Something to Share

I have been sharing stories about Daniel since his life began. Although he is nearing the age of 21, this boy will continue to be the center of my universe. He is inspiring and kind, funny and determined. His presence in my life has changed me in ways that I am just beginning to grasp. That is my main reason for deciding to take the next step in sharing our story with the world. Close friends and family are by now quite familiar with “Danielisms” and all the wonderful experiences this child has brought into my life. These people have offered constant encouragement through the years and I appreciate it more than I could ever say. It was with this encouragement that I began this blog as a jumping off point into the world of writing. Getting these memories and experiences out of my heart and on paper has become a goal for me during the next several months. Thus far, I have shared openly the many moments of laughter as well as times of difficulty. There are so many more stories to share. I am asking for your kind thoughts, good vibes and of course, your prayers as I lay this life we share on paper for everyone to see. It is my sincere hope that in doing this, Daniel’s story will touch the lives of readers around the world. His story has always been larger than life. I hope it will provide encouragement to parents, friends and family members who have the opportunity to bear witness to the life of a special needs child of their very own. I thank you all in advance to all that positive energy coming our way. We are blessed. I will continue to keep you all updated on my progress!

Bait and Switch

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Daniel has challenged me these past few weeks. He insists on smuggling toys out of the house every morning before school. He gets pretty creative I have to say, and at times I wonder where he is hiding this stuff because I do the dreaded pat down before heading out the door. At first, I was finding the stuff but now he knows my routine so he has definitely gotten smarter and revised his plans of attack. It looks like I’m gonna have to go all “Shawshank Redemption” on his little butt. In our scenario, Dan would be playing Morgan Freeman’s part. The mastermind if you will. (If you need a body hidden call Dan. He’s available for hire).

For those who have never seen this epic movie.. you’re dead to me and go rent it now. LOL, I imagine I need to somehow get inside Daniel’s mastermind head and see if I can crack his modus operandi. He has this obsession with gardening gloves. He wears them everywhere. I told him the other morning  that he needed to leave his gloves at home, because, let’s face it, how much gardening is getting done at school? He went into full on “Daniel Time” on me. I swear to God, a snail moves faster than he does when he goes into “Daniel Time”. It drives me insane! Well, after the pat down, then after the snail walk to the car was the dramatic walk into the school. I was feeling as though I had finally beaten him at his own game when I managed to get him to school without the gloves and without a toy! I was the victor enjoying that very rare moment when the odds were in my favor. Victory felt good. It felt real good.

Later that same day, Dan gets off the bus and walks through the door at approximately 2:30 pm. He then proceeds to strut his cocky self right by me… WITH the gardening gloves on! I looked him square in the eye and said, “Well played Morgan Freeman. Well played.” As God as my witness I will figure this out if it’s the last thing I do. But on another note, if I go missing I urge all of my police friends to look straight at Dan because that kid can apparently roll me into a ball and hide me under his hat. Yeah he’s that good. Just saying.

Welcoming the Dream Riders

A great event is taking place in Tellico Plains on August 18 to benefit Special Olympics. “The Dream Ride Experience” has currently raised more than $2,245,000 for Special Olympics programs in multiple states, with over 100% of the proceeds directly benefiting the charity. For more information on the 2014 Dream Ride Experience visit www.dreamride.org.

On Monday, August 18, Dream Riders will travel from Kennesaw, GA to Robbinsville, NC via the famed Cherohala Skyway. Before they leave Tellico Plains, the group will enjoy a good old fashioned cover dish luncheon from 12:00 to 1:30 sponsored by Charles Hall Museum & Department of Tourism, Tellico Plains, TN.  We hope to have Special Olympians present to share in the festivities because ultimately they are the reason for the ride. When we learned the dream riders would be coming through town our idea was to host a luncheon and a meet and greet with 2014 SQHS Prom King and Queen and hopefully several other Special Olympians from Monroe County.

The event will begin with what will hopefully be a huge welcome as the riders arrive followed by friendly conversation and sharing of information as well as photo and media opportunities at Charles Hall Museum and Monroe County Department of Tourism Visitor Center then culminating in a parade through town to the entry of Cherokee National Forest. Dan and Molly SQHS Prom Royalty 😊 will be our Grand Marshals for the parade. If you’d like to help us build fanfare, make signs, share a covered dish or assist with set up please let us know by commenting below. It’s a fantastic chance to share our Monroe County hospitality and raise funds and awareness for Special Olympics.

Using the “R” word

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This is a very sensitive subject around me. I have people around me all the time saying “that’s retarded” or “he/she is retarded.” I simply say, “Please don’t say that”.  Sometimes I just say their name and give them what I call a “mommy look” and they usually say, “Oh, I’m sorry or you know what I mean.” Well, I most certainly don’t know what they mean. I acknowledge their attempts to explain by responding with the same simple request, “Please don’t say it.” The “R” word has become a part of our speech patterns or slang more than I care to think.

