The Hard Parts Highlight The Good

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Yesterday afternoon, our family went to the University of Michigan Women’s basketball game at the Crisler Center. Elizabeth received season tickets from attending one of their basketball camps, and as our family had a free Sunday afternoon, we decided to all go together.

Knowing Wil can have a challenging time in large places with loud noises, I packed his noise-cancelling headphones and explained to him where we were going. He’s been to Crisler Arena before, but it has been some time. Just the night before this basketball game, our family was at Elizabeth’s soccer game at WideWorld in Ann Arbor. It certainly is no Crisler Center, but it is large and noisy and Wil did remarkably well. Even my friends who know Wil and his aversion to loud noises, commented on how content he was. This gave me some hopes that he may be outgrowing his aversion to loud noises.

Regardless, I packed his noise-cancelling headphones and we talked about cheering on the team. He picked out a Michigan shirt his sister had given him, and packed up a few toys and happily got in the car.

When we arrived, Wil did just fine in the lobby. We stopped at the fountain and he asked for a few pennies to toss and make a wish. We looked around for a bit, then we all decided to file into the arena to pick our seats. As Matt, Katherine, Elizabeth, Wil and I all began walking into the arena amongst the crowds of people, Wil stopped and asked for his noise-cancelling headphones. I stopped with him to put them on, then looked up to find no sign of Matt and the girls. Wil and I walked further in to find them, then the band started to play and Wil immediately sat down on the spot, hands over his headphones. People walked around us and I put my arms under his armpits to lift him up. We walked back out into the lobby area and I texted Matt to see where he and the girls were. Matt said stay where we were and they would come out to find us. When they did, we all filed back into the arena.

Again, as soon as we entered he sat down on the ground unmoving. Right where Wil sat in the aisle, was an area for handicapped seating. There were folding chairs leaning up against the metal railing and Matt suggested finding someone who worked there to see if we could set them up and sit right here. I looked around and saw a woman with a badge just outside the arena in the lobby. I told Matt I was going to take Wil with me and ask her. With all the people around, he must not have heard me but at the time I didn’t know that and Wil and I made our way over to the woman. She didn’t speak English well and thought I wanted a light saber they were handing out and started to walk off and get one. “No, no, I would like to sit in the handicapped area with my son and family.” I pointed toward the folding chairs leaning against the railing. “Would that be ok?” She nodded, and we walked over to the chairs. Wil again sat down on the floor when we got back into the arena. The woman kindly asked how many chairs and I replied that we needed five. Once she set them up, she left and I again put both arms under Wil’s armpits and tried to lift him to a chair. He was getting very upset and would not move. A man and his 2 girls came and sat on 3 of the set up chairs! I was so upset, but I was struggling to get Wil off the ground and knew if I left him for even one second to go over and address the man that Wil would be gone amongst the sea of people instantly. I only got Wil up when I promised him we’d go back to the lobby.

Once in the lobby I again texted Matt. He came over and I said not so nicely, “Don’t leave me alone again!” He apologized, and said he didn’t realize I saw someone who worked there and he was trying to find someone himself. “Hey,” he said calmly, “let’s just go to another handicapped area.” So off we went, found another area that wasn’t being used, and set up the chairs ourselves. We got Wil settled in a chair, which was a struggle, and I asked Matt to get him a drink from the concessions or stay with him and I would. I knew that would calm him down. Matt said he would go, and as soon as he came back with the drink, Wil was happy to receive the distraction. I put my arm around Wil and he leaned into me and I could feel him relax.

I felt for the girls, as they wanted to sit down and watch the game, but we were back and forth, in and out of the arena, trying to find a solution for Wil. But, still they understand. As soon as we sat down Elizabeth offered for Wil to sit in her lap. He declined, and she said if he changes his mind, she is right there for him.

The game started, Wil had his drink, and we all began to cheer on the team, except for Katherine, who is a Michigan State fan, as am I. But, the Women’s UM coach and much of her staff workout where I work, and they are amazing people. So I cheer for them. A young man selling snow cones was walking around and I told Katherine I would buy her a green snow cone. That would be her rebellion. She smiled and agreed. I gave her a wink.

