I am a mother of 3 children in the Autism Spectrum, Nate, Brian and Stephan.  We originally lived in the Rochester, NY area when our children were born but soon my husband Mark was transferred in October of 1994 to the Syracuse, NY area. At the time our children were 3, 2 & 1 years of age. My middle son, Brian went to his annual checkup here in Rochester prior to our moving and at that time our pediatrician voiced her concerns over the lack of speech that he had. She wanted to refer him to a Communication Disorder Unit for evaluation but since we were moving she told me to schedule one immediately upon our arrival to Syracuse. After we were settled I spoke with our new pediatrician who referred us to the SUNY Communications Disorder Unit in Syracuse. They evaluated him for a little over an hour, then the woman came out and looked me in the eye and said “Mrs. Phillips, your son should be institutionalized. He will never speak and will always be this way. Since you have two other children at home it may be best to handle this now while he is young.” I remember being in a stunned silence on the way home. Unable to process or accept this information handed to me so casually. I called the Central Square School District for second opinion and that is when I began the odyssey of Special Education.

My son Nate was in preschool at the time of Brian’s evaluation by the school district. But Stephan, who is my youngest, came with us that day. As soon as Brian’s evaluation began, they halted it immediately and said that Stephan needed to come and be evaluated as well since they observed a severe deficit. They sent me out of the room to call and set up an appointment right there. I was shocked. Sure Stephan was quiet, he loved to play by himself, but he was a happy little boy and I didn’t see what they saw, or perhaps I didn’t want to.

Both boys were identified as children with a disability for preschool services. My husband Mark and I sat in the dull roar of the CPSE meeting. I remember all the recommendations, OT, PT, Speech, 1-1 aides. We had NO clue what they were talking about and in some stunned “deer caught in the headlights” look we sat nodding our heads and signing papers. Signing our children away to strangers who could help where we couldn’t. Every parent prepares for the day that his or her child goes off to Kindergarten. It is the milestone of life that we have all looked forward to. But no one prepares you for the wrenching feeling as you send your baby in diapers on a bus, with an emotionless face, with the questions behind them all too clear, but you haven’t the answers for them. Stephan was placed in a 12-1-4 setting in another city north of us while Brian was placed in a 12-1-1 setting in town. It was Brian who was the first to show the fruitfulness of the structure and services he received. Stephan struggled for 6 months as they just tried to have him follow schedules, therapies and tolerate simple touch. It was perhaps the most difficult time for him and for myself. I still had a blanket over my vision, the proverbial wool over my eyes. Not wanting to accept that something more was wrong here. In 1996 Mark saw a news segment on Autism and came to me and said, “I think I just saw Stephan”. I went to his teacher and said to her that we thought that Stephan had Autism. She said, “let me set up the appointment and go with you”. And on a warm spring day Stephan, Mary his teacher and myself went and heard the words “Mrs. Phillips, your son is a nonverbal Autistic”. And I felt, an overwhelming sense of relief. Happiness for finally having a word to put with my son. I did not realize the lifelong impact of that statement. At that point I just felt a sense of pressure released. NOW we could move forward, move up and above this so that he could find his place in the world. During this time, Brian’s educational progress was on track, however concerns were rising over his emotional stability. He had increasing headaches and we had MRI’s preformed on him but there were no conclusions. His emotional turmoil continued to be his biggest roadblock as he wound his way through the academic system.

Nate was doing wonderfully at this time. Never receiving any special services he continued through the regular educational system. We knew we’d never have to worry about him. He was a sensitive soul and quite shy but flourished academically. Nate had few friends and always found solitude to be his choice. And although Brian and Stephan had been nonverbal early on, Nate never had those issues developmentally. There was a false sense of security with Nate that gave me hope to feel that at least one child would not need as much to get by. I had devoted all my energies into helping Brian and Stephan find their way, especially Stephan. Once he left the safety of preschool BOCES we found resistance from regular ed. teachers not wanting to handle a child such as Stephan in their classes as we tried inclusion for him this was the first of many walls we hit. It was painful for me to experience such ignorance and now I realized that no one was going to love my child like I did. I had quit working when the boys were born and planned to go back once they were in school, but now I was needed at home, to be there for them, volunteer at the school, being a parent rep. for the Committee on Special Ed. and being their advocate. During the summer of 1998 I was notified of a study for siblings of Autistic’s at the University of Rochester. We signed up, feeling it would help out Stephan in the long run. It was then that We were given the news that indeed we had a false sense of security with Nate. Both Nate and Brian were diagnosed as being in the Autism Spectrum along with Stephan. It is very difficult for parents to resign themselves to certain facts of information and this was a virtual blow to our systems.

However, we did spring into action asking the district for the recommended help that they needed. The district balked and then insisted that Stephan be removed from BOCES into a much lesser qualified room that was district run. The Superintendent of the district called me at home and told me that our family cost them too much money to provide all the services required and that moving Stephan would save the district quite a chunk of money. We sued them, fighting to keep Stephan where he was thriving. In the end we did win. But I knew that winning the battle was not the same as winning the war. We needed to come home to Monroe County to get the services that our children needed and required. We transferred recently from our home in NY to NC where the transition seems to prove more difficult for my husband and I than the boys. They are resiliant.

