Stories From the Heart: Angel on Earth

Our first child, Matthew, was a much anticipated and planned-for child.  We had diligently finished college, established our careers and delayed parenthood until we could comfortably afford it and until I could stay home and be a full-time mother.  So much for planning for the perfect situation!

Matthew was a cute, but difficult baby from day one. He had sucking problems, followed by vomiting problems, followed by fussiness, and on and on.  At one point, my husband wondered aloud if I was even “mother challenged” as I was overwhelmed and in tears at times. Because Matthew had to be held upright for 30 minutes after each feeding to reduce his chances of vomiting up an entire feeding and because he wanted to eat every two hours into toddler age, it felt as if I was always feeding, holding him or changing him.  My husband was frustrated that I was frustrated.

Matthew became a patient at Children’s Hospital as an infant but it was not until he was five years old that he was diagnosed as having Asperger’s Syndrome, which is lumped under “Autism Spectrum Disorder”.

At age five, Matthew was still vomiting daily, slept very little, had no fear and was obsessed with Halloween and all things spooky.  We were not prepared for a diagnosis of Autism and grieved deeply for our sweet little boy.  We had delayed parenthood so that we could give our child every opportunity and it pained our hearts that Matthew would not have the full, complete life as we had imagined it.  We could see how much he had suffered (who wants to vomit repeatedly every day?) and were brokenhearted as we read everything we could get our hands on about the disorder.

That was eight years ago.  Today, Matthew is fourteen years old.  He has a delightful and unique sense of humor and is always cracking us up.  He makes me stop and consider a new way of looking at things every day with his comments.  He truly sees things that a typical person never considers.  He has taught us the beauty of asymmetry. The insights he has given us have made us both better persons.  Our hearts and minds have been expanded by being with Matthew.  We are more open-minded, tolerant, and at peace than before Matthew. We have changed our opinions of what we choose to get upset over.  More situations seem like “small stuff” than before Matthew.

We would never maintain that watching Matthew struggle is easy for either of us.  On our bad days, we still catch ourselves grieving for Matthew.  He struggles with directions, self-care, feeling confused and overwhelmed with the world of “Typicals”.  He requires specialized education and has been attending after-school social skills instruction for eight years.  He works very hard at things that come easily to typical people and always will. But, it warms our heart to see how far he has come.  He is growing into a kind, thoughtful, honest man.  He has a gentleness and pureness about him that inspires us to be more like him.  He truly seems untainted by the world around us and cannot understand why people do bad things.  He seems like an angel on earth.

The name “angel” means “Gift from God”.  We knew exactly what name we wanted for our boy when I was five months pregnant.  It took much longer to realize how perfect the name was for our son.  We truly believe he is a gift and he has given us more than we can every hope to give him.

By Anonymous

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

Stories From the Heart: Irish Eyes

As an undergraduate student, I was majoring in Physical Therapy. I had chosen to pursue a career in Physical Therapy in high school, and had never really questioned the decision. During my senior year, I had the opportunity to volunteer at a BOCES in Ithaca, New York. I was focusing on pediatrics, and felt this would be good practice. I had no idea it would be a life altering experience.

I was placed in a classroom of children with severe and multiple disabilities ranging from autism to cystic fibrosis. Many of the students were unable to speak or walk. This was a very different type of environment for me. However, I began to look forward to the afternoons I would spend in the BOCES classroom between my own classes at Ithaca College. The classroom teacher involved his students in activities I never would have thought possible. The class went bowling, took part in scavenger hunts, cooked meals, and danced at school concerts. The time I was spending with the students was opening my eyes to the endless ways in which children who had seemed unable to do many of the things I took for granted, could take part in the community and enjoy the same activities I enjoyed.

While all of my experiences in that classroom touched me, there was one day and one child who changed the path of my life forever. That afternoon, Jay, a child with cerebral palsy who used a wheelchair and had no verbal language, needed help getting his coat on to go home. As I leaned over his wheelchair and buttoned up his winter coat, one of my curls plopped forward in front of Jay’s face. I felt a little tug on my hair and looked up to see Jay bouncing the curl, laughing, and staring right into my eyes. His green eyes were sparkling. I rubbed his hair and joked around with him while he laughed and continued to gaze at me. At that moment, something changed inside of me. This child was making an effort to communicate and interact with me. That is when I realized the difference I was making in the lives of those children. I wanted to continue to make that difference.

