Just Dance!

In September we planned a spur-of-the-moment week-end away at Mohonk Mountain House in New Palz, New York. We were away with Marisa's friend and his family, enjoying a few days of fine dining, hiking, kayaking, boating and entertainment at the mountaintop old world resort. On Saturday evening, after dinner, we went to listen to a jazz band. Then later, we heard an inviting musical number which lead us down the main hall to one of the many lounges.

We walked in to the dimly lit room with nightclub ambiance. There were numerous tables and chairs around a shiny but empty dance floor. We noticed that all seats were taken, so we stood in the back of the room and listened to the band and singer. We weren't there more than 30 seconds when Marisa bounded on to the dance floor, dancing to the beat of the music. I wasn't sure if this was okay as Marisa glanced back at me to see if I was going to raise an objection. I thought, it is a dance floor after all and Marisa wasn't blocking the performers. I shrugged and smiled but gave her no signal that she was doing anything wrong. Marisa continued to dance! 

As I watched Marisa, I thought to myself, how nice to be so uninhibited! Then I looked at the performers all dressed in black. The lead singer was wearing touches of silver sequins and glitter. I glanced again at Marisa and realized that she too was wearing black with a sequined top that blended  well enough with the singer, that she could have passed for the band's hired dancer. It was odd that no one chose to dance, but at the same time, it was pleasing to watch Marisa enjoying the freedom to dance her heart out and be so unaffected by the audience around her.

After 15 minutes of listening to the music and watching Marisa dance, my friend excused herself as she left briefly for the ladies room. As if on cue, a woman on the sidelines got up from her chair and started to dance close to where she was seated, but just ever so slightly, because it had to feel weird to go all out onto the dance floor as Marisa had done. A few more minutes passed, and then a couple got off their chairs and came on to the dance floor too. Then another couple stood up to dance, and in a matter of minutes there were numerous people dancing as the band played on and Marisa continued to dance around the dance floor.

When my friend returned, she stopped short as she did a double take. She looked at me with astonished surprise, and we both laughed knowing who was responsible for the transformation in the room. Marisa had broken the ice! She had been dancing alone for 15 minutes before anyone else had decided to stand up and enjoy the dance floor. At the end of the the performance the band leader gratefully acknowledged and credited Marisa for creating a livelier audience who were enjoying the performance the way they had intended.

I thought about Marisa's autism and how it affects so much of what she does and who she is. Once again, as many times before, I focused on the positives in Marisa's personality. I knew that her lack of inhibition had it's advantages. How many of us hold back from doing something we would love to do, but don't, because we are afraid of how we will appear to others? Maybe we can all learn something from this example. Life is short! Do we really want to waste time thinking about what others will think? What do we have to lose by being spontaneous and enjoying the moment? Who cares what anyone else thinks? That's got to be what Marisa was thinking! She had nothing to lose and everything to gain by going with her feelings, because she's been taught that as long as it isn't interfering with someone else or being harmful in any way, it is okay.

I wish I could think that way too. I wish I had the ability to be spontaneous and grab the moment. Don't we all? But maybe this is just so much easier for Marisa, because spontaneity is just one of many gifts that she has for being on the spectrum. That night, as I watched her on the dance floor, I realized how happy I was that I played a part in nurturing and encouraging her ability to grab the moment.

The Dinner Date

When Marisa asked a friend if he would like to get together, he suggested going out for dinner. I shouldn't be too surprised by this, considering that I'm talking about young adults in their twenties. I did stop to give it some serious thought, though. It's quite normal for most young adults to aim for an evening get together, but for those of us with young adult children on the autism spectrum, it's a bit more complicated than just setting a date and going for dinner.

For example, many young adults on the spectrum do not drive. This means parents have to get their children to and from all activities, or there has to be some other form of transportation available which they are able to navigate independently. Then there's the concern about knowing the proper steps in acquiring a table at a restaurant, ordering dinner, knowing how to pay the bill and finally figure in the appropriate tip for the server. And lets not forget the difficulties many on the spectrum have regarding holding a conversation during the meal. So, when Marisa's friend suggested dinner, I suggested she ask him if his parents would like to join us as we all go out to dinner together. I felt it would be a good way to offer any needed supports.