When we returned back home Nate received a hefty amount of services. Lap tops, test modifications, resource help and is now in his first year with no 1-1 aide; the school is monitoring this closely. He had been more successful with the support he needed in place. He wound his way through Middle School. Learning of all the pitfalls that this entails for a young boy. He’s learned the word enemies, which was particularly difficult for me. He is now a junior in high school becoming more and more adult like every day. It’s good for him. He keeps his grades up, and looks ahead at the dream of someday driving, even though he has his permit now he isn't comfortable driving yet. Nate is now focused on becoming and aerospace engineer. He is becoming more realistic in his goals and some of his dreams are being placed aside. It is a bittersweet realization. He is growing and changing and becoming cynical, as only his teenaged mind can be. He has lost the trusting ways of his elementary years and has his guard up more so now. And girls, are still far away…as Nate says it, Mom, they’re just gross and mean! He was inducted into the National Society of High School scholars this year and is taking 1 college course! Next year he will be going to college part time.

Brian as well received services. Since our move he has flourished in a larger class setting and is getting great grades and has dreams of the future for the first time in his life.  He has so far done everything right and so we are trying to make preparations to get him to where he wants to be.  Due to his Auditory Processing issues and his Language Impairments he needs constant support in and out of class. Diagnosed now with BiPolar, Clinical Depression, Oppositional Defiant Disorder and an Anxiety disorder, (on top of the Autism), Brian has been placed on a wide range of medications. He has put himself in dangerous situations in the past due to this. It was only 3 years ago that he ran away from home. The police picked him up after a concerned motorist called it in; he had made it to the expressway. Brian also spent part of a summer at Hillside Children’s Center in a crisis bed. Brian is impulsive, with his actions and words. His Autism only makes his reactions more magnified due to social miscues. Two weeks before Christmas last year, he had a breakdown and was hospitalized here at Strong in the Pediatric Psych Ward for two weeks before Christmas. It is a never-ending challenge with Brian. After our move here he had a behavioral hiccup at school but his reaction was to run, which he did. The police found him 6 miles out of town. Brian later acknowledged that he didn't know what to do and panicked. We still try to explain to him that no matter how far he runs, his problems will follow and that it is best to face them head on and get past them. He continues to make strides but we are always aware he can relapse at any time.

Stephan settled into his class during his elementary years but we had a bumpy start. The teacher wasn’t sure whether he was rightly placed in a 12-1-1 setting. The music teacher said if he couldn’t stop being busy in class, then he’d have to leave. I needed to fight to keep him in place, and he flourished.. He took tests with the rest of the class. His music teacher ended up offering private lessons so he could get into band. He can read music. He went on field trips and mainstreamed to his comfort level in all areas. It was his first year with letter grades. He received A’s and B’s on his report card, it’s more than what we could have hoped for. During his graduation from Elementary school he stood up and spoke with a microphone to the audience. He was the only child they all applauded for and it was yet another testament to Stephan’s ability to change hearts and minds in his life. Stephan’s Annual Review went without a hitch and he started Middle School in 2005 in Webster. He was placed in a BOCES 12-1-4 class. Stephan had many difficulties. The demands placed on him are more challenging. He asked constantly to go back to elementary school. He ran away from school, and threw tantrums, which he didn’t do before. Also the music teacher did not want Stephan in his class due to his verbalizations during class last year. So his teacher contacted the principal and they are tried to iron this out internally. In the end Stephan was removed from music class but returned with a new teacher and sang in chorus with a teacher who is uninhibited by Stephan’s uniqueness!  Since the move Stephan developed grand mal seizures. The doctors both in NY and here in NC acknowledge that 25% of all kids with Autism have seizures either before the age of 2 or during puberty, which is where Stephan is at. It doesn't make it any easier for us to witness this happening to our son. But he is now on anti-seizure medication that seems to be helping him. The teachers in his class feel that Stephan is quite advanced for his age and no one questions the fact that Stephan has a brain and that it is working albeit not the way others do, but there is something going on up there! He has adjusted to being in a different State as well as school and having different teachers. The plus for Stephan is we are closer to Orlando and he can see Kennedy Space Center more often. Since he is and always has been obsessed with space!

My husband Mark and I are celebrating our 22nd anniversary this year and have endured the stress that only Autism can bring to a marriage.

It is a never-ending journey as we wind our way through the educational system. All three boys are now fully into puberty now, which has it’s own challenges as they try to navigate through physical, emotional and chemical changes that are happening to them. As times progress on for my children it's changes like these that will be mixed with challenges and success. We move onward and upward but there are real mountains to climb and it is never really over. In having a child with a disability, there are constant worries and there are always concerns. We head down a road less traveled and for all the disappointments and challenges we’ve had, there are also successes and triumphs as well. The only thing we can predict is that life is usually unpredictable!