Me? I’m strong!

Last weekend at our cousins wedding, Daniel had the opportunity to ride a horse. When I had arrived, I noticed the horses and the option to ride them, and my first thought was that Daniel would love it! But then, I started thinking, I’m not so sure… I could vaguely remember something having to do with Daniel and horses but nothing particular.

And I forgot about it.

Later in the evening, Daniel pointed out the horses and said he wanted to ride them. He did not say those particular words, he pointed at them and said “I like the horses, I like them so much.” So I asked if he wanted to ride them, and he said yes!

He eagerly approach the line, proudly signed his name on the release, and waited his turn. Our mother was standing there and mentioned to me on the side that he used to be terrified of horses. It started coming back to me. Our motherhood found a camp where they provided therapeutic riding, and Daniel was not interested (to say the least).

However, when it was Daniel’s turn, he didn’t miss a beat. He put on his helmet and approached the horse. He got on it with some assistance, and once he was on top he said “me, I am not scared! Me, I’m strong!”

Our nephew went with us and about halfway through the ride told Daniel how he could tell the horse he wanted to go faster (a nudge with his heel). Daniel said, “I like slow.”

The way he is giving us the thumbs up while he is getting ready to get on the bourse lets me know that he knows what we are thinking.

His statement “I like slow” told me that he knows what he likes.

His statements of “me?! I’m not scared” let me know that he remembered when he was, that he used to be.

Daniel uses the phrase “I’m strong” in contexts where “I’m brave” would make sense.

We think the phrase is “I’m brave” would be right, but maybe Daniel is the one who has it right. To say, “I’m strong” makes much more sense. His determination is stronger than his fear. He IS strong. Courage takes strength. Courage requires you to control your mind AND your body to do something different.

I was worried… that he would become scared and I would not know what to do, or be able to get him off the horse. I was worried 55 (the horse) would start running. He was strong. I’m so proud and if I say I’m inspired, it’s an understatement.

#danabouttown #bornthisway #unstoppable #strong #movethisworld

#proudsister

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Attitude of Gratitude

I was not sure what Daniel would think of the symphony (and to be honest I had not even looked to see what the theme of the evening was).

Daniel was immediately interested and into the living room dressed in a suite, with a vest, and a tie. His tie was not tied so we found a YouTube video. At the end, he glances to the screen and says, “thank you.” And I thought, who does that? Who thinks of that. Someone left a video on YouTube that we watched and it’s someone who will not hear the words yet that is the posture of Daniel’s heart. An attitude of gratitude.

He overwhelms me. In the best way. He is also so sophisticated.

He chooses sushi for dinner.

He holds every door.

He takes tremendous pride in not only offering my drink, but in paying for it.

He greets everyone and is never miffed when someone does not reciprocate.

He took in every moment of the symphony. His eyes were watching the orchestra, the dancers, the singers, but the didn’t stop there. He gazed at the interior of the building in such a way that I thought he might have passed out. He engaged with the music. He couldn’t still. He conducted with his hands from his seat and the energy and enthusiasm radiated off of him. His emotions were contagious.

After the symphony we returned to the same bar where we had a drink before dinner( the pricey but delicious gin drink and he the Agua Fresca (a mocktail).

He asked me before we walked in what I wanted this second time and displayed his cash to me saying “I pay. I buy it your drink.”

His shoulders swelled as we entered where he confidently approached the bar and ordered two Agua Fresca.

Now, did he need help articulating? Yes. Could he do it? Yes.

I give a shoutout to the bartender at Proof+Pantry in Dallas. He engaged with Daniel and I’m sure that it was that positive and affirming interaction that 1) made Daniel so excited to come back 2) gave him the confidence to approach and order drinks (and with unusual names at that).

We got in our car and the doors were not closed before he said “Sarah thank you for my date. Thank you for my night.”

On the way home my gas light when on and before a second passed he said “I do it.” His passion to give, love, care for, and serve comes from the inside. It comes from his heart. You can’t manufacture the instantaneous response of thankfulness or service.

He is a gentleman.

#brothersisternight #downsyndrlme #proof+pantry #symphony #dantheman #unstoppable #thesweetesthing #heartofgold #321 #bornthisway

“Call Me”

Daniel spent nearly two weeks in the hospital over Christmas. He was a week in intensive care followed by a week in “regular” hospital. I could write every detail because I know I’ll never forget but I want to focus on what happened that should give us all a goal. After being poked and prodded for over four hours one night as mutiple nurses tried to find a place to stick an IV, an anesthioloigist is called from the OR and finally does the magic. The room is a terribly tense and stressful place. No one wants to ever have to hold anyone down much less your brother/son while they are in pain. On his way out, the doctors and nurses distraught about the stressful situation Daniel says “call me, honey.”

I was blown away. In that situation I as a patient would be the last to try to lighten the load by making a joke. Who is able to bring so much light and joy to an otherwise stressful and painful situation? Selfless!

The best part of my day was good

I get in the car with one of the kids I tutor. He is nine and has down syndrome. I always want to know how his day was, but I had to learn how to ask those questions!

I asked him one day, “What was the best part of your day?” His response, “the best part of my day was good.”

I love that. I smile every time I think of it.

I have to look back and draw on some pointers I was given as a facilitator for a camp for incoming freshman on how to ask open-ended questions. It’s too easy to just ask questions that end in yes or no. Of course, if your child is not verbal, a yes or no may be a victory! and is to be celebrated, but even with a non-verbal child, you can draw pictures, use signs, etc. I think you will be overwhelmed, overjoyed, and amazed at the feeling you get from this simple communication as well as the joy and confidence you give your children by giving them the tools to communicate.

Now I’ll ask, “what made you happy” or “what made you sad?” with my brother Daniel I’ll ask “what was your favorite activity at school today?” or “what was the best part of your day?”

I’ve learned to be persistent because both of these boys as well as the other kids I work with will try to ignore the question, act like they don’t understand, etc., but once they know that I won’t take silence or “I am hungry, I need a snack…..can we get lemonade” for an answer, they will respond. THEN, I get a little glimpse into their day. I learn that my brother likes math games and his job at the dentist office even more than he likes lunch some days (this is a surprise).

Handwriting and Fine Motor with Ollie the Owl

I’ve discovered a fantastic app for handwriting! I was searching the app store to see if the creators of Handwriting Without Tears have an app. The only application that appeared was Ollie’s Handwriting and Phonics. I have LOVED using it with the kids that I work with who have Down Syndrome.

You can choose whether to focus on single upper case letters, single lower case letters, or words. The letter appears and a miniature owl moves in the direction that we are supposed to print. The child then is to mimic the owl to create the letter. I have the kids use their fingers. It takes some dexterity and concentration and I love it! If they try to “cheat,” nothing will appear, but if they use their fingers to pull the owl in the direction that was shown at the beginning, a line appears.

It is simple and straightforward, not overloading the senses!
Much easier to explain in person, but check it out!
It costs $3.99 and in my opinion is well worth it!
A plus is that the kids enjoy it!