Guiding Your Teenager with Special Needs through the Transition from School to Adult Life

This is the title of a book I read by Mary Korpi, a Licensed Mental Health Counselor (LMHC) and a Vocational Rehabilitation Counselor in Long Island, New York. This book is a wonderful resource for parents. It is full of information on how to guide young adults with developmental disabilities toward a  successful transition into adulthood. Developing autonomy, learning to self-advocate and preparing for the grown-up world of work by building responsibility into your child's routine at an early age and creating incentives and motivation, are all vital aspects of transitioning to adult life. This is all meticulously covered in this well organized book.


From the early years when parents should begin to give a child responsibilities for jobs at home, to the process of transition planning, to the search for programs available once school ends ... it's all here in this very compact book that also includes many other helpful resources for further reading. For parents of newly diagnosed children to those already transitioning out of school, there is something for everyone!

The Happy Shopper

We all know the feeling we get from planning a shopping trip to the mall. Usually we have something in mind that we are looking for ... a new pair of sneakers ... a dress for a special occasion ... new clothing for the upcoming season. Speaking from a woman's point of view, I think I can safely say that most women love shopping. Marisa is no exception. She would happily go out to shop every week-end if I were willing to take her, but since I have been teaching her to budget herself for the month, she has cut back a bit. Recently, she approached me to ask if we could go to the mall. She had cash in her wallet but knew it wouldn't be enough to cover her shopping excursion. I was pleasantly surprised when she asked how much money she had left in her account for the month.

 "Well, that's a good point!" I replied. "Let's take a look!" 

I pulled out the notebook where I have all her monthly expenses recorded and we checked the balance.

"It appears that you have about $150 left for this month, but we're not even halfway through the month. You will need to save some of this money for unexpected expenses. What do you need?" I asked. I then noticed Marisa had a collection of coupons in her hand for various stores.

"I have coupons that are going to expire, so I have to use them this week-end," she answered.

Marisa didn't seem to understand that the coupons were simply a way to get her in the store, even though I had explained this to her numerous times. I mentioned it again, but she seemed to disregard what I said.  She clearly had her own agenda.


There were 5 stores Marisa was planning to look through with very particular ideas of what she wanted to purchase. To be perfectly honest, once she explained what she was going to shop for, I actually felt it made sense to try to use the coupons. For example, she wanted more collared shirts for work, but needed the short sleeve version since the weather was warming up. She had a coupon for the store she was hoping to find this item at. She wanted shoes for the school prom and was planning to check out another store where she had a coupon. Among other items on her list, it all seemed to make sense. We went from one store to another but on this particular day, Marisa was not finding a single item that she felt was right for her. At this point, I was expecting her to start getting frustrated and angry. Odd as it seemed to me, but pleasantly surprised by her calm way of handling one disappointment after another, this didn't happen. After two hours at the mall Marisa had had it.

"Let's go home! I'll throw away these coupons and wait for new ones," she suddenly commented.

"You are so smart today," I said. "That is such a good idea!"

When we arrived home, Marisa took her wallet out of her bag. She opened it to remove the collection of coupons she was storing and tossed them in the garbage.

"Maybe I'll wait," she said. "I have time, and we can go another week-end."

I thought about all the times I had been telling Marisa to space her shopping trips throughout the month, so she would have enough money to last, not just for purchases in stores but for recreational activities like movies or lunch dates. I thought about all the times I had told her that coupons are just a way to get you in to the store, and that there will always be more coupons. Then I realized that something was clearly happening. Marisa was thinking things through. She was learning to delay her gratification. She was learning to make wise choices. She was becoming a wise shopper. My mini lectures were not wasted on her. She had been listening all along. She was ...  growing up!

Is it Possible That There's a Role Reversal?

Back in February 2011 I wrote a post entitled Moving Ahead on the Road to Independence. It didn't occur to me then, that the task of teaching Marisa to prepare salads for our family dinner would be mastered as quickly as it was. Marisa learned to prepare a salad using 8 vegetables. She learned to wash and dry the vegetables, cut by hand and use the food processor to shred and slice others. This is not your ordinary lettuce and tomato salad. It is a favorite combination of vegetables and seasonings that I use to prepare our dinner salad every day. It never occurred to me that Marisa would master this goal completely in less than two months. I am happy and proud to say that she has done just that!

So how is it that Marisa was able to accomplish this goal so quickly I asked myself? Then I decided to ask her that question.

"I'm going to move to my own apartment!" she answered.

I was surprised! But why should I be surprised? Marisa, just like any young person on the brink of adulthood, is eager to assert her independence. She is trying to learn all things necessary to accomplish that goal. And one thing that she should be able to do is prepare her meals. So, preparing a salad may not require oven cooking skills, but it does require some understanding of hygiene in handling food and some knowledge of how to handle knives and a food processor safely.