When I hear someone say it, I wonder if they would say the word around someone like Dan or to Dan? Isn’t it like looking at an African American and calling them the “N” word, referring to an Asian with the “C” word or looking at someone who is gay and calling them the “F” word? I choose to not say these things and most certainly won’t label anyone but everyone knows what these labels mean.

When you make a reference to someone as “retarded” it offends me a great deal. My life is a constant worry about Daniel reaching life goals. I want him to have as normal a life as he can have. When society makes these words okay to say around their children and in turn those children think it’s okay and so on and so on, it is a shame. I would like for everyone to take a stand against the use of the word and not just around someone that you know has a relative with a handicap but in your everyday life. When you hear someone say it , correct them. Don’t laugh and pretend it didn’t happen. Be offended for me.. for Daniel. Love our special children and respect them for the challenges they meet everyday. They deserve it.

In closing I would like to everyone make a sign just like the one Daniel is holding. Post it on Facebook and tag me in it. Let’s take a stand together!

Finding Nemo

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It’s been several years since Daniel has been to the beach but thankfully, there’s Facebook. Lately, there’s been a huge amount of  vacation photos from friends and family and it got me thinking. I like to test theories with Dan, a lot. I decided to show him a couple of pics from my Facebook page to see if he remembered his travels to the beach.

On his first visit, the only way to get him in the water was to be carried in with the promise that we were “gonna try and find Nemo”. Again, don’t judge me because of a little white lie. Besides, we really did search for Nemo. We spent 90% of the trip looking for that silly fish. Pixar can kiss my gills for making such a catchy movie.  Although Daniel was scared of the waves and the noise they made when crashing in, he couldn’t get enough of the whole “search for Nemo”. Since that first trip so many years ago, he still says “Nemo” when he sees a picture of the ocean. That is amazing to me.

I recognize a kindred spirit in Nemo’s dad, Marlin. I know he just wanted to protect Nemo and in doing so, often underestimated his son’s ability to do things on his own. He didn’t want the “great big reef” to hurt his son. I feel the same about Dan. My biggest fear for him is the fact he can’t communicate to me if someone hurts him. I have to trust in him to do his magic. He just has a way of making people love him for him. I have to believe in his bravery and know that he can do things without me. He shows me all the time.

I’m sure Marlin never got over the fears he had for little Nemo just as I will never be able to subside my own fears for Daniel. But letting Dan go and letting him grow from all that life has in store is all I can do. Falling down is part of the many life lessons learned by all of us. Knowing that your family is there to dust you off.. well now, to me, it is the most important part. We are all here to learn and to grow and to trust the journey. At the end of Marlin’s search he thankfully found Nemo but he also discovered so much more.

What I love about Sundays

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Daniel went to church this morning with his favorite girl, Molly. The bond between them is growing and I love to see his excitement when he knows he is going to see her. Daniel and Molly have been spending more time together since they became Sequoyah High School’s 2014 Prom King and Queen. Each time Dan gets around her he is like any other teenage boy. He will stop at nothing to make her giggle, smile or to simply get her attention. I never thought I would get to see him have such a crush on a girl. I guess I underestimated the power of love and admiration young adults like Dan have for the special people in their lives.

As parents, we raise our kids to go off and leave us for college or the armed forces. Many of them grow up and get married eventually having a family of their own. That isn’t the case for Dan and me. I raise him to be as independent as he can be but in reality, he will always be childlike and live at home with me. Even writing this down or saying it out loud breaks my heart for him. I used to become very emotional when I would think about him never understanding what it’s like to fall in love but now I get to see him with sweet Molly and I know that isn’t the case.

He loves her for many reasons but I believe it’s a wonderful friendship that will stand the test of time and that my friends is love. I can’t describe what I feel today knowing that this isn’t something he is going to miss out on. He is living it every Sunday when it’s time to head to church with his favorite girl. I also get excited for Sundays because I get to hear him say, “Molly? Day? Mommy?” and then I get to say, “Yes baby, it’s Molly day.”  That fills my heart with such immeasurable joy 🙂

Super spectacular selfie Saturday

I was having trouble with what to blog about yesterday so I decided to think about it a while. Today, I got out Daniel’s iPad and began looking at his pictures. He seriously has almost 3000 pictures. Most pictures are of himself. I guess you could say he’s a selfie professional. The rest of the pictures feature things that are important to him. He loves to draw and color. Daniel displays his masterpieces all over his room which contains stacks and stacks of colored pictures. Among all of the drawings, he strategically places pictures of his friends and family. It’s like a gallery of his mind. Beautiful.

