Seeing is Believing

Believe it or not, I've finally gotten around to posting some videos of Wade in his wheelchair.  I have a bad habit of putting off things I think will take a lot of time.  But really, how long does it take to upload some videos to YouTube and then post here???  So, without further ado, here we go!

This first clip is of Wade at therapy, the day he received his chair.  He was a little apprehensive, but he hadn't sat in one in 6 months.  Yes my friends, that's how long it took for insurance to process his chair!!!



This next clip is of Wade showing off his new skills to our friends.  We are so lucky to have such a wide street that is not at all busy for him to practice.  Because, it seems like A LOT of practicing is in our future!



This last clip is a little long, so feel free to do some fast forwarding!  I would edit it a bit, but since it's taken me so long to even get these posted, I think I'll save that for another day!



Wade got his chair the last week of August.  When we first tried it in the clinic, we had the head sensors set to just turn right and go forward.  Once we got the chair home, being the anxious parents that we are, we decided to give Wade the ability to go left, right, and forward.  We quickly learned that with these options, Wade's favorite thing to do was to spin in circles!  Also, even though we live on a wide street, Wade always seemed to find the curb!  Thank goodness for the remote stop that we hold onto for emergency situations.  After talking to our wonderful therapists, we realized that all the directions were just too overwhelming to start out with.  So now, the only option he has is forward.  Once he learns to stop and go on demand, we'll add right and left back.

It's now been about 2 months, and he seems to be getting the hang of it.  We take it to school everyday, so he has a lot of opportunity to use it.  I can't wait until he is a lot more proficient with his chair.  It's going to give him so much freedom!

An Open Letter to All Professionals

Taken from www.thecrackandthelight.com
Thank you for putting into words what so many of us feel!

An Open Letter to All Professionals

Hello?


New teacher, or therapist, or doctor? Is that you?


Oh hello…


I just wanted to chat with you a second. To caution you. Or warn you.


Please, tread carefully.


You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?


The slightly broken, definitely bruised one?


Yeah, that’s my heart.


My slightly-broken, definitely-bruised heart.


Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…


You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….


You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…


But regardless of what you see, what you think, or what you believe, this is what you should know:


I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.


Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

A Disorganized Mess

As you can tell by the dates on these blogs, I'm really not doing very well at recording events. A lot has happened in the past month. I have a running dialog in my head of what I want to write about, but those thoughts never seem to make it to this blog. Quite frankly, my life is just a disorganized mess!

However, I do have hope!!! About two weeks ago I went to the doctor and was prescribed medicine for ADD. My world inside my head has completely changed! I have so much more focus, clarity and motivation. I can see the light at the end of the tunnel instead of completely shutting down because the tunnel seems too dark. I've taken one nap in the past two weeks! It's amazing because sleep is my favored mode of escape and denial.

Unfortunately, medicine is not the cure all. The medicine has given me clarity and a sense of positivity, but now I have to teach myself how to gain control and organize my life. Just because I'm feeling better doesn't mean I automatically know how to do this. I am so used to living in a state a chaos, that this is new territory for me. I LOVE the thought of being organized, but I just can't manage to get there. Hopefully I'm beginning to walk down a new path that will finally bring a sense of calm to our household. I recently purchased two books: Unclutter Your Life in One Week and ADD Friendly Ways to Organize Your Life.

So, my goal for this weekend is to start reading the books. And with any luck, I'll get at least one post up about Wade's new wheelchair!

School Begins!

I have been dreading the first day of school all summer. Actually, I think I've been dreading this day since Wade was born, knowing that with a disability he would be starting school at the young age of 3. But, my fears were totally in vain, and I even had to eat some words on the second day of school! When we met in May for Wade's ARD/IEP, I decided that he would only attend PPCD 3 out of 5 days. Yes, I was totally keeping my son in a bubble because of MY fears! On Tuesday morning I had to surrender my fears and tell Wade's teacher that he will be attending school four days instead of three. (She had been trying to convince me to send him all five days, and she won!) The only reason he's not going that fifth day is because he has OT/PT on Thursday mornings and speech Thursday afternoons. She was thrilled and even said, "See Wade. I told you she'd change her mind!"

