Do you remember that old song, Color My World, sung by Chicago? I’ve always LOVED that song! The meaning of those lyrics takes on a different hue when I think of our life with Aaron, and how he most definitely puts his own color on everything that we do.
For instance, on Sunday after church I took Aaron with me to our local Dillon’s. The grocery store is one of Aaron’s very favorite places! Every aisle is full of discovery to him. And since those discoveries involve his taste buds, he is especially eager to go along if offered the opportunity.
Sunday was a chilly day, but not a super cold day. However, Aaron decided that it was super cold, no matter what I said. So he walked outside to the van with his toboggan perched goofily on his head and wearing his thick winter gloves. I could have insisted that he take them off, but after suggesting such, he still wanted to wear his arctic garb and so I just let it go.
We went in the store, and as I headed to the pharmacy, Aaron veered off to explore the candy and snack aisle. No surprise there! When I veered up the same aisle to join him later, I had to laugh at the sight of him standing there examining the selection of peanuts.
He did not think it at all unusual to still be wearing his hat and his gloves. Nor did he think it at all unusual to talk loudly when he saw me coming toward him.
“Mom!!” he bellowed. “I’m looking at the peanuts!!”
And with that update, he proceeded to bend over to examine the jar that he thought he wanted.
And then he had to stretch his arm out to retrieve the perfect jar.
“See, MOM?!” he continued to bellow. “These are lightly salted! Is that good?”
I assured him that this jar was a great choice, and off we went to the self check-out…where he proceeded to talk to the attendant there about his lightly salted peanuts, in his commanding voice and his even more commanding presence…hat and gloves still included.
Sometimes it’s easy to be embarrassed by Aaron. He doesn’t need the funny hat and gloves to be noticed, trust me! So on this day, as he was even more noticed than usual, I just smiled and tried to see Aaron through fresh eyes…to relish how unusual he is…and to enjoy the moment.
The colors of that moment could have been red from my red face, and maybe my face was slightly red some of the time. But that’s OK. A little red doesn’t hurt me one bit!
Another aspect of my colorful life with Aaron has been the joy of getting to know other moms of special needs children and adults. The special bond we share is a rare treasure. It’s very encouraging to walk the same path with others, though none of us would wish our circumstances on them. But here we are, together on this journey, and our shared experiences make us all stronger.
One of those friends, Joyce, has a particularly rough path as she mothers two adult sons with very significant special needs. I truly am in awe of what she must handle on a “normal” day, much less on the kind of days she has had lately. One of her sons had his wisdom teeth removed. Then sickness hit the family, including Joyce and both her special sons. Intestinal…respiratory…fevers…seizures…many, many sleepless nights.
Her world is most certainly colored right now with the colors of poop and puke and puffy eyes, to be honest. So on Sunday afternoon, I called her and I asked if she might want to escape for a bit…go somewhere and catch a breath of fresh air. Change the colors a bit.
“Yes!” she said. And a short time later, when I pulled into her driveway, she strode out to my van with a big smile on her face. I was amazed, though knowing Joyce, I shouldn’t have been.
“Look at your smile!” I told her as she climbed in.
“Well, I know what I want to do!” she happily declared.
I was expecting her to name a restaurant…or a park…or maybe the mall.
“I would like to go to Dollar Tree,” she continued, “and get five vases. Then I want to go buy some tulips and take them up to Oxford Villa.”
And again, this woman amazed me. Oxford Villa is a senior assisted living center where her mother used to live. Joyce wanted to take some vases of flowers there for some of the residents who might not have anyone who loves them and brings them flowers.
Joyce, I thought, needed some color in her life. But instead, she wanted to GIVE some color to others! I was so touched by her unselfishness! So impacted by yet another lesson taught to me by this dear friend!
Instead of sipping a coke or coffee while eating a piece of dessert somewhere, I watched Joyce buy pretty colored vases and then examine the beautiful colors of tulips at another store. We realized that Sunday was not the best day to deliver the flowers, though, so that job will be completed another day. I hope I can help make that delivery!
Sometimes the best way to mix up our colors in this all-too-demanding life of parenting special needs children…or any other part of life that is draining you…is to look beyond yourself and see the needs of others. To reach out and help carry their burden while taking your eyes off your own for awhile.
There was joy for me in watching goofy looking Aaron find just the right jar of peanuts.
There was joy for me in watching Joyce’s delight in finding just the right colorful vases for some unknown, needy seniors.
Looking beyond ourselves causes us to see so many stunning colors that otherwise would have remained hidden.