A few months later, I decided not to continue in the field of Physical Therapy. The next fall I began working towards a Master’s degree in Special Education. Today I am teaching children with Autism and experiencing moments such as that each day. Every time one of my students makes a connection with me, comes over to give me a hug, jokes around with me, masters a skill, makes progress in his behavior, or just smiles at me, I know that I made the right decision. I have never once regretted volunteering at BOCES or changing the direction of my professional life.

I will always remember Jay. I am thankful that he came into my life at that time and was able to have such an impact on me and the lives of all of the children I will touch throughout my teaching career.

By Anonymous

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

Stories From the Heart: That’s How Micheal Spells His Name

Micheal was angry, and yes, that’s how Micheal spells his name.  He says his mother made a mistake when she gave his name to the doctor.  He claims his mother isn’t very smart.  When Micheal tells us this, he goes on to say that that is why he isn’t very smart either.  Micheal has a number of diagnoses’ including a severe brain impairment, attention deficit hyperactivity disorder, oppositional defiant disorder, a learning disability and a couple of others they haven’t quite been able to put their finger on yet.

I met Micheal at his group home.  I was called in to help the staff get him under control as he was “angry.”  Apparently, Micheal did a lot of damage when he was angry.  There were holes in the walls, broken doors, and shattered glass when I first started to visit Micheal.  I asked him why he was so angry and he said “Because no one ever listens to me!”  I asked him what he had been saying that they didn’t want to hear, and he claimed that all he wanted was to be able to walk in his community alone and get a paying job.  It didn’t seem like too much to ask to me.

Upon investigation, I learned that Micheal had never been granted independent community time because his social worker and staff all agreed that he was not capable of being alone unsupervised.  I did some assessments and decided to test Micheal in his neighborhood.  We went out together to walk my dog.  I was unfamiliar with Micheal’s neighborhood and found myself disoriented on many occasions. Micheal was my saving grace. No matter which way we turned, he was able to bring us back home.  In fact, we got lost three times; all in different directions, and, Micheal brought us back each and every time!  I was amazed at his ability and began to question whether I should be out alone, if they said he wasn’t capable.

I wrote a letter to his social worker, met with his staff and began to beg for Micheal to have a chance at being human.  Finally, it was granted and Micheal began his community independence – 10 minutes at a time with a staff shadow for safety.  He excelled and within one month he was working at a local McDonald’s, responsible to get there and back by himself and successfully completing 6 hour shifts.   Micheal was ecstatic and lo and behold, all the violence stopped.

He volunteered with a local organization where he bathed a llama and took him to the park to meet and greet.  Micheal was amazing with the public.  I have never before seen anyone so comfortable with others. He was completely in his element.  I was present for this event and was suppose to be chatting up the public but I couldn’t bring myself to do it.  I didn’t have to because I had Micheal!

To date, Micheal still volunteers for his local organization and is currently looking for alternate employment as it has come to his attention that he is not very good at multitasking.  When he received this news, Micheal shrugged and said “Oh well, onto bigger and better.”  I would have been crushed personally.

Micheal has shown me a spirit, will and determination I could only wish to posses.  He continues to succeed despite others treating him as less than equal and assuming he “can’t” just because he is disabled.  When given the chance, he steps up to the plate every time. On more than one occasion, Micheal has shown me the softer way to deal with people or problems.  He has and always will be an inspiration to me.

By Anonymous

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

Stories From the Heart: Camp Orkila

“Can I go upstairs, Mom?” Kevin asked, dropping his book on the table while he danced and twitched in the aisle, his eyes darting around the ferryboat. “Sure.  I’ll wait here,” I replied.  I could tell Kevin was nervous about this school outing to Orcas Island, but excited as well.  The rest of the 6th grade students were seated on the other side of the boat, talking together and eating their sack lunches.  For them, this was just the first day of a four day trip to Camp Orkila.  For Kevin, it was most likely a day trip, a chance to see the camp and determine if he could get past his fear of staying there with the other kids.

His clothes and sleeping bag were packed in the car just in case, but I didn’t expect that he’d decide to stay.  His psychologist and teachers agreed with me that taking this trip, would be good for him, however, and it would help him work through his fears.  Maybe I should have insisted that he participate, rather than giving him the choice, but it’s just so hard to know with Kevin.

Bounding back over to the table, a bewildered look on his face, Kevin breathlessly exclaimed, “Mom!  A girl is sitting next to Greg with her head on his shoulder!”  Greg was Kevin’s greatest enemy and best friend all rolled into one.