A few rows in front of us, some of Wil’s friends from school spied us, one of which is the daughter of Wil’s former teacher. They all came up to see Wil, and during one of the breaks they all danced together to the music. The loud noises that bothered Wil so much earlier, he was now dancing to with his friends. Wil’s friend, Sarah, sat down next to Wil for the last half of the game and shared her french fries with him. Now that is a true friend 🙂

There were plenty of witnesses as I tried to lift Wil from the ground in our earlier trial to find a seat. Much later in the game, when everyone was having a good time, and I was sitting next to Wil and his friend Sarah munching on their french fries, my mind wandered to what those witnesses thought. Not in a judgmental way, but in a curious way. I wonder, does this raise any type of awareness in their minds? A new compassion? Or do they feel sorry for Wil. Or even for me? Or maybe they have a child, a sister, an aunt, a friend with Down syndrome and they are like, Oh, I know right where you are!

I share these stories because it is hard. I’m not here to say it’s not. I figure a lot of this out as I go. I make mistakes, sometimes I hit the jackpot, and mostly I learn each time, and we move forward from there. A lot of it is unpredictable. Some days are WideWorld Soccer days where it’s all content and good and the stars line up. Some days are Crisler Arena days where it’s a struggle just to take a seat. As Elizabeth is fond of saying, we have good days, bad days, in-between days and Wil days. It’s just part of life.

But I surely don’t ever want anyone to feel sorry for Wil, or even for myself. The hard parts have a way of highlighting the good. It makes the green on the snow cone meaningful to see the smile on Katherine’s face after the trial it was just to sit down. I feel the power of the patience extended, to be witness to Elizabeth ask Wil to sit on her lap. I feel the joy of the friends who come up to greet Wil and cheer him up by having him dance to the music that moments before was so bothering him. I know the value of communication between Matt and myself. I feel the gentle compassion of a friend who sits next to Wil, knowing he would feel much more comfortable with her there, and shares her french fries.

Non-Holiday Magic

The Christmas tree made it’s way out a few days ago. Pine needles dried out and scattered across the floor as the tree made it’s way through the living room to the back door. The kids and I had fun sweeping and vacuuming the little twigs and zillions of needles on a freezing, cold day indoors thanks to the music requests we called out to Alexa on our new Echo Dot, compliments of Santa. The decorations were then all tucked away for next year, the last of the gift returns and exchanges boxed up and sent back to Santa’s station which is ironically the same place Amazon Prime resides. Elizabeth chose to unplug the outdoor lights but they will stay on their perches just a little longer until this cold front passes and gives way to double digit temps.
The kids looked at the space where the Christmas tree resided in our living room and gave a sigh at the emptiness the tree has left, while I gave a sigh of relief that we have made it through. The kids remind me of the holiday’s magic, and deep-down what it is meant to be. The holiday’s deep base is love for our fellow man both friend and foe, of joy, of light-heartedness. Yet when the tree is gone, as an adult, I feel the light-heartedness in that empty space. To have our “normal” lives back. In part, that relief is because the busyness of the holidays is over, and I have space to step-back and really appreciate all that we have to love, to feel grateful for. I truly embrace the little pieces in life that are not wrapped up in bows. Personally, I require those quiet times to reflect, to absorb, to feel the gratitude for all that I have. During the holidays, it is such an overwhelming time for me as a mother. Each year, I try to prepare, to anticipate, to be on top of it just a little more than the year I was before. I do get better, but when it comes down to it, it’s just a freaking busy time. I have to admit, when the tree is down, I breathe a deep sigh that part is over. We made it through.
I don’t like to “make it through” things. I feel life is too short for that. I don’t live for the weekend, I live for every day. And that is the other part of why I breathe a sigh of relief at the empty space the tree has left. I adore our every day lives. I have such gratitude for them. They are not perfect, but are filled with so many special pieces that light me up. Wil never ever gets tired of watching his warm breath on a cold day. He always stops me, “Mom look! My breath!” That is magic to me. Elizabeth has a newfound love for Pinterest and she made a mess of the basement making us all sugar scrubs. I love that mess in the basement. It makes me smile every time I see it because it is filled with her creativity. Katherine is my sweet and quiet soul. It thrills me to see her sitting down with her sketchpad, designing another cat or wolf from her box of colored pencils. “Mom, have you seen my white colored pencil? I need it for just this one part. Look at this cat’s eye I made. Isn’t it cool?” These are the parts of life I thrive on. They are little but oh, so big. They are the light parts of life that carry me through the heavy times.
When my kids stand and sigh at the empty space the tree left, I am happy that they know and feel the magic the holidays bring. We all need some magic in our lives. Though I do not hold the same magic in my heart they do, that I used to hold as a child their age, I still believe in magic as an adult. When I look at the empty space the tree has left, I feel the magic of our every day lives. The magic in my son’s breath, in my daughter’s sweet sugar scrubs and in the glint of a carefully colored cat’s eye. That empty space is not empty to me at all, but a symbol of the space to step back, and reflect and absorb all that I do have that lights up my every day life. It’s quite magical, indeed.

