See, told ya I liked the big bows/flowers!
...just couldn't help myself!}

The last week or so we've done lots of Halloween type activities, some partly as preschool activities, that ranged from playing with pumpkin guts, to making sandpaper pumpkins, collage ghosts and glow ghosts, and different spider activities.

Below are a few pictures of our Halloween fun -- enjoy! :)

{Justin getting started -- I think LED lights inside the pumpkin works great!!}

{Poor girl, mama made her get E-Stim even while playing with pumpkin guts.
She was soooo totally grossed out at first, but apparently warmed up to them.}

{Glow Ghosts: milk jugs, marker & LED light -- J had a blast with these last night -- lots of giggles for sure!}
{Pacman Ghost: construction paper, cotton balls, streamers & foam for face -- She wasn't a fan of cotton}
{Sandpaper Pumpkin: Fine & coarse paper, paint & glue -- She was TICKED OFF but still painted}
(Spider Handprints: black paint & googly eyes -- this turned into a giggling splatter paint fight -- so fun!}

Fall/Halloween is such a fun time!!!

Already got some fun ideas for Jocelyn come winter and hopefully she will like at least a few of them! :P

Words Define Your Character

My passion in life dramatically shifted once we gave birth to our babygirl. Over the course of our daughter's 2 1/2 years, my passion has shifted yet again for fighting for the special needs she has acquired, for her to be given the opportunity to succeed, for her not to be viewed as a number or a diagnosis, for her to be seen and treated like any other beautiful child, to ensure she receives the best medical care possible, for her to attain the necessary therapies/equipment/devices to have a great quality of life, for her to always have a voice even if she cannot use her own, for her to learn what courage and perseverance is from her parents, for her to always be seen as a bright, intelligent, worthy, capable little girl and someday ... as a young woman.

 

There has been a lot of uproar over a tweet by Ann Coulter regarding the last presidential debate. The statement Ann Coulter made on October 22, 2012 was "I highly approve of Romney's decision to be kind and gentle to the retard."

 

Wait -- did you catch that? She, as a public figure (even if she wasn't one), regarded the president as a retard and even worse, used that word like a "retarded" person is something of shame or as a person that is beneath her!

 

No one should be shocked by this woman's incessantly nasty comments. Back in the 2008 presidential campaign, she directed derogatory remarks towards the presidential candidate John Edwards by commenting "turns out that you have to go into rehab if you use the word 'faggot'!" Apparently it was felt that she was insinuating that Edwards was a faggot which not only offend him but deeply insulted the Gay & Lesbian groups. Coulter seems to take pleasure in targeting political groups, specific religious affiliations such as the Jewish community, our military, obviously has no regard to the special needs community (which is A LOT of people by the way) and at times her targeting people seems to know no bounds.

 

Didn't I just write about bullying -- she is definitely a bully amongst other things. The fact that she takes great pleasure in her sharp tongue, is truly disgusting!

 

Simply reading about her past history of asinine comments proves that she has attempted, and continues to attempt, to attack every type of special interest group out there. I have to say, her past speaks for itself and she's not making any attempts to grow and develop as "Christian Woman" that she so proclaims. I hate it when people so loosely throw around the comment about "being a Christian" because trust me, her words and actions do not even remotely define a true Christian.

 

There is a large number of people who would be outraged by her statement on Monday and would want to see her slaughtered (not literally of course, but in terms of publicly taking her out), and then another group would argue, "She lives in America ... it’s called Freedom of Speech!" Yes, both sides are correct in their view points ... I suppose.

 

I of course feel like people who try to defend their idiotic, heartless comments by quoting "its freedom of speech" are cowards and like that somehow gives them authority to attack or hurt whomever. I'm more likely to view her as a shallow, vindictive woman merely seeking for attention to achieve fame. I suppose her approach is working because everyone is talking about her and here I am writing about her.

 

Perhaps Coulter's statement strikes a chord with me because fairly recently as I again was standing in a checkout line with my cart and Jocie at my side in her wheelchair, I had a lady tell me "I use to work with retarded kids like your daughter." For the sake of getting all fired up and ruining several hours of my day, I will not go into detail about how her careless assumption played out. What I will say is that yes, Jocie is not mobile and therefore requires a wheelchair for locomotion at this time; yes, she often doesn't make eye contact and looks up and around leading you to believe she might not know or understand what is going on around her; yes, she makes weird facial and body movements and sounds when she is excited but what all these things DO NOT MEAN -- is that she is even remotely retarded!! Anyone who would dare to think so is ignorant!!!