Suppressing a smirk, I decided this was one of those learning opportunities of which parents are expected to take advantage whenever possible.  “Well, Kevin,” I said in my best June Cleaver manner, “I would assume that it means she likes him”.

“Greg?!”  He asked incredulously, “How could she like Greg?”

“She must see something in him that you don’t see.” I replied. “But she’s really pretty!” he said. Struggling now to keep from laughing, I continued, “Kevin, there is someone for everyone.” Quietly processing that information for a moment, his head cocked to one side, and his brow furrowed, Kevin suddenly smiled and said confidently, “If Greg can get a lady, then so can I!”

The day was looking more positive than I expected.  Kevin was in a good mood, he was interacting with some of the other students, something at which he usually fails miserably.

The sun was beginning to shine more brightly the closer we got to Orcas Island.  Maybe I had made the right decision bringing him up here after all. Pulling into the dock on the island, I asked Kevin for about the hundredth time, “So, do you think you might want to stay at the camp?”  And, for about the hundredth time, he answered, “I don’t think so.”

After a couple of turns on the wrong roads, we finally arrived at Camp Orkila, parked next to a teacher’s car we recognized, then started down the path to the main lodge.  As we stepped out of the woods and into a clearing, several buildings and the beach came into view.  Kevin stopped suddenly, his eyes got wide, his face brightened into a broad smile, and all my talkative son could manage to say was, “Wow!”

The two of us took an unescorted tour around the camp, through a couple of cabins, and down to the beach, Kevin asking me questions such as, “Will I be able to read in bed?” and “What will they have to eat here?”  Apparently satisfied with my answers and what he was seeing, Kevin then asked, “Did you bring my sleeping bag”? “Yes, it’s in the car,” I replied. “Great!” Kevin said, jumping up and down delightedly, “I want to stay!”

Bursting with pride at him getting over his fear, I took him with me to find the teacher with the clipboard, the person who could assign him to a cabin.  We found her at the main lodge, where the kids were all seated cross-legged on the floor, listening to a talk on the rules and procedures.  I signaled to Kevin to sit down with the other kids as I tapped the teacher on the shoulder and beckoned for her to step outside the door with me to talk.

“Hi,” I said, “I’m Kevin Syltebo’s mom. His teachers told me that we could come up here today and he could decide if he wanted to stay or not.  He just told me that he does want to stay, so what do I need to do to get him into a cabin?”

Gripping her clipboard more tightly and talking in clipped tones, she replied, “I know that they told you that, but he can’t stay.  I don’t have a place for him.”

Unbelievable!  I drove all the way up there, against all odds Kevin decided that he did want to stay, and I was being told that he couldn’t.  I got Kevin out of the lodge and shared the bad news with him, saying, “Kevin, I’m so sorry.  It turns out that they don’t have room for you in any of the cabins, so you can’t stay after all.”

Fighting back tears, Kevin turned from me and stomped off angrily as I shot an accusing look back at the stoic teacher who was breaking my child’s heart.  “I’ll never be happy again!” Kevin shouted at me over his shoulder, overcome with emotion.  The overly dramatic statement might have been funny under different circumstances, but at that moment, I felt exactly as he did.  Tears were burning my eyes as I followed him back to the car, trying to think through what I was going to say to him.

As we drove silently out of the camp, I looked at the clock and realized that we had three hours to kill before catching the return ferry to Anacortes.  I didn’t want to spend all of that time parked in line, so asked, “Kevin, why don’t we drive into Eastsound and see if we can find a bookstore?”  I knew that there was a good chance I could buy him out of his dark mood with at least one great book.

“Bookstore?” Kevin asked from the backseat, looking up for the first time since leaving the camp. I grinned, feeling smug at how well I knew my son. Nothing cheered Kevin up like a trip to a bookstore. After buying five new books at the quaint store we found, Kevin was his old cheerful self again, jabbering about the two of us taking a trip back to Orcas Island in the summer.  “We’ll stay in a hotel,” he said, “not a camp”. “Good idea,” I replied.

“You know, Mom?” he said, “I liked Camp Orkila in the daytime, but tonight, when it gets dark and cold, I probably wouldn’t have liked it anymore, when I couldn’t read in bed”. “You’re right, Kevin,” I said, smiling into the rear view mirror at him.  “I want you to know how proud I am of you, even though it didn’t work out today, that you went up there and decided that you were brave enough to stay”. “Thanks, Mom!”, he said happily going back to reading his new books, proud of his accomplishment and glad to be heading home to his own bed.


By Danna Syltebo


* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

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