So, needless to say, Wade is completely happy at school. I think it's a wonderful environment, and I feel completely comfortable leaving him there. I was amazed on Monday when we walked by the principal and she said, "Hi Wade." We have not seen this lady since May. I think he is going to make tremendous strides!

First Day of School picture


Riding to school




Saying hi to the teacher


Playing with blocks


Checking out his new friends

All in all, this has been a very positive experience. Wade was worn out on Monday and took a three hour nap. I had to wake him to go to speech. Tuesday he did well also. This morning, I think the busy week is starting to catch up to him. He was very cranky and cried when we got into the classroom. I anticipate a long nap this afternoon!

A Little of This, and A Little of That

Besides me getting used to being a stay at home mom, things have been pretty uneventful around here. Which is a good thing! So, just a few highlights from the past couple of weeks.

A few weeks ago, Jocalyn from Kendall's Hope Blog, sent me request to become a fan of 3E Love on Facebook. I immediately fell in love with the wheelchair heart symbol Stevie is promoting on his page to: "Embrace diversity. Educate your community. Empower each other. Love life." I told Curtis that if I were to ever get a tattoo, that's what I'd get. Little did I know that I would soon be at the tattoo parlor getting my very first tattoo at age 36! That was on 8/8/10. The next Sunday, 8/15/10, Curtis went back and got his tattoo. We got them in honor of Wade getting his very first wheelchair. It's amazing how powerful a symbol can be. In fact, Curtis said it best in a FB post to Stevie: "It's amazing how a symbol can help you embrace something. Our son has CP and is getting a wheelchair, we purchased his first van this week. It was a hard pill to swallow but on the other hand very exciting. Soon he will have freedom beyond his mind. This symbol has really helped me to embrace things and I was proud to get the tattoo to celebrate the beginning of a new chapter for us... It's helped me cope with things and instead of dreading the challenges I embrace them now I am forever thankful. And honored to have this symbol." So, thank you to Jocalyn for sharing this page, and thank you to Stevie and his sister for spreading the love!

My tattoo

Curtis' tattoo

Last Saturday, after much research and discussion, we finally purchased our new van. At one point, it was between a Chrysler, Honda, and Toyota. The Chrysler had the most options, the Honda had the best third row seating, and the Toyota drove the best. However, the Honda was a close second as far as driving the best. The Chrysler was just too heavy. We decided to go with the Honda, then when we got to the van shop, I decided to look into the Toyota again. They didn't have one on the lot, but could get one from Mesquite. It fit the bill and was a little cheaper than the Honda, so we decided to go with it! I'm absolutely thrilled with our decision, and I have absolutely no buyer's remorse--which is really good for me! Even though we don't have the wheelchair yet, this van has already made things so much easier! I can stand in the van and easily move from the front to the back when needed. I don't have many pictures yet, but when we get the wheelchair next Thursday, I'll get some shots.

Wade rolling into the van soon after we bought it!


In honor of Wade starting PPCD, his aunt Jordan sent him a new back pack and a few things to go inside.
 



Included with the back pack was a supply box, pencil, box of crayons and first day of school note. Typical stuff. I texted her and questioned her about the action figures and fishing lure. Her response, "Jenny. Every kid takes toys in their back pack. And the fishing lure is for show and tell." Well of course! What was I thinking??? Wade is so lucky to have such an awesome aunt who loves him so much!

I still can't believe Wade is starting school on Monday!!! Tomorrow evening is "Meet the Teacher." Stay tuned for a full report about the first day!

Highlights From the Week

We had a pretty eventful week in the Jordan household. Last Monday we were honored to be invited to the Grapevine Elks Lodge. Wade's speech therapist at Cook Children's has worked so hard to get funding in order to purchase some iPads for the clinic. The Elks Lodge came through with flying colors, and now Wade and other kiddos have access to the iPad and the communication app, proloquo2go, during therapy. Wade's super speech therapist invited us to go with her and another therapist to the Elks Lodge to express our appreciation for their generosity. Wade was a huge inspiration for Sandra to work so hard to get the iPads. We are so thankful that we have such a wonderful group of therapists at Cook's. We expressed our interest in the iPad, and Sandra took it and ran! It's so helpful that she knows how the iPad works so that we can use ours at home and follow up in therapy. We're able to bounce ideas off of each other and figure out what works best for Wade.