It’s so worth the effort, even with red cheeks or through tired eyes!
Thank you, Joyce, for your wonderful and colorful friendship!
My writing about life with Aaron has taken a back seat lately. Actually, more like the back car on a very long train. Traveling over Thanksgiving and then returning to the mad rush of Christmas preparations have certainly been major factors. But there’s more to it than that.
I feel overshadowed. Living under a dark cloud of Aaron issues. Increased seizures…..medicine decisions……doctor visits. But even heavier than those concerns are the disruptions caused by his behaviors, which honestly have at times been far from nice.
Autism……family therapist…..psychiatrist……investigating alternative medical helps…….phone calls……meetings. It can get overwhelming sometimes. Keeping our cool can also be next to impossible, sometimes as impossible as understanding what makes Aaron tick. But we must understand that Aaron operates with a very unique mindset, without most of the filters that others have, and that he is constantly bombarded with sounds and ideas and stimuli that you and I never have to handle. His day group is a perfect breeding ground for noises and irritants and unusual people that can aggravate him quickly. We rarely see the behaviors at home that they see there. It can get messy.
Today I saw the side of Aaron that I wish he showed every day. It’s there…..just sometimes not seen as vividly as I saw today. Yeah, he got mad at a game this morning before we left for his dentist appointment. But he and I had a good discussion about it as we drove to the dentist’s office, where he also relished discussing his angry experience with the office staff, and with anyone else who had ears. He has no shame…..really.
As we left the dentist’s office, he gladly grabbed a cookie that was offered to him by the staff. And Tootsie Rolls that were in a bowl. Did he ever take Tootsie Rolls! I had no idea.
He ate one or two in the car on the way to Pizza Hut for lunch. The Pizza Hut buffet, heaven on earth for Aaron. All You Can Eat…..anything…..is heaven on earth to Aaron.
As we left Pizza Hut, paying for our All You Can Eat buffet……where Aaron really didn’t get to eat all he could eat because Mom stopped him way too soon……
Anyway, as we left and were paying at the register, Aaron pulled out yet another Tootsie Roll from his pocket. “Here,” he said to the smiling lady behind the counter. She was smiling because Aaron had tried to hide from me while I was in the bathroom. He was standing near the exit doors, peeking around the edge of the wall, grinning from ear to ear and then laughing loudly when I saw him. All of this in full sight of a banquet room full of people who were supposed to be listening to a speaker, but who were instead looking at Aaron and me with grins on their faces. Story of my life.
So Aaron pulled out the Tootsie Roll, handing it to the now laughing employee, and said, “Here. Because I liked the food today.”
When does he never like the food today?
But she was so happy to get his Tootsie Roll! She took it and thanked him, telling him that she loved Tootsie Rolls. Aaron was super pleased at her reaction.
“Look!!” he loudly said. “See how many I got at the dentist?!”
Oh dear. He pulled out a whole fist full of Tootsie Rolls. All I could think about was the fact that the ladies in the dentist’s office probably saw him take that stash while my back was turned to Aaron. When will I learn to never turn my back on Aaron when there are cookies or Tootsie Rolls involved?!
I gave him the “Don’t Be a Tootsie Roll Pig” lecture on our way to TJ Maxx, while he unwrapped Tootsie Rolls and enjoyed his free dessert. He offered me one and I accepted, feeling like a hypocrite. I stopped the lecture. Shouldn’t talk with my mouth full.
We walked into TJ Maxx, where I told him that I was looking for a gift for Nora. Nora is my little elderly friend that I take out once a week. She was our neighbor for 15 years before moving to assisted living. Aaron knows Nora. Sometimes he’s been not so nice to her, but other times he’s tolerable. Today he surprised me.
“Mom!! I want to get Nora a Christmas gift!” he exclaimed. “Here!! I want to get her……this!!” And he grabbed the first thing he spied, a Christmas candle holder that I knew Nora wouldn’t need or want.
Aaron’s desire to get Nora a gift just made me very happy, so I told him that we would look for something. We were browsing in the perfume section when I heard Aaron talking to someone.
“Here!” he was saying. I looked over to see him offering the employee manning the dressing room……you guessed it……a Tootsie Roll!!
This young lady looked a little uncomfortable as big Aaron held a Tootsie Roll out to her. At first she declined his offer, but then for some reason she said yes. She looked at me with a smile and at Aaron with a smile as she accepted the Tootsie Roll. And Aaron laughed with delight as he bent over and rubbed his hands together, oblivious to shoppers who were looking and this new friend whose mind was full of questions, I’m sure.