 

You see, this will be a great battle for us as parents when Jocelyn approaches public school age. It will be a challenge to test and prove cognitive skills to school officials who use testing approaches that require vision, fine & gross motor skills and verbal communication skills ... all of which Jocelyn has difficulty doing even though her receptive comprehension is more than intact!

 

I have digressed slightly ---

 

Even though I have spent time on discussing Coulter's disrespectful approach to the human race in general, I had to talk about her in order to express my admiration for how John Stephens responded to her remark.

 

Prior to this incident, I had no clue of this man named John Stephens. Mr. Stephens is a man with so much intelligence, grace and class that puts even the most disgusting woman to shame with his words of wisdom, truth and beauty. Below you can read his response to Coulter's statement. I would be so honor to call Mr. Stephens my friend and will try and learn from his humble response.

 

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow. So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

 

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

 

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarky sound bite to the next.

 

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

 

Because, Ms. Coulter, that is who we are – and much, much more.

 

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

 

I have to wonder if you considered other hateful words but recoiled from the backlash.

 

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

 

No one overcomes more than we do and still loves life so much.

 

Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

 

A friend you haven’t made yet,
John Franklin Stephens
Global Messenger
Special Olympics Virginia

Bullying

...apparently, it happens at ANY age!

Let me just say before I even begin telling this story/experience, that I respect my elders and I feel they deserve that respect even if they are not always agreed with. However, no matter the age, gender, religion, education or success level ... I WILL NOT TOLERATE A BULLY!

On Monday, Jocelyn and I had to run over to Lawrence to do a number of errands, which included going to the library to get books for her preschool curriculum. Of course we had to hit the restroom first and then headed towards the children's section. As we were walking into the children's section, I see a young girl (maybe pre-teen) being led into the library by a young man (maybe early 20's), and they too were headed for the children's section. It was immediately apparent to me as they were walking, that the young girl most likely had something that resembled Autism, but of course I was just taking a guess from first impression. Either way, nothing that I saw bothered me in the slightest ... just made an observation.

Jocelyn and I sat next to the computers to look up some books, and the young man and girl sat close to us in the comfy couch section. As we were doing our thing, we suddenly heard this bewildering yelp from the young girl which was immediately followed by the young man saying "we are in the library and we don't do that in here." He didn't correct her in a mean fashion, just made that statement. Instantly the girl did it again even louder and the guy said "if you keep doing that then we are going to leave ... you need to come near me and play." Again, I didn't see anything wrong with how he talked to her, his tone, his manner of correction/guidance and really, she didn't bother us with her "noise." I mean seriously, we were in the children's section and so what, because she has some uncontrollable condition she can't be in there? She wasn't being that "disruptive" and the people present were far and few between.

So anyhow, after the second little outburst (I guess you could call it that), an elderly woman (I would guess at least 70's) came over to the young man and asked "Is that girl with you?" Of course he replied "Yes" and the woman proceeded to ask where her mother was and so forth. At first I thought maybe she didn't like seeing a younger girl with a young man ... that could be a reasonable objection perhaps? The young man explained that he was her caregiver, the mother was at work and all the while he seemed really distraught. The woman pressed on with more questions in an extremely disapproving voice and the young man explained to her that the young girl did in fact have Autism, that it had been a bad day and sorry for the outburst.

I kept thinking, "What are you apologizing for? She's not bothering anyone and it was a simple little yell that lasted maybe a millisecond! Why are you even answering this lady's questions and why does she care so damn much?"

So the elderly lady continued to pester the young man and ask for the mother's number so she could inform her of how this young man provided care, asked what his name, who he worked for and so on. The guy was actually going through this phone to get the numbers for the lady to write down!! What?! It was obvious that the young man was getting really upset (and not like angry, we are talking more emotionally upset as in tearful), and actually looked more desperate for help than anything. He asked the elderly woman what she was so upset about and she said, "I think you could be doing a much better job with her than you are, and someone should know about it."

