This is not the story of Peter's life. If it was it would have a more uplifting title, something filled with the love and tenderness of a mother who loves him unconditionally. This, instead, is the story of Peter's journey. One of many he will make in his lifetime. One that he did not chose or ask for and a burden that I believe is unfairly bestowed on my sweet, innocent boy.