It was really very, very sweet. Sometimes in these moments it’s tempting for me to be too embarrassed to enjoy what just happened. Today, though, I really relished what Aaron was doing. I loved it!! I loved how happy it made him to share with strangers. And how happy these strangers were to have received such a spontaneous little gift from unusual Aaron.
Aaron had not forgotten that he wanted to buy a gift for Nora. We looked here and we looked there, and finally I saw a perfect box of chocolates.
“YES!!” Aaron said when I showed him the box. “Let’s get that!”
Later, at supper, Aaron had a thought.
“Mom? Can Nora eat that chocolate?”
I told him she could…..that she loves chocolates.
“But does she have fake teeth?!”
I told him she does not have fake teeth as I tried not to laugh.
“Good!” he answered. “I thought she might have fake teeth and couldn’t eat it.”
Aaron wants to give the gift of chocolates to Nora, in person. I am quite sure that he will ask her if she has fake teeth. She still hasn’t forgotten how he once said that she was old.
See what I mean? No filters…..no shame.
But Aaron has a big heart.
Here. Have another Tootsie Roll.
I need to give the dentist a bag of Tootsie Rolls at my next visit.
I pulled up in front of Aaron’s day group today, waiting for him to come outside and wondering as I always do in what mood I would find him. He wasn’t very happy to go this morning. Mondays are often difficult for Aaron, like they are for many who must return to work or school. Problem is, Aaron isn’t always able to filter his frustrations, so he may be angry and rude as he expresses his Monday morning blues. But he did go this morning, carrying his bag as he got out of the van…….his bag holding two bottles of water from the house, two sausage biscuits and two boxes of Hot Tamales from Quik Trip, and two cucumbers from our garden. The water and the food was for Aaron. The cucumbers were for whomever he decided to give them to today.
Aaron’s language of love toward others is definitely sharing. I have to watch him or he might try to sneak things out of the house that I don’t want him to share. Or he might bring a smile, as he did a couple weeks ago, when he put a few okra from our garden into his pocket…..and gave several of the staff at his day group AN okra. One okra. I’ve wondered if they think me a bit stingy.
Anyway, I sat in front of Paradigm today trying to prepare myself for whatever form of Aaron would soon be climbing in the van beside me. Happy Aaron? Sad Aaron? Tired Aaron? Angry Aaron? It’s so much like still having a kindergartner in school, going to pick them up and waiting for their stories of the day, and seeing what frame of mind they are in. Except that all the clients at Paradigm are adults, not young children. My Aaron is nearly 32 years old and weighs 225 pounds! He is grown up, but sometimes still his issues are not.
He walked out today with Barb, his very loving staff, holding Piper the resident therapy dog. Along with Aaron and Barb walked one of Aaron’s friends who often comes to the van with Aaron to see if I have brought our big Jackson. I could tell that Aaron looked like he had been crying at some point, and I was right. As the van door opened, Aaron’s mouth also opened as he told me that he had gotten mad at J for telling him to be quiet so that another client could sleep…..and Aaron thought that J was being bossy…..and Aaron didn’t like a hand motion that he said J made (nothing bad – Aaron just really doesn’t like other’s hand motions)…..and so Aaron hit J in the back…..really hard.
Oh dear. Children’s issues but in adult bodies. Barb was kind and supportive as Aaron declared that he did not want to come to Paradigm tomorrow, telling him that she hoped he would come, but not pushing the issue. I said a little but not much, knowing it’s best to let the dust settle first. More soft words from Barb and then she mentioned that he gave his two cucumbers away…..and his little friend standing behind Barb brightened, opened her purse, and pulled out one of the large cucumbers. Aaron brightened, too, and my heart softened for this man/boy who has so many conflicted emotions in any given day, today included. The moment suddenly turned sweet and funny, his little friend happily holding up her cucumber with a big smile on her face. These special adults can touch me so deeply if I just pause to soak it all in.
Reality hit again as Aaron and I drove away. He told me once more that he didn’t want to go back tomorrow. I was seeing a long evening ahead of anger and sadness, with Gary getting hit with it as soon as he unknowingly walked in the door. So I calmly talked to Aaron for probably the zillionth time about not hitting people, about how that holds him down in life, and how someday he might get hurt.
He turned on the CD of Zac Brown. “Don’t talk, Mom,” he instructed. “Let’s just listen.”
This suited me fine. We hit the three lane and rode in silence in rush hour traffic. Finally, he reached over and turned off Zac Brown.
