Wednesday, February 24, 2010

Helping Our Children Understand, Express and Overcome Sadness

I contemplated the subject of my next post as Marisa sat eating an orange. Then I noticed the familiar tears forming in her eyes. She was not quite ready to vocalize her sadness, but I knew at once that it was coming. Who knew what thoughts were brewing in her head to make her suddenly look so sad? Marisa was clearly not her usual jubilant self. Just yesterday afternoon she was dancing and bouncing in time to her favorite tunes on the computer, playing Wii fit and running on the treadmill with her Ipod. Now she was sitting quietly, thinking with tears in her eyes.

I checked the calendar to see if it was that time of month, but when I realized it wasn't, I asked,
"What's wrong Marisa?" She then started to cry in full with tears running down her rosy cheeks. "I want Joey to come to teen lounge," she said in answer to my question. I knew that Marisa had located an old friend from elementary school on Facebook. In fact, she found many old friends on Facebook and sometimes was able to renew a friendship that way. "Well ... e-mail him about teen lounge, and maybe he will come," I suggested, but this didn't seem to be helping her overcome her sadness.

Then I remembered an incident that occurred many years ago. She was sad then too, because a friend she met, at her pre-school for special needs children, was graduating and moving on to an elementary school. She cried and cried day after day about her friend Chris who she would never see again. The children in her school came from many surrounding school districts. Unable to control when and if she would ever be able to see her friend again, she was feeling helpless.

At the time, I told Marisa we could write a letter to her friend and give him her phone number. Marisa's teacher let Marisa deliver the note to Chris who brought it home to his mom. Just being able to do that made Marisa feel she had some control over what would happen. At least she could feel that she was doing something to try to continue the friendship. She felt empowered and came home happy that day. Chris's mom did not call right away, but at least the sadness had passed, and in it's place was a sense of hopefulness. As it turned out, we didn't hear from Chris or his mom, but there were other things to do and Marisa made new friends. Then one day in late August, the phone rang! It was Chris's mom explaining how they had been away on a trip and had saved Marisa's note for when they returned. What a joy it was to Marisa to hear from her old friend! We arranged a get together, and the friendship has continued all through these years.

Now faced with a similar situation, I suggested to Marisa that she write a note to Joey about teen lounge, and include all the necessary information so he could show it to his mom. "Tell me what you want to say, and I will write it down. Then you can copy it in your own writing," I said. Marisa wiped her eyes and blew her nose. She was looking a bit happier. "Okay," she said. As I wrote the words she wanted to say, encouraging her to add the necessary information, the letter formed. Then Marisa went in her room to re-write the letter in her own handwriting and brought it back to put a stamp on the addressed envelope. "Mail it tomorrow!" she said with a hopeful ring to her voice. "First thing in the morning," I answered.

I woke up to a dreary, cold and rainy day, but as Marisa trudged out the door in her rain boots, she was looking optimistic. "Have a nice day!" I said as she left. This afternoon when Marisa returns, I am hopeful that she will be her usual happy self. Understanding the reasons for her sadness, we worked together to overcome the sense of hopelessness she was feeling. Even if Joey never comes to teen lounge, at least Marisa knows that she tried. And who knows! Maybe the simple act of writing a letter can make a dream come true once again. And if not, then at least there's hope to replace the sadness.

Thursday, February 18, 2010

Learning to Accept Disappointment

How many times have we all been disappointed by changes in plans? Maybe you planned a barbecue and it rained, or you planned a party and your best friend was going to be out of town. Disappointments happen to us every day, and we have to learn to bounce back, accept it, and make the best of it.

Last year my husband and I planned a trip to Disney World in Florida. It wasn't exactly our number one choice for a family vacation, but it was Marisa's desire to go that prompted us to finally plan the trip. Our other children had been to Disney World before Marisa was born, so Marisa, feeling she had missed out, was eager to have the opportunity to go too. We were all set to go! Then a week before we were to leave, Marisa came down with a fever.