Then a couple of weeks ago I walked in to the kitchen after completing my treadmill workout. There was Marisa already busy at the kitchen work island. She had assembled the salad bowl, the cutting board and all the ingredients for the preparation of our dinner salad. WOW! I thought. I never even asked!

"That's great Marisa! You've started my salad for me. I'll help you get it done," I said.

What really surprised me was what she said to me in response.

"Mom! Do you like helping me out?"

I looked over at her as she busied herself cutting red pepper into precise 1/2 slices. I was amazed and delighted by her question. This is truly a role reversal! 

"I absolutely do! I love helping you out and watching you do such a super job too!"

I feel blessed and grateful that she is eager and able to learn these skills. Then I thought about all the time and hard work teaching Marisa the skills she needs to help her manage on her own. She really, really wants this. No matter how long, I will share her pride when she is able to accomplish this goal one day. The time and effort will be well worth it for both of us. 

A Trip to the ER

3:50 PM ... just a typical afternoon. I was on the treadmill watching Dr. Oz.  Then the phone rang. Marisa was at her after-school program at the JCC ... or so I thought. I answered the phone. I slowly started to realize that something very different had occurred. The bus company was calling to tell me that Marisa's bus was in an accident.

"Marisa's okay! The bus was rear-ended by a car. The police came. They had Marisa taken to the emergency room at North Shore on Community Drive. That's what they do when these things happen and there isn't a parent around to make the decision. I'm so sorry."

"Oh ... who went with her?" I asked.

"The police had an ambulance take her, so you have to go down to meet her there." Again, "So sorry!"

I got off the phone and called North Shore ER.

"Could you check if she is there?" I asked after explaining what had happened to the man on the other end of the line.

"She's not on the list, so don't come here because she might have been taken to another ER," was his answer.

"No" I said, "I was told she would be coming there. She's probably not there yet, so please let someone know that she has autism and may not give expected answers to questions. This could make the examining doctor think that she has an injury from the accident which might warrant admitting her."

"I understand," he answered.

I was thinking back to the time when Marisa was just 2 years old and had developed a fever. I had scheduled an appointment with her doctor. Unfortunately, since our regular pediatrician was on vacation, she was seen by a covering doctor who was unfamiliar with signs of autism. The doctor, confused by Marisa's extraordinary quiet, decided to admit her to the hospital. He refused to accept my explanation of autism, and the result was a 4 day unnecessary nightmare in the hospital for what turned out to be just a cold. We were finally released when our regular doctor returned. So having been told that Marisa appeared not to have any injuries at the site of the accident, I was worried about how an examining physician might view her in terms of typical behavior to be expected of a 20 year old.

I quickly freshened up and dressed for the half-hour ride to the ER. A number of really bad thoughts were going through my mind:

Was she perhaps really hurt in spite of my being told by the lady at the bus company office, who was not at the scene of the accident, that she was fine?

What if she was taken to a different hospital emergency room?

The bus company late afternoon shift would be coming on soon. If I needed to call them back, they most likely wouldn't know anything about the accident.

If Marisa was taken to another ER other than North Shore, how would I ever know where to go? I would have to drive around from one hospital to another. Would Marisa be smart enough to give the ER my cell phone number?

So as all these thoughts were racing through my mind, I was weaving in and out of early rush hour traffic in an effort to get to the hospital as quickly as possible. Finally I arrived at the ER, and the attendant told me there's no room to park. I must park up the hill at the main hospital. Frustrated and angry, I drove the mile distance to park, and then ran back down to the ER as if in a marathon. I arrived out of breath and approached the main desk at the ER entrance where the receptionist glanced over the list of patients that were brought in. At last she says, "She's in room 40. I'll take you there."

Relieved, I followed her to the nurses station surrounded by numbered cubicles.

"I'm here for Marisa Rubin," I say.

"Oh, I'm the doctor who examined her. She's just fine!" the young physician informed me.

"Was she worried!" I asked.

"No ... she said you were coming."

I was pleasantly surprised to hear that.

Just then from the corner of my eye, I saw a bouncy curly haired girl jumping off an examining table. It was Marisa coming toward me.

"Hi mom! I'm ready to go!" Her enthusiasm and eagerness to escape the confines of the ER were a refreshing relief.

We patiently waited to have insurance information taken and discharge papers signed. Then we were on our way. Out in the sunshine of the late afternoon, we walked the mile up the hill to the car.

"I missed my after-school program," she said with a sad tone in her voice.