At that time I got the young man's attention and said "Hey, listen to me, you are doing an excellent job ... don't let some stranger get you upset." In the very next breath I told him he doesn't need to explain anything to anyone and definitely not give out personal information like the girls condition, names, phone numbers, etc. The elderly woman looked at me with this glare, like I really cared, so I glared right back at her square in the eyes because I'll be damned if she was going to intimidate me. As she glared at me I told her "Ma'am, I don't think you perhaps understand the situation ... she isn't bothering anyone." She then condescendingly said, "Oh no little lady, I understand perfectly. I was an educator for many years. Oh I understand." Of course you can probably imagine my reaction because like I said, I don't care who you are or what you've done, it doesn't give you the right to belittle or be aggressive towards someone over nothing.

It was more than apparent that the guy was trying to care for this young girl. And again, I know that some caregivers aren't the best, I've seen it myself in the clinical setting and when I worked for the state, but from what you could gather at that moment, he DID care and was trying his best. It's not an easy job caring for a person that has behaviors, physical disabilities and the list goes on and on. Its more taxing (yet can be supremely rewarding) than anyone could possibility imagine unless you've experienced it first hand!

I suppose the lady thought her comment would shut me up, but that wasn't happening. Apparently she didn't know I wasn't your run-of-the-mill stranger that was going to idly standby and not intervene. I'm telling you, her behavior was absurd!!! As the elderly woman pressed for more answers and demanded the names and numbers of everyone, I eventually told the lady it was none of her business and she needed to leave the young man alone. She still wasn't getting the message, so I proceeded to tell her that she was the one with the problem, that even with her "education" that she apparently knew nothing of Autism and that SHE was the one being rude and disruptive.

It was either because of the growing audience or my tone, but the library staff in the children's room came over to us to intervene and made the lady leave.

Shortly after that unexpected episode, Jocelyn and I checked out our books and were on our way to finish the rest of our errands. To my surprise, as we walk about the door, the old lady was outside WAITING FOR ME!!! Are you kidding??!!! As soon as she saw us, she got up and started to walk towards us and I immediately put up my hand, looked at her and said in my most authoritative voice "Look lady, don't even waste your breath ... I have NOTHING to say to you!!"

After I got Jocie and I into the van I sat there thinking, "What the hell just happened? Where do these people come from?" Just as I was starting to feel guilty for being so ugly to the woman, I thought of my own brother and how badly he was bullied throughout most his life.

You see, my brother (all my brothers in fact ... I'm the baby) is older than me, and I always thought he could take care of himself. A lot of times I would think to myself "I'm a girl and younger ... how would I get people to stop bullying him? Do I really want to get involved ... my life is hard enough!" But was it? Was it really in comparsion to his? Now, I don't think it was. When your in middle school and high school things seem tough for everyone. You are always criticized for what you do and don't do, or if you are "different," and sometimes you are just thankful to make it through another day. Often times I was viewed as the one with a "I don't give a damn attitude" and a lot of the time that was true, but not as often as people may have thought. Or people would say "you just do your own thing all the time" and again, that was often true. I had an out-of-town boyfriend, worked nearly full-time and basically wasn't all that involved in my class' high school drama. Later in life I had high school friends tell me they were "scared" of me and of course I had to laugh because I would think really?

When I think about my brother and everything he endured, my heart aches so badly. I would pass him in the hallways at school and I distinctively remember the look he would have in his eyes. That look like he wished someone would just reach out and give him a hi-five to let him know they liked him and that he existed. That look like hey, let me know that I matter ... that you're on "my side!" Shamely I would often ignore it. Who does that? Geez, now I'm going to make myself cry this morning! What you do and don't do can effect you for a lifetime!!!

I'm telling you here and now that I regret not being a stronger person then, and especially for someone that I love and care about. I'm sure I didn't stand up for him because I was a teenager myself and going through my own issues, but I know now that they weren't anything like what he experienced. He needed me, and others, and often times no one was there. Please know that then, even now when I get mad or frustrated at you, that I LOVE YOU brother ... very much! I'm sorry I wasn't there for you when you needed someone. You and Jocelyn have inspired me to stand up for people who can't. I will never allow someone to be bullied or hurt in my presence ... ever! I love you both!