She was disappointed to have to stay home from school because of her fever, but was willing to stay in bed ALL DAY if it meant that she would recover for our trip. In all honesty, she was too weak and too uncomfortable to get out of bed. After a trip to the doctor we were told to wait a couple of days to see if she would improve on her own. When Marisa showed no improvement we returned to the doctor. He then placed her on an antibiotic and assured us that she would recover in time for the trip, so Marisa went home relieved and climbed in to bed to wait for the fever to go down. When there was still no improvement on antibiotics 3 days later, we returned to the doctor. "I want to go to Florida tomorrow!" Marisa said. "You won't be able to enjoy a trip if you're sick," I replied. After seeing the doctor and having an X-ray, we finally understood what was wrong. Marisa had pneumonia! Because the anti-biotic wasn't working, the doctor advised admitting her to the hospital immediately. It was a snowy day and we were sent home to pack for a trip to the hospital. Imagine Marisa's disappointment! Instead of packing for a warm, fun vacation, we packed for a hospital stay.

Marisa was too sick to think much about disappointment, but as she recovered we told her that she would get to go to Florida another time when she was feeling better. It would be something to look forward to again. We assured her that it was not something she would never get to do.

Then, this year we rescheduled our trip to Disney in Florida. Not only did Marisa enjoy the trip immensely, but I'm convinced that she enjoyed it a whole lot more! Her appreciation and anticipation was greater because of the disappointment she experienced when her first trip had to be canceled.

More recently, one of Marisa's friends had to have his birthday party postponed because of a blizzard. That was a big disappointment, but at least the party was to be scheduled for the next week. Then another snow storm arrived the day of the rescheduled party. How devastating this was to the birthday boy and all his friends! Fortunately the storm was not quite as bad as it could have been so the party did take place, but the anticipation of the party was so much greater for all who attended. Just seeing the bright smiling faces showed how much more meaningful this party had become.

Thinking about the concept of disappointments makes me wonder. What would it be like if we had no obstacles in our lives and everything always went exactly the way we wanted it to? How boring would that be? There is greater joy in life when it is mixed with disappointment. No one wants to be faced with obstacles, but it happens to all of us. So the next time your special needs child or young adult is disappointed about something they didn't get to do, don't forget to remind them that when the time does come to do that special thing that they want, it will be that much better and more rewarding. And lets not forget to tell the same thing to ourselves.

Monday, February 15, 2010

Where and With Whom Should My Adult Child Live?

Helping our children with autism learn and grow alongside neuro-typical children is a difficult task. Many of our kids may be struggling through public school in inclusion classes or in self-contained special needs classes and many others may be in special schools. Some may go on to college and earn a college degree and others may earn a high school diploma while still many more may only earn an IEP diploma. No matter what kind of degree our children earn, there comes a time when we also need to think about where and how our special needs adult child with autism will live. The day will come, and sooner than we realize, when there is more to think about than the academic achievement or lack of achievement they have earned. Unfortunately for many of us, the focus remains on academic achievement at the expense of social skills and the need for understanding how to navigate in the world outside the classroom. That is why it is so important to take advantage of those small moments to learn from in every day life.

When Marisa was 15 years old, I started to fill out applications for supported living once she became eligible at the age of 21. I knew that she would most likely not be able to live independently, but I wanted her to be able to have a life of her own ... a home that she could call her own and not her parents home. I felt that for Marisa, this was a step toward becoming the autonomous person she so wanted to be and not be defined by living with us. So I filled out many applications and was content that Marisa was on many wait lists for housing.

Then, more recently I realized that perhaps it would be a better idea to plan not just how she would live but with whom she would live. I also realized that as much as I'd like to pick and choose the people my daughter would live with, it would be even better and more empowering for her if she could test out who she was comfortable living with. With that in mind, I set out to work at planning social events to see if Marisa and some of her friends could get along in social settings that could later lead to long term permanent living arrangements.

In an effort to explore options I set up a lunch date with one of Marisa's girlfriends and her mom. A good deal of Marisa's friends are boys. This may not be surprising since there are 4 times more boys than girls on the autism spectrum, but for the purpose of seeking potential room mates, it seems more important to seek out girls that Marisa would be compatible with. I was pleasantly surprised to see that the girls were able to enjoy a lunch together, and interact with some conversation. Later back at our house, they were also able to enjoy Wii bowling and Dance, Dance Revolution for Wii and then watched some of the Olympic events in Vancouver. During commercial breaks Marisa would leave the room to check her e-mail and then return to see what competition was taking place at the Olympics.