Shortly after Marisa texted her friend, John, regarding the suggestion of a family dinner, I received a phone call from his mom. To respect the privacy of Marisa's friend, I have changed his name.

"John won't be happy having dinner in the same restaurant with us. Why don't we let them go to the restaurant of their choice, while we go to one close by?" she asked.

I have to admit, I definitely wasn't ready for this, but when John's mom assured me that her son ate out alone all the time, and was comfortable paying his bill with the ability to calculate a tip for the server, I felt it would be a good opportunity for Marisa to feel a bit more autonomous, though I realized that Marisa was clueless about how to tip.

"She's never done tipping before and wouldn't know how to figure her tip at the end of the meal," I said.

It had just occurred to me that this was a lesson Marisa was ready to learn and start practicing. Up till now she was able to purchase simple lunches that didn't require a tip, so this was actually a good time to start thinking about teaching her this skill, but it was too late to expect her to do this on her own this time.  We settled for letting John pay the bill, planning to reimburse Marisa's half of the bill to John. The time was set to meet. We would have dinner at the restaurant next door, where it would be easy enough to check in with them if necessary.

As we waited outside the restaurant for John and his parents to arrive, I reminded Marisa to call me on my cell phone, if she had any problems. I also cued her in on topics of conversation she might try while having dinner. I suggested she ask John about his jobs and also what other things he was doing over the summer. When they arrived, John's mom told John and Marisa to go to Red Mango near our restaurant after their meal, where we would later meet them. Then they went in to the restaurant without us.

Once we were seated in the restaurant next door, John's mom decided to check on whether they had been seated at a hibachi table. Some 10 minutes later, she returned to inform us that she had taken them to another hibachi restaurant on the next street, because they had not been seated at the other place. She said that when she came in to check on them, they were still standing around waiting. At the new restaurant, they were escorted to a table with other people who seemed more than happy to look out for them.

We had just started eating when John's mom answered her phone. "You're at Red Mango?" she asked.

Wow, that was fast! I thought. Marisa is usually a slow eater. She likes to take her time in order to give her stomach a chance to feel full. Being conscious of her weight, this is something she has learned is a good way to prevent overeating.

I'm not sure how much time had passed when my phone rang. I had a strange feeling about it.

"Hi mom, how are you?" This is always Marisa standard greeting. I patiently waited for what was coming next. "I finished dinner now!" she commented with nonchalance.

"You're in the restaurant?" I questioned with concern. "Where is John?" I asked even though I already knew where he was.

"He went to Red Mango," she answered without a second thought, as if it was the most natural thing. After all, that is what he was told to do after eating. He was just following instructions.

"Okay, I'll come over to pick you up. Just stay there." I was concerned for Marisa crossing the busy street alone, something she really didn't have much opportunity or practice doing. We live in a very quiet residential neighborhood, where there is literally no reason to walk except to enjoy the beauty of nature. Everything else requires a drive in the car.

In the meantime, John's mom called him back and told him to immediately walk back to the restaurant for Marisa. As we rushed out to meet them at the hibachi place, we saw John just ahead of us strolling back to the restaurant where Marisa was waiting. When the three of us arrived at the hibachi restaurant, we were told that Marisa was in the bathroom. I questioned the hostess about whether the bill had been paid.

"Everything was fine," she said.

Marisa came out of the bathroom and happily greeted us, as we then walked back in the direction of Red Mango, so Marisa could purchase her dessert. When I asked Marisa about the bill, she handed me two receipts. One was charged on John's credit card and one on Marisa's.

"How much tip did you leave?" I asked Marisa. I was confused about how they managed to split their bill.

"I gave a dollar!" she said very proudly. Yes, I definitely need to teach how to calculate a tip.

Though a bit stressful for us as parents, fortunately there was no harm done. However, we realized there was so much to learn from this experience.