“Mom?” he asked. “Can we go to Dillon’s and let me get a sorry card?”
What?! Aaron’s mood had dramatically changed. As he has in the past, he wanted to once again get a “sorry card” for someone he had hurt. But this change had happened quickly. He was sincere and quiet as we talked about it. I told him that we had cards at home he could use, and he was satisfied with that.
“And can I bring Barb an okra?” he continued. I suggested a green pepper instead, and he was excited at that idea.
“Mom?” he asked again. “I’d like to bring S a stuffed animal. That’s why I wanted to bring her my spider.” But I reminded him that his cute stuffed spider was a special gift from Bruce and Glenda, from Hawaii, and he shouldn’t give that away. I told him we would look for something else to give S…..his very special friend who is wheelchair bound, all bent over, and the girl with whom Aaron loves to share his food and his conversation.
I can’t explain the positive change in Aaron’s mood, but I sure have been praying lately about his hitting and his anger at times. Praying, too, as Gary and I get so tired some days. So I may not be able to explain Aaron’s happiness tonight, but I can say thank-you to God for allowing it.
I ended up finding an ancient little “sorry card” that I had saved in my ancient container of cards……two “sorry cards,” in fact……so Aaron chose the one he wanted to give J. Later, he saw the Burger King coupons from yesterday’s paper that he had cut out. He asked if he could give one to J, so we chose one to cut out and include with the “sorry card.”
Then I showed him one of the green peppers from our garden that he could give to Barb, and it met his approval.
Finding something for S was a little more difficult, but I remembered a very soft pillow stuffed with tiny microbeads, a pillow that Aaron never uses. He set it aside in his room, ready to take to S tomorrow.
I was happy that I had started supper early because Aaron wanted me to play the Frog in the Pond game on the Atari system that Gary hooked up to Aaron’s computer. We laughed and laughed and laughed at me trying to get the frog to catch the bugs.
Aaron offered to set the table for supper. He fed Jackson a piece of asparagus stalk. He didn’t dump bad news on Gary when he came home from work. He told Gary all about our Atari game and all about his sharing plans for tomorrow, but barely was mention made of his rough spot today and why he needed to give J a “sorry card.” We watched Wheel of Fortune, and we laughed ourselves silly at the Nexium commercial with the man who was made into a burrito.
I pray that tomorrow morning, when Aaron wakes up and is tired, that he doesn’t change his mind about all that he has planned for tomorrow. I pray that he is excited about all the things he plans to take to give away, especially the “sorry card.” That’s the most important of all.
I’m grateful for this happy evening, and I know that it is one to which I can direct Aaron as an example of how to handle life’s rough patches. I can honestly tell Aaron that he was a wonderful example to ME of how to overcome anger and frustration.
Sharing touches a loving chord in Aaron’s soul. It always has. I need to work with that more, and get creative.
I can see a trip to Dollar Tree in our future. We need to restock Aaron’s “give away” items, or I may be missing some dishes…..towels…..jewelry……
In the last blog I wrote about Aaron, I talked about how much it means to us when others treat him with kindness. Simple Kindnesses Even the smallest kindness shown to Aaron is just huge to us, and to him.
On the flip side of kindnesses being shown to Aaron is the issue of Aaron showing kindness to others. Sometimes we’re happily surprised at how Aaron will be kind to others. Sometimes we’re sadly embarrassed at his total lack of kindness. We never know what a day will hold. We never know what an hour will hold. We actually never know from minute to minute what Aaron will display toward others.
Aaron is pretty self-centered, which is common for those with Asperger’s. Empathy doesn’t come naturally to him most of the time. For instance, if I’m crying it makes Aaron either angry or scared. He doesn’t ask what’s wrong or ask me if I’m OK. Instead, he might make fun of me or get very agitated. I know that about him, so I try to never let him see me cry. I can’t invent that sort of empathy in Aaron, try as I might.
Therefore, when Aaron shows that he cares about someone, those of us who live and work with Aaron are delighted. I wrote a few months ago about how I saw Aaron walking to Quik Trip with his day group. Pictures of Kindness He purposely waited to be the last in line so that he could walk with his friend, S., who is in a wheelchair. It melted my heart to see that about him.
We make it a purpose to help Aaron see practical ways that he can be kind. For instance, when we eat out I make sure that Aaron always says thank-you to our server. The same goes for thanking those who help us at Wal-Mart or the grocery store, Great Clips, or anywhere else we go where we receive assistance from others. I don’t think Aaron would do that by himself if we didn’t remind him over and over to do so. Verbal kindness is very important to all of us, and we want Aaron to be verbally kind to everyone. Trust me, sometimes his verbage is anything but that, yet we have to keep reminding and reminding.