Three hours had passed and the girls were still busy together. Then Marisa came in to the kitchen where I sat talking with her friends mom and said, "I want to do my workout on the treadmill." I sensed that she was having some mixed feelings about ending her get together. "Go change and go on the treadmill then. You can still watch the Olympics in the same room since that's where the treadmill is anyway," I said. I thought to myself, this may not have been the most polite thing to do, but it certainly was better than hearing Marisa ask her friend when she was going to leave. Marisa did not answer me, but stood there thinking about it. She then went back in the den where her friend was still watching the competition. Another hour passed, and I realized that Marisa had made a wise decision. She chose to put off her workout, because her friend was still there. This actually surprised me, because if Marisa didn't care about her friend she would have probably asked her when she was going to leave so she could do her workout. Marisa usually says exactly what she's thinking and apparently she was thinking that her workout could wait. She made a wise decision ... to be polite and spend the time with her friend. Do I think these girls have the potential to live together? I think the answer is most definitely a yes. We'll continue to build on her friendships in the hope that moving out of our house some day will be an exciting adventure among friends rather than a traumatic step into the unknown.



Wednesday, February 10, 2010

The Ability to Solve Problems Comes With Maturity

Yesterday I was on the treadmill when I heard Marisa baffled over a problem on the computer. She had just come home from school and was following her usual routine which included checking out her e-mail messages from friends and going to her Facebook page. "Where are they? I lost them!" I could hear her repeating this over and over and thought to myself, Oh no! Something's wrong with her Facebook page. Anger is soon to follow. As I was about to stop the treadmill and check it out, the problem seemed to have resolved so I continued my workout.

Later, when I got off the treadmill I asked Marisa what had happened. "Oh, I thought I lost my friends but it's okay now," she said. "Alright!" I answered and I went about making dinner. Then later that evening I went on the computer to check my own e-mail and saw that 10 of Marisa's friends sent me messages on Facebook accepting my friendship. "Marisa, what did you do? I have your friends accepting me as a friend on Facebook!" I had been reading some 200 comments on the guest blog written by Liane Kupferberg Carter entitled Cure Du Jour which had been posted at the Autism Science Foundation Facebook group page. The article involved Dr. Wakefield, the British physician, who had his license revoked for the unscientific procedures he used to conclude that autism was caused by vaccines. This was a very controversial subject and after reviewing the many comments, I apparently forgot to log out.

Then later Marisa assumed that the Facebook page that opened was hers. Considering the fact that Marisa has some 150 friends on her Facebook page, seeing only a sprinkling at first glance had to be very upsetting to her. So rather than get all upset and throw a fit, she went about requesting her friends all over again. This would have been just fine if it was on her Facebook page. But that was not the case. So, once I realized what had happened, there were two things that needed to be done. I instructed Marisa to always check the profile to make sure she was actually on her own Facebook page. Marisa also needed to send messages to all her friends to let them know that she accidentally invited them to be MY friend, because she was on my Facebook page. Oh well ... for me the Facebook messages keep coming to my e-mail. Marisa's friends are accepting me as their friends.

Later I asked Marisa, "How come you didn't have a tantrum when you were confused about where all your friends had disappeared?" "Babies have tantrums and I'm not a baby anymore." she said. "Good for you! I'm proud of the way you handled this problem and you should be too, but next time please make sure you're on your Facebook page," I said. I also realized that I had learned something from this experience too. Don't EVER forget to log out of Facebook again!

Monday, February 8, 2010

What If?

So many times we wonder about things that could go wrong with our children. And here is where many of us can come up with more than one frightening moment in the past that hopefully turned out alright. When Marisa was 14 years old I felt it was time for her to learn to use a key. Now this is not one of those small moments that you can expect your child to instantly learn from. It is one of many small moments over an extended period of time that add up to making this a learning experience.

How should I go about teaching Marisa to use a key? That was the question. For children with special needs, learning to open a door with a key should be approached in teeny, tiny steps just like children learn to talk or read in small stages over time. In fact, for Marisa, it took a good two years to learn to use a key to open the door when she came home from school each day. It was well worth the time and effort it took for her to accomplish this goal ... and in this case, she didn't even need to earn points on her goal chart as a motivator. Rather, she knew that by learning to use the key when she came home, I was helping her earn the special gift of trust and independence. She so wanted to be able to do this one thing on her own, that she was willing to follow through with the steps required to learn the skill without having to earn points.