"Marisa be happy! You weren't hurt, and you can go home and do something else. Just think, you get to walk a mile and exercise with me right now!" I said, trying to sound upbeat. "And tomorrow you can share your ER experience."

"I'll check e-mail when we get home," she decides.

The events of the afternoon were unnerving to me, but how pleasantly surprised I was to see Marisa having the ability to take it all in stride. She wasn't hurt, but she could have acted out in anger at having been taken to the ER instead of to her fun after-school program. She managed to handle herself in a mature manner, accepting the unfortunate turn of events with understanding and grace.

"How come you were not so worried about being in the ER alone?" I asked.

"I knew you were on your way," she answered with confidence.

As we walked up the hill together a very pleasant thought occurred to me. How far we have come.

Joy Felt in Sharing A Day With Neurotypical Peers

Marisa has a very active social life, but most of her activities are planned with her friends, all of which are either on the autism spectrum or have other developmental disabilities. But this past Sunday, Marisa had a special opportunity to spend some time with neurotypical peers. A very receptive professor at Keuka College who is using my book to help her special education students learn about life for families living with autism and other disabilities, apparently got some of her students interested enough to take this one step further.  For the past couple of years, the professor has been sending me letters written by her students to let me know what they have learned from my book. Her hope is that her students will gain more from expressing what they learned from me, the author, than simply writing a class paper on the subject of autism.

I have found this to be very rewarding because, these college students are able to gain insight from the years I have spent raising a child with autism. Whether they become special education teachers or not, is irrelevant. What is important is that these young adults are gaining an appreciation and a new perspective on what life is like living with a family member having a disability. They are learning by reading a first-person experience, rather than just getting the basics from a textbook approach.

When I first published my book, Isabelle Rapin, a well known neurologist, very knowledgeable about autism, wrote a wonderful review of Finding Marisa in The Journal for Autism and Developmental Disorders (2007) 37:2024-2025 issue.

She said, "I hope the professionals who take the time to read the book will recommend it widely to the parents of the children they care for because I believe it will be useful to parents and professionals alike."

I have helped Marisa, my daughter with autism, grow to be the best person she can be, while at the same time being happy with who she is. To me this is a most valuable accomplishment because, when one truly believes in oneself, there is a better chance that others will believe in them too. That being the case, I trust that with good supports in place, Marisa will be successful at whatever she chooses to do.

So when I received an e-mail from a student attending Keuka College, whose home is relatively close to ours, I was absolutely stunned! She and another student were requesting to come and meet Marisa. Marisa was so excited that she set out immediately planning the day. There would be an opportunity to share and play her Wii games, share the DVD copies of the shows she had main roles in (The Little Mermaid and Mary Poppins), prepare a dessert and perhaps play Uno and Scrabble, both favorites of hers. She also shared some picture albums and some of her favorite Facebook games. It was a magical day for Marisa! I have to say it had to have been the very first time she actually had two neurotypical girls over for a fun afternoon.

Was this a valuable experience for the students, Briana and Alex, both Sophomores at Keuka College, who spent a good 4 hours with Marisa?  I think it was. Although Marisa was able to take charge of numerous games, prepare and serve a dessert and share her picture albums, there is still one very important fact that clearly set her apart. Marisa's autism made it difficult for her to hold an extended conversation. The give and take and natural flow of ideas expressed openly to another, is one area that poses a great challenge to someone with autism, and though there are many things Marisa is able to do well, this is not one of them.

For Briana and Alex, who were happy to have the opportunity to share an afternoon with Marisa, there had to be an appreciation of what was truly present, and a growing awareness of what was clearly absent in her ability to openly converse. Just as there are challenges for someone who is blind or deaf, there are also immense challenges for those with autism. Clearly, the biggest challenge is the ability to process language and participate in the joys and ease of interactive conversation. One must appreciate that the ability to express one's thoughts and feelings, can lead to frustration and outbursts for those on the spectrum who are more severely impaired in language.

Was this a good experience for the students who took the time to visit? I believe it was, and not just for them. This was a hands-on experience at it's best ... for me, because I experienced the joy Marisa felt for having the opportunity to share her life with neurotypical peers; for Marisa ... for having the chance to do so; and for Briana and Alex ... who cared enough to take the time to reach out and connect with someone living with autism, a condition that still remains a puzzle to most of the neurotypical population. However, if more young people attempt to reach out and understand and accept those with autism, then there is hope for a better future, not just for the next generation of those on the spectrum, but for the rest of us who will be able to gain from the many talents this special group of people have to offer.

Learning to Deal With the Unexpected

The sun was shining brightly and it was the start of a new day. After she had gone through her usual morning routine of dressing and making her breakfast, Marisa was about to get ready to leave for school. Now she could be expected back in the kitchen to ask me to mute the TV news (she doesn't like listening to news in the morning), but something was clearly wrong by the tone in her voice.