A couple weeks ago, when I went to pick Aaron up at his day group at the end of the day, one of his staff came out to tell me that it was a rough day with Aaron. I still feel like the parent of a disobedient, still learning kindergartner on those days. Yet we need and want to know what’s going on so that we can help deal with it and address it at home. A couple days later, this same staff headed for my car as I waited for Aaron. Aaron ran behind her, all smiles, and opened the passenger door with gusto as I rolled down my window to talk to Melinda. I was dreading what I would hear, but right away I was all smiles like Aaron as I listened to Melinda tell me that Aaron was awesome and wonderful and fabulous, and all other sorts of affirming adjectives. I think I was happier than Aaron was to hear those words!
And there on Melinda’s shirt, like a name tag, was a note that she pointed out to me…….a note that Aaron had written. It said, “Melinda is cool.” She was wearing it with pride, all the while confirming to Aaron that sweet behaviors bring sweet rewards of praise and smiles. Aaron had written a note to another staff that day as well, on her calendar. It was just extra sweet and funny.
At his day group, Aaron also loves to give things away. We’ve really had to work with him to quit giving away his money. He’ll give others candy, gum, fruit or sliced veggies from home, whole cucumbers or squash from our garden that he has sometimes hidden in his shorts pockets…….you name it, Aaron has probably tried to give it away at one time or another. And while that’s nice, there are times we have to draw the line and say no.
There are times that helping Aaron to be kind doesn’t necessarily work into my schedule, but I have to remind myself that he needs help with carrying out some of the things he really wants to do. For instance, a couple weeks ago he wanted me to bring Jackson with us when I dropped Aaron off in the morning at Paradigm. I wasn’t really in the mood to do that, but finally I agreed and off we went, Jackson sitting on the seat in the back of the van looking all around and Aaron happily talking in the front seat.
Once at Paradigm, I attached Jackson’s leash to his collar and we went inside. The other clients love Jackson, so he was received with lots of petting and hugs. But the one person that Aaron wanted the most to see Jackson was his friend S., who is wheelchair bound and bent over with her disease.
“Mom!! Come over here and let S. see Jackson!” Aaron loudly told me from across the room.
So I took Jackson over to S., and I was so happy to realize that big old Jackson was just the perfect height for S. to just reach over and pet his head. She doesn’t move well, but Jackson was able to stand there and let her pet him easily. Aaron stood there rubbing his hands together the way he does when he’s very happy, his face just one big smile.
And the smile on her face was worth every single extra minute it took me to bring Jackson with us that morning. I left there later with a huge smile on my face that matched hers……and Aaron’s.
Aaron has also shown kindness to S. by giving her food. He has told me that sometimes he has to put it in her mouth, and that it seems weird to him to do that. But then we talk about her limitations and I remind him that he is being a true friend to her.
He is also sad when he sees her sitting alone. I’m not there to see how much time he spends with her, but he has said that he does talk to her sometimes when she’s alone. It makes Aaron sad to see her lonely, and it makes us very glad in that case to see Aaron sad.
One other thing we recently did was to make cookies for Aaron to take to his friends. It was a week ago on Sunday afternoon that we made the cookies after I suggested it to Aaron the day before. He was very happy about this idea. I had him help measure and pour and scoop so that the cookies were genuinely from his hand.
He enjoyed taking them the next day and sharing them, giving the whole bag with the remaining cookies to one of the guys when I picked him up that day.
However, we got an incident report concerning the cookies, too. I think Aaron wasn’t so nice sometimes with sharing his cookies. This is so typical. I can’t let it stop us from doing this nice gesture that others enjoy, but it is discouraging sometimes to see Aaron take something good and make it an ugly issue. We’ll talk about it during our next baking session, and I’ll drop Aaron off that morning hoping and praying that he’ll be nice to everyone and share equally.
It’s all a lesson to me on how we can’t give up on Aaron. We have to keep reminding……and training……and instructing…….and teaching…..
And putting ourselves out there in order to help Aaron become the young man we want him to be, at least most of the time. We can’t expect it all of the time, but we can’t quit trying.
Parenting never quits for any of us with children, but with our Aaron the parenting REALLY never stops. Other special needs parents can certainly agree to that.
May as well make cookies, right? And be sure to eat some while they’re warm!