We began with my usual routine of meeting the bus as she arrived home. I had the key for her. I would show her how to hold the key in the right position for placing in the keyhole. Over a number of months I let her practice placing the key in the proper position. The next step was learning to turn the key the correct way to open the door. Once she was inside she needed to learn how to successfully shut off our house alarm and then reset it.

When I was certain that she was able to open the door and turn off the house alarm, Marisa and I needed to decide together where she could safely keep her key attached in her backpack, so that she would be able to retrieve it and place it back once she was inside the house. Again, for many months I met her outside. I watched her take her key from her backpack, use it to open the door without my help, turn off the alarm, reset it and put her key away in the designated place in her backpack.

The day came when I told her I would be watching from inside the house. She was so excited, she could hardly wait to come home from school! Many days I watched Marisa from inside the house, before I was absolutely sure she had learned this skill well!

Then one day I was coming home from an appointment and was caught up in an awful traffic jam. I was only 5 minutes from my house, and Marisa was not due home for another 30 minutes. I didn't think there would be a problem, but as I watched the minutes tick by, I started to get nervous. The cars were barely moving. What if I don't make it home in time? Will Marisa be able to open the door as successfully as she had been doing for these last few weeks? She was about to be tested!

Then the moment of truth arrived. The day had come when I would find out if all our hard work would pay off. As I inched closer to the house in an endless line of crawling traffic, I realized with a sinking feeling that I would not be home in time. I wasn't sure if I was more nervous about whether the bus driver would not let her off the bus because my car wasn't in the driveway, or whether Marisa would safely let herself in to the house and shut off the alarm in time.

Then I saw Marisa's bus pass me by in the opposite direction. I called the house from my cell phone, but there was no answer. Was she inside, or was she struggling with the key outside the house? If she was there, she wasn't answering the phone. I decided to leave a message in the hope that she would hear it if she was in the house.

I arrived home in a panic, racing down the driveway and coming to a screeching halt. I raced inside and realized that the house alarm was on. I turned off the alarm and listened. It was quiet in the house. Oh! ... I figured Marisa's bus didn't drop her off after all. Seeing my car was not there when they arrived, they probably decided to keep her on their run for a while longer. I was actually disappointed that this was the case. Then I walked into the kitchen. There she stood ... her eyes and mouth wide open with a questioning look! "Marisa! You let yourself IN and turned the ALARM back on? WOW! You did such an amazing job!" I said as tears of joy ran down my face. "Are you okay?" I asked. "You weren't here!" she said in a somewhat nervous voice. "I know. I was stuck in traffic, but you were only alone for a few minutes, and look how well you did letting yourself in! You should be so proud of yourself!" I said.

This What If? is one I knew I would never have to worry about again. Those two years teaching Marisa to use the key to the house were well worth every minute.

Saturday, February 6, 2010

We Can't Learn by Covering Up a Mistake With a Lie

After having her 4 wisdom teeth removed this past week, Marisa was on antibiotics as a precaution against infection. She needed to take 4 pills a day which was difficult to work out considering her busy schedule. However, we kept a chart together, and each day we worked out a schedule for when her pills would be taken.

Yesterday was the last full day for her to take her antibiotics. Last night after returning from an evening social group, I reminded her to take one pill before bed and the last one the next morning. Unfortunately, I fell asleep in the den and did not remind Marisa to take her bedtime pill. When I woke up later in the evening, I checked her pill container and was disappointed to see that there were 2 pills left which meant she had forgotten to take the late evening dose.

This morning I looked in her pill container and saw that both pills were gone. "When did you take the 2 pills?" I asked. "Ohhh, I took one last night ... and one this morning!" she answered. "Well, how can that be?" I asked. "I saw two pills there late last night. You didn't take one last night." I realized that Marisa was afraid to tell the truth. She probably thought I would be angry at her. "Marisa, if you forgot, it's not that terrible, but at least tell me when you took the pills," I said. "I took the 2 pills this morning!" she cried out. "Okay, so it's better to tell the truth than to lie. We all make mistakes, and we all forget things sometimes. If you had asked me this morning, we could have come up with a solution for how to handle missing a dose."

Marisa learned that she had more to lose from not telling the truth than from telling the truth. "Always tell the truth," I said, "because you can learn from your mistakes but will never learn anything by covering up a mistake with a lie."