Wade was able to tell the Elk members Monday night "thank you" with his iPad. I heard a woman across the room say, "He's using his head!" I am so thankful that Wade was/is able to show others how innovative people with disabilities can be. Since he can't use his hands well, he uses his favorite modality--his head and mouth!


On Wednesday night, Wade decided he needed to get up at about 2:00AM and stay up until about 4:30AM. Unfortunately, Thursday morning was therapy morning, so I had to wake him up and head off to therapy. Surprisingly, he did really well. Afterward, I couldn't handle the thought of going home and listening to his crankiness that I was sure was going to follow, so we opted to meet some friends at the Fort Worth Zoo. This was Wade's first trip to the zoo, and I think he really enjoyed himself. When we approached an animal he really seemed to like, he would start kicking his legs and smile. We were only there for a couple of hours, but I ended up getting a zoo membership so we can go back anytime.




Friday, we headed out to get Wade a big boy bed!!! I have been mulling it over in my mind for quite a few months, but we just kept putting it off for one reason or another. We opted for a daybed so that it is closed in on three sides. Then, I picked up a bed rail from Babies R Us to attach to the open side. I think it's going to work out really well. Curtis and I put it together Friday night, and the new mattress was delivered on Saturday. Saturday night when I took Wade into his room to show him, his eyes lit up and he grinned so big. When I laid him down on his back, he just giggled and giggled. I took that as a sign that he loved it.
A little bit later our neighbors came over to check it out. Wade's friend Mallie climbed up with him and they had a great time cuddling and laughing together.




On Sunday after church, the same neighbors came over for hamburgers and pool time. Wade and Mallie had a great time splashing around. Later on, after naps, Wade and I headed to their house. This is where I witnessed Wade learning how to play pretend! Mallie was serving us all "tea", and we all pretended to drink. When she held the cup up to Wade's mouth, he shook his head "no" and closed his mouth. We just kept talking about how we were drinking our pretend tea and how good it was. "Yum, yum," I would say. Before too long, Wade was opening his mouth and "drinking" from the cup. It was soooo cute! Of course I didn't have my camera!




All in all, it was a pretty fabulous week. But the real beauty in all of these events is the wonderful people we have in our lives. We are so truly blessed to be working with some of the best therapists around. They all encourage Wade and teach him to overcome his obstacles. And I am so truly thankful that I have friends that include us on outings and play dates. To be honest, sometimes it is difficult to see these kids a little younger than Wade playing and talking. But then I see the smile on his face and glimmer in his eyes and thank God that we have such a network of supportive friends. It makes my heart smile when I hear the other kiddos calling his name and see them get so excited when they see him. These children do not yet know about disabilities and discrimination. Their innocence is beautiful and gives me such hope for the future.

Mommy of the Year Award

Well, that's an award that I don't think will be hanging on my wall anytime soon. The past two days have been filled with high pitched screaming from Mr. Wade. It has left me with a constant headache and a lot of doubt about my parenting skills. I can't seem to get anything right these past two days. He tells me--in his way--he wants Yo Gabba Gabbba, but I don't pick the right one. Screaming. I start making food, but I can't do it quick enough. Screaming. I figure out he wants the iPad, but he doesn't like the game I put it on. Screaming. I tell him we're going to take a bath. Screaming. I take him out of the bath. Screaming. I can't win.

I realize he is communicating, but this isn't going to work. I actually pulled the time out card today when he was screaming over the iPad. After the timer went off, I gave him the iPad back, put it on a set of flashcards, and he calmly shook his head no. So I switched to something else. This is where I have the problem. The problem isn't the screaming. It's that I know he has other ways to communicate, but he chooses to scream to get his way. I'm at a total loss. I'm going crazy. Curtis is going crazy. And poor Wade is stuck in a body knowing exactly what he wants, but can't express it correctly. I just want to cry.