"MOM! My shirt has a HOLE in it! Can you FIX it?" she cried out as if the world was going to come to an end any minute.

I knew this was going to be a big challenge for me. I quickly thought over my options. I didn't want to get her upset any more than necessary over what seemed like a major problem to her. Of course I would be annoyed if it was MY shirt ... one that was just bought under a month ago. If it had happened to me, I would simply return it with my receipt, but Marisa's shirt was actually a special one that she had purchased from a Miranda Cosgrove concert. That being the case, there was no way of returning it or exchanging it. I looked at the hole in the shirt ... smack in the middle of the chest and wondered how that could have happened. It made me angry to think it was a defect that had gone unnoticed.

"I can't fix it now but I will definitely fix it with a matching iron-on patch and even a rhinestone to cover the patch. After all, the hole happens to be just above the "D" in Miranda. It will add a nice sparkle to the shirt. Why don't you wear another shirt today?"

Marisa wasn't quite happy about that. She started to grit her teeth and get more upset. That's when I realized that she needed to hear the options.

"Okay, look! Here's the choices you have. You can wear the shirt with the hole today. It doesn't really show anyway, and I can fix it for the next time you wear it. Or, you could take it off and wear another shirt that doesn't have a hole. It's your choice. Either choice will be fine, but gritting your teeth and getting angry isn't going to solve the problem."

She stood there thinking it over and then said, "I'll change."

Off she went to find another shirt, and a few minutes later she appeared looking as together as usual.

"Hey, you're looking very pretty now," I said.

It's all about choices and making wise decisions. Marisa needed someone to help her navigate those choices, but once she made a decision she was back on track and ready to face the new day.

I sent a note to her teacher to let her know what had happened, just in case Marisa seemed upset about the change in her planned attire for the day. Later I was happy to receive a note back from the teacher that Marisa had not once referred to the hole in the shirt incident.

Now I know that Marisa has really matured! She was able to handle this disappointment and move on. There was a time when this would not have been the case. For example, she might have had a major tantrum that would have made her late catching her bus, or she might have gone to school and been upset all day, which would have been disruptive. She also might have refused to change into another shirt, which would have caused her to obsess over it all day.

The point is that although she was upset initially, she was able to think it through, make a wise decision and then move on with her day. I couldn't have handled that any better myself. Was I pleasantly surprised? Yes I was! Then I realized that with age comes wisdom, even for our special needs kids. This is something that all parents of children with autism or any disability should always remember. Maybe it comes at a slower rate, but we need to realize and have faith that wisdom does come with age, no matter how small an amount. And with the patience, nurturing and ever so gentle guidance we provide, every bit of wisdom our children gain, should be appreciated and acknowledged as a successful achievement in their quest to become fully functioning adults.

Bullying

Ben X is a 2007 film made in Belgium about a high school teen with high functioning autism who finds a unique way of dealing with the cruel bullying of his classmates. This film literally kept me glued to my seat, which frankly is unusual since I tend to fall asleep within the first 30 minutes of sitting down in front of most movies. 

The film brings to light the impact that bullying has on those who experience it. Watching repeated bullying incidents in the film is very painful, but what's amazing about this story is watching Ben find a way to enlighten those around him and not just find his way through a most difficult situation, but come to realize that it is okay to be the person he was born to be.

This film made me pause and think about our children in the mainstream setting. How difficult life must be for them not just having to deal with their school work but, because of their autism, the social struggle to fit in with their peers. Think of the anxiety that must be present for these students. For my own daughter this was not a concern, because she attended a school for special needs and was equal and happy among her peers.

But for mainstream educators the focus is on academics and encouraging their students to get the grades needed to go on to college. In so doing, very little is done to accommodate the social needs of those on the autism spectrum. Many schools offer counseling for students on the spectrum who need help navigating the social pressures around them, but what kind of counseling is required of neuro-typical kids when it comes to understanding those with autism?

In order to promote success among those on the spectrum, we need to educate the general population about what it means to have autism and how to be more understanding and accepting of this population. Those with autism must learn to get along in a neuro-typical world, but life would be better for everyone if the neuro-typical population were better informed and aware of the difficulties that people with autism are faced with on a daily basis. For example, police who are taught to recognize the difficulties of those living with autism are better prepared to handle a person with autism appropriately rather than having a misunderstood situation get out of hand and possibly end tragically.

So, should we be providing counseling to just those with autism, or should we be counseling all students as part of health education? Educating neuro-typical students about autism and it's difficulties could help ease the way for those that are in the mainstream today, and in so doing, help those that are out in the real world be treated fairly by the better educated population of tomorrow.