Wednesday, February 3, 2010

Gentle Guidance Toward Wise Choices Builds Confidence

Marisa was due to have all 4 wisdom teeth removed this past weekend. The thing that excited her most about the event was that the doctor was located close to one of her favorite malls. "After my teeth are pulled out, lets go to the mall!" she said enthusiastically. "Well ... okay" I said, "but let's see how you feel!" "We'll go to the mall!" she replied.

I realized that it wasn't worth arguing over. I figured Marisa would come to her senses once the oral surgery was over.

We arrived at the doctor's office at 8:45 AM on Saturday morning. It was a very cold but sunny day, and Marisa was eager to get it over with so she could drive 5 minutes down the road to the mall where her favorite stores were. She came prepared with her coupons and wallet.

The dental assistant came out and asked Marisa to remove her jewelry and glasses which were placed in a cup for safekeeping. She handed me the cup to hold for her and eagerly went in to the examining room while I stayed back in the waiting room.

About 10 minutes later Marisa emerged, cheeks puffed out with gauze wrap to stop the bleeding, having a stunned wide-eyed look on her face. "Replace the gauze a couple of times in the next 45 minutes," I was told by the doctor. We were given a prescription for an antibiotic and sent on our way with extra gauze and an instruction sheet.

"Well!" I said as we left the building no more than 45 minutes after we had arrived, "Should we go to the mall or go home? We can always go to the mall tomorrow!" "Go home!" she said. We'll go to the mall tomorrow."

I was happy that she was able to put the mall trip on hold for at least one day.

Later that afternoon, I watched as Marisa danced to her favorite music on iTunes. It was good to know that she was able to make a wise decision based on how she was feeling. That's why it wasn't worth worrying in advance about what decision she would make. Rather than forcing her to go home, I gave her the opportunity to make that choice on her own. This not only enforced my faith in her ability to make a wise choice, but gave her the chance to feel confident with her decision.

Tuesday, February 2, 2010

Chasing the Bus? Could It Be?

As parents we instinctively know when we are able to trust our kids to do certain things for themselves. For example, we know when our children are able to choose their own clothes and dress themselves. We know when they are able to feed themselves on their own too. Then, as they get older and more capable, we seem to know when they are able to wait for their school bus without us standing right next to them.

When Marisa was 14 years old, I finally had the sense that she could be trusted to wait for her bus in front of our house without me standing with her. However, because we have a long driveway, and I didn't want her standing near the road, I insisted she wait by the garage door.

Marisa needed to feel that she was grown up enough to wait alone, but every day, being extra cautious, I watched from the window inside the house. She knew I was watching from inside. I told her I wanted to be sure she was doing the right thing. This did not in any way make her feel less capable, because she knew that, later in the day, I would compliment her new ability. It was equally important for her to feel she was more autonomous as it was important for me to be sure she approached the bus safely.

But, then again, what if something out of the ordinary happened and a quick decision had to be made? We've all had that experience in one way or another. One has to wonder if a neuro-typical teen would make the right choice, let alone one with special needs. So one day something out of the ordinary did happen, and Marisa's ability to make the right decision was tested.

It was a cold winter day and Marisa was waiting for her bus in front of our garage door. The bus pulled up as usual, slowed down, and then suddenly continued past our house. All of a sudden Marisa started yelling and crying "Wait for me!" as she ran down the driveway and up the road at incredible speed. I jumped up and ran out the door in my robe, screaming after her, "Marisa come back!" Fortunately Marisa knew, from earlier lessons, that if I was calling, then she better respond. As she ran back to me with tears running down her face, I told her that chasing the bus was not the proper or safe way to handle this problem. I immediately called the bus company to tell them what had happened, and was informed that there was a substitute bus driver that morning. Apparently the driver didn't see Marisa and didn't think that he needed to wait.

For Marisa, the lesson was to never chase after a bus, no matter what, but to come in to the house to inform me instead. Then we could call the bus company and correct the problem. I dread to think what would have happened if I had not been watching from the window, but the good thing is that Marisa learned what the safe and correct procedure is for handling this kind of problem. Since that day there have been a few similar occurrences with the bus and I am happy to say that Marisa has handled them all appropriately. "A decision well made!" I'd say.