When I looked at the pictures on his iPad, I discovered pictures taken of every point in his room. I believe he just held the button as it continued snapping around the room. I looked at the pictures and was about to start deleting the blurry ones from the gallery when something wonderful happened. My finger scrolled over the pictures (by accident) and it was like I was watching a movie. Each picture flowed into the next. It was the neatest thing I’ve ever seen. Daniel knew exactly what he was doing by taking these pictures that meant absolutely no sense to me or anybody else.

Yet again, he makes me realize how much more I need to stop and really look at things to take in their beauty. Seeing Daniel’s world from his perspective, I understand the importance of ordinary things. Maybe we all need to take the time to focus on kids like Daniel. Maybe then we would see the many things they can bring into our lives like blurry portraits that can transform into beautiful pictures in motion. Imagine the things we’ve already missed in life because we were just too busy to slow down and see all the the beautiful things and wonderful blessings. 🙂

 

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Morning Rituals in Dan’s World

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I look forward to seeing Dan’s sweet smile every morning. He always wakes up in a good mood. This is not always true in my case. I require caffeine to match his natural level of happiness. Each morning I watch him get up, stumble to the restroom and stretch in the hallway. He says, “Oh good morning, Mommy.” He then proceeds to his room and turns on a movie, which here lately has been Sponge Bob Square Pants. Lord, help me, I hate that song and my skin crawls with each repetitive musical intro but Daniel is a very loyal fan. Some things never change.
He makes his bed, which is comprised of six layers including an old Toy Story comforter, a Monsters Inc. comforter, a Toy Story beach towel, a Monsters Inc. beach towel, a Sponge Bob fleece blanket and a Sponge Bob pillow. Do you see a pattern? In his world everybody has beach towels in their bedding. Who am I to argue? Maybe we should all try this due to the fact he sleeps like a ton of bricks and a freight train could plow through his room and he wouldn’t know the difference.
Mental Note: Place beach towels on my bed just to test the theory LOL.
With his bed in perfect order, Dan then asks for “colo” which is a Danielism for Pringles. I know..breakfast of champions. I call words like “colo” Danielisms because they are all invented by Dan. Please don’t judge this excellent parenting choice of monitored nourishment for my child.. they really are delicious 🙂
Dan also checks the trash daily. If it is full, he takes it out then places a new bag in the garbage can. Trust me he takes this job very seriously. I never have to ask he just has his own routine. I suppose he is like most children with downs in that he doesn’t like change at all. I’m not complaining, trust me. I’m proud that Dan does his chores without being asked. Okay, go ahead and be jealous 🙂
My question for the day is this:
How many people have children with the same kind of rituals? I want to hear all about it. Learning about how “normal” kids have their own unique rituals is just as fascinating as those of my “normal” Dan.

The Power Behind a Name

This being the first post on my blog, I was reluctant to dare and approach such a subject so deep but here goes:

Before I had Daniel or knew he had Down syndrome, I picked his name out just as many parents do. Little did I know his name would make me realize that maybe God picked it for me. I’ve noticed along the way that many children with Down syndrome have biblical names. Coincidence hmmm.. I don’t think so. I tested this theory earlier today on a Facebook page called Parents of Down Syndrome Children.
The simple post reads: I’m curious about something because I’ve noticed over the years that a lot of kids born with Down syndrome have biblical names. I would like to know if your child is in fact named after a biblical person. Was it picked before they were born? Also, does your child’s personal story relate to the biblical person at all? The response was overwhelming. Just today, I received over a hundred replies to my questions.
Back stories relating to naming each bundle of joy is much the same as my own. Daniel reminds me of the story Daniel in the lions den. One particular passage says, “My God sent his angel, and he shut the mouths of the lions. They have not hurt me, because I was found innocent in His sight. Nor have I ever done any wrong before you, O king.” (Daniel 6:22, NIV)
Just like Daniel in the den, my Daniel is brave in his everyday life. I believe the lions in our story reflect society and the kind of prefabricated mold they set in place for children like Dan. Daniel is brave because he busts through the walls of the cave and makes his own rules. He gains acceptance from his peers by simply being himself.
I believe the faith I have in my son is similar to Daniel’s faith in God and His power to close the mouths of roaring lions. I believe God had every intention of sending this amazing gift into my life. I also believe the best gifts are those you share. That is why I have decided to share my Daniel’s journey with all of you. This is my chronicle of having such an inspirational child. It is how I have chosen to begin sharing my gift with all of you. Being in a lion’s den might be something some of you are facing right now. Remember, if a boy with a disability who can’t put together a clear sentence can close the mouths of society then you surely can show the same kind of bravery and move mountains just as he does everyday.I look forward to sharing many past, present and future moments.