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How I find Realism in Positivism

I was told this journey with Wil would get more challenging as he gets older, and it is in a way. But, I’m here to say it’s ok. What is life without challenges? Every time I’ve had a challenge, I’ve reached out and looked for answers. That is how I’ve discovered the speaker Tony Robbins and how he says to get excited when you hit a challenge because that means a transformation is happening. Reaching out is how I have found the most extraordinary people. I like to focus on the positive, it’s my survival mechanism. But somehow, that is looked on as being unrealistic. However, if I complained about all that is wrong, that is somehow deemed more realistic. Well, I don’t really know what the “right” way or the “wrong” way to look at something is. And I truly don’t care. I just know how I do best in this life, how I cope and make it through, and that’s to look on the bright side.

Wil is getting bigger, and stronger and more willful. He plopped down on the grocery store floor the other day and I had a hard time lifting him up. I shared this with one of the coaches I work with and he said, “Well, sounds like you need to get in here for more strength training!” That is what the bright side does. It gives you solutions and a sense of humor during the rough spots! I need friends around me who understand this when things get tough. Not friends that commiserate with me, but friends that understand. Friends that just “get it.” We laugh about the challenges together. Not because they are easy, but because we are in this together. And, dang there is so much good that comes from these challenges. Challenges truly are our positive transformations in life. I have met the most spectacular people on this journey that I would likely not have met otherwise. People that do not wallow, but rise to the occasion. Not because they are trying to, it’s just who they decide to be in life. Yesterday, for example, Wil had a playdate with his friend, Lila.

Wil has his limits, heck we all do. His limits tend to come quicker than his typical peers and there is not always the ability to rationalize with him during these times. This makes play dates with friends challenging for Wil, as he will seemingly hit a limit “all of a sudden” and act out or just shut down. When this happens, he does not respond to rationalization or discussion. What he needs is space and time to feel back in control of his situation. This can be challenging for an adult to understand let alone a fellow 10-year-old. The tendency is to coddle, and that is not helpful. He does not need coddling (which tends to border on patronizing). Coddling spoils Wil, and also undermines him as an individual. Being patient is compassionate and understanding of an individual’s (special needs or not) circumstances. When Wil had his moments, Lila would be patient with him and also switch around the game they were playing to re-engage him. I can not express enough the gratitude I have for friends like this, and what I have learned through these experiences.

I suppose I could complain about Wil not having many play dates because people just don’t understand him. I suppose I could complain that it’s so hard as he is getting bigger and challenging to rationalize with. Instead, I will pump more iron to lift my beautiful son as long as he needs lifting, and I will find friends that love and support us. And, you better believe I am eternally thankful for that fact. Without these challenges I would not know that patience that I do. Without these challenges I would not know the extraordinary people that I do. And, my friends at the gym would not tease me about how ripped my arms are 😉

Ahhh, this life is a good one. That’s the way I choose to look at it.

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