As parents and caretakers we need to remember that those on the autism spectrum often take things very literally. Being told to go to Red Mango after dinner, was exactly what John did. He went to Red Mango after completing his meal. Oddly enough, Marisa was still eating, so to both John and Marisa, it seemed totally normal for him to leave and for her to stay and finish eating.

John was good at paying his bill, just as his mom had told me. He had even managed to get Marisa to split it on her own credit card. I still don't know what happened with the tip. I'm assuming that John figured it in, and the cashier split the total between the two cards.

Though it might not be fair for me to comment on people with autism lacking empathy for others, it appears that in this case neither Marisa or John were concerned about each other's feelings. They were simply doing what they were told. John was going to Red Mango, because that's where he was told to go hang out after dinner. Marisa was finishing her dinner, something that she always did. She wasn't in the least bit concerned to be left alone with a bunch of strangers, as long as she had her dinner to finish. Once her meal was over, she did what she felt was the right thing to do based on what I told her. She called her mom, because she was confused about what she should do next. Marisa needs practice crossing streets, and she knew I wouldn't want her to cross the busy intersection alone to go to Red Mango. I'm grateful that she thought this through, rather than being impulsive and guessing what the right thing to do would be.

Will we be trying this again? Absolutely!
Will things go better next time? Hopefully!
What I do know for sure is that if we don't give our young adults on the spectrum a chance to try something new, they may never learn and grow. There's only one way to learn ... by experience!
Will it always be perfect? Probably not, but at least it will be one step in the right direction on the road to leading a more autonomous, independent and fulfilling life.

If I was Marisa's age and my date left me sitting in a restaurant to finish my meal alone I probably would have been angry and traumatized. So what does Marisa have to say about her experience?

"Mom, next dinner with John will be at Applebees!"

Facing Our Own Mortality

It's been three months since I've written on this blog. One of the reasons for the gap is the passing of my father, who was 93. Just over 2 years ago, my dad suffered a head injury at a restaurant while out for a pleasant lunch with my mom. He had missed a step in the dark, and ended up in the hospital, but was quickly released when nothing showed on his CAT scan. Then two weeks later, he fell backward on his head, while at home. There was no apparent reason for the fall this time. This was followed by 3 months in a rehabilitation center.

When he was released and sent home, my mom expected my dad to bounce back to himself. Unfortunately, this was not going to happen. Instead it was the beginning of a quickly spiraling downhill fall in to dementia. He lost speech, partly because of his inability to hear. I managed to get him to the VA to be fitted for hearing aides, but once he had them, he was too stubborn to use them or unable to navigate their use. There was something changing rapidly in his brain. What ever the cause for the change, it was inevitably clear to me that my dad was already gone. He was slowly being taken away from those who loved him as if walking backwards away from us until he just disappeared.

As sad and tragic as this was, it meant two things for Marisa. She was starting to show genuine feelings of loss even in the early stages of my dad's decline. Even with her own disability, she was able to recognize that grandpa wasn't the same. Grandpa was here, but he wasn't here as the person she remembered as she was growing up. My father slowly forgot who she and my other daughters were, long before he forgot who I was. He didn't remember that I had 4 daughters and then he didn't remember I was his daughter. He just seemed to know I was the nice lady who came to help his wife, and that the younger girls were just pretty girls visiting.

Then when he passed away on April 6, I wondered how to deal with the funeral. I didn't know if Marisa would be able to handle attending such a solemn event. I didn't want Marisa to attend. I thought it would haunt her. I thought she might laugh inappropriately. I was worried she would distract me away from the attention I needed to give to thoughts of my dad at the funeral. My husband felt it was wrong for her not to attend, and after some serious thought, I realized he was right. Then I agreed to have her there. So she attended the funeral, and she went to the cemetery as well. Marisa conducted herself in a mature manner, showing respect for the seriousness of the occasion.  I was proud of her and was happy that she was there.

In the days that followed Marisa's thoughts were her own. Then one day she started to express those thoughts, usually while riding to some destination in the car.

"I miss grandpa!"

"We all do," I answered, and I would try to explain that he lived a long, full, rich and accomplished life. He ran his own business in advertising for over 50 years. He was also an accomplished artist expressing  himself through watercolor, oil paint, acrylic and stained glass. He also built furniture and had a fascination with clocks that lead him to build his own grandfather clock. He was fully active and artistically engaged till he was 91.

"Grandpa was not happy after his accident. He could no longer do the things he enjoyed in life. When that happened to him, he didn't want to be here anymore. Life was no longer worth living."

If Marisa understood my meaning about the quality of ones life, it didn't take away the sting of death.

"I don't want to die," she answered.

"You're young and healthy and full of life with so much to do ahead of you," I offered encouragingly.

And I once again reminded her that grandpa lived a very full life.

Marisa still continues to mention how much she misses grandpa. It's made me realize that even though autism has made it difficult for Marisa to think about the needs of others, she has found room in her heart to express sadness and compassion for the loss of a family member.

But what struck me most of all was a comment she made to me on one of our car rides.

"I want to live to be over 100," she said.

That comment did not surprise me. We all have the same thought.  What did surprise me was her comment just after that:

"I want you, daddy, Shoshana and Deborah to live to be over 100 with me."

We are the people most important to her after all. I always thought she would hardly blink if something happened to my husband or myself. Just knowing that we are so cared for by her makes me realize her love for us is as real as any, even when it doesn't always show. That realization brought joy to my own heart, taking away any doubts I ever had about what I mean to my daughter on the autism spectrum.

Is a Free Gift Card Really Free?

How gullible our kids with special needs are! There are two things I tell Marisa over and over.

"If it's too good to be true, it's not true."

"Nothing in life is free."

I've told her each time she was fooled in to believing some advertisement for something free or something that will work like a miracle. Marisa finds it's much more fun to believe what she hears or reads. That seems like a fun idea till the reality hits home.

Usually when I answer the phone, and it's someone calling for Marisa with some promise to make her a star, tell her she won a vacation or offer something "free" I usually just send them on their way and hang up. Something got me to do otherwise the other day. Maybe it's because I'm tired of having the phone ring with some scam artist calling for Marisa, or maybe it's just that I would like to believe something exciting and fun can actually happen, and on occasion it actually has happened for her in the past. I do remember Marisa winning a $100 gift card to one of her favorite stores, and receiving very nice prizes for contests entered every so often. So when the phone rang, and the caller asked for Marisa, this time I wanted to believe that maybe there still was some goodness in the world, and maybe Marisa was actually going to be a winner once more! So this time when the caller asked for Marisa, I answered, "Yes, that's me!"

I was ready to play this out for good or bad. If it was an innocent contest and she was a winner that would be fine, but if this was a scam, I wanted to be able to teach Marisa something about tricks to fool consumers into purchases they don't need. I wanted her to learn how to become more aware, able to question and be less gullible.

I learned that Marisa had contacted this provider through an advertisement probably on one of the social networks or in a magazine.

The offer was for a $10 gift card to a store in our region.

"What's the catch?" I asked.

"Oh ... there's no catch! I just need to ask some information about you."

I was already getting nervous about this. "Exactly what do you want to know?" I asked.

"I need to know what kind of magazines you like."

"Why?" I asked.

"Because you are going to get 5 free subscriptions to the magazines of your choice!"

"WOW! How exciting ... but what's the catch?"

"There's no catch. You will get five magazines completely FREE! All you have to do is pay $3.99 each week for a period of time."

"And you call that free?" I asked.

"Well considering the magazines could be up to $29 for a yearly subscription and you're getting a $10 gift card as well, it's a pretty good deal!" he said.

"I don't think so" I answered.  "I didn't plan on ordering 5 magazines and I don't need a $10 gift card either, so take my name off your list and forget the whole thing."

"I gotcha!" was the reply, as he hung up.

Then I knew that Marisa would never be able to realize the extent of this scam. She would have been fooled in to spending money for something she didn't need just so she could get a $10 gift card.

I knew we needed to have a serious conversation when she got home.

Would she understand?

Later that day we did have a talk about the free gift card, and once again I reminded her that nothing is free.

Did she finally get the meaning?

Later that week, Marisa asked if we could go to the mall.

"What are we going for?" I asked.

"Oh, I have coupons for some of my favorite stores!"

"Do you need anything right now?" I asked. "There will always be other coupons."

Marisa opened her bag, took out the coupons, checked the dates and threw them away. "Maybe, I'll save my money and wait till there's another coupon," she announced with a sigh of satisfaction in her voice.

It wasn't a scam she was rejecting, but it certainly was a step in the right direction!

The Lost Scrungee

Several months ago Marisa came home from swimming and found her hair scrungee missing while emptying her backpack of all the items.

"Mom, I can't find my scrungee! Where is it!" she cried with noticeable panic in her voice.

I could sense the panic mounting like a volcano rumbling just below the surface, ready to erupt and overflow with it's hot and volatile lava. Sure as a volcano is to erupt, I knew that if Marisa didn't find her scrungee, she would most likely enter upon a full fledged meltdown. I tried reasoning to keep her feelings at bay.

"I'll help you to look for it," I said in a calm even voice, trying to make light of it. "Are you sure you packed it in your bag in the locker room?" I asked, not wanting to waste time looking for something that clearly might have been lost at the gym.  You must be thinking, How crazy is it to waste time looking for a simple stretch hair band to hold a ponytail? Surely, one is the same as the next and easily replaceable? Yes, they are easy to replace if they are the basic hair bands, but nothing Marisa chooses to wear is basic. Her hair bands are not just special but are chosen to match certain outfits as well. Once lost, such items, though not costly, are hard to replace with exact duplicates.

So off we went room by room looking for a light pink scrungee with fuzzy fluff all around. We checked the bedroom furniture and floor. We checked the bathroom counter and floor, even lifting the rug. We turned the backpack inside out. We looked under the bed. We checked the wet towel and wet bathing suit. We checked the car, and the path from the car in to the house and down the hall to the bedroom. Then checked everything again. When all was done, I turned to Marisa and said as calmly as possible, "It must have been lost at the gym. Maybe after you packed it, it somehow fell out on the floor while pulling out your pants or shirt to put on. Maybe you should pack the hair band in an outer pocket away from the clothes from now on," I concluded, as I was ready to drop this subject and chalk it up to a new experience to learn from.

But Marisa wasn't having any part of it. She was relentless as she screamed and cried that it couldn't be lost at the gym. I knew it was ridiculous that she could be 22 years old and cry over the obvious conclusion that I had made, so realizing that there had to be more to this mystery, I asked what should have been the obvious first question, "Did you see it here in the house when you got home?"

"Yes," she replied as she continued crying.

"Well then, where did you see it?" I asked.

"It was in the kitchen. I took it out of my bag there," she said.

Now we were getting somewhere, I thought.

"Then lets go back to the kitchen and look there," I said. Why didn't we look there to begin with?

Once in the kitchen, I asked Marisa to show me where she was when she took the scrungee out of her bag.

"I was over here by my chair," she said.

I went to the chair and looked down on the floor. There under the table was the fuzzy, pink scrungee!
You can just imagine the relief and joy I felt ... yes, joy over finding the scrungee!

"Look!  Here it is in the dark shadow under the table!" I called with relief and exhilaration.

 She knew she had taken it out of her bag and that was why she was so frustrated at not finding it in the first place. Imagine how annoying it is to know something is there, but you can't find it. It has happened to all of us at one time or another.

"Next time, instead of panicking and crying, think back to what you were doing and where you were when you misplaced something. You will have a better chance of solving the problem on your own."

That was a good eight months ago. There hasn't been a single panicked moment since. There have been other similar situations, but thankfully, Marisa has learned to solve many of these by using her head to think things out.

While in the locker room after swimming last week, I was waiting for Marisa to dress. "Do you have your scrungee?" I felt compelled to ask.

"It's in the front pocket of my backpack," she answered.

And I thought, Another lesson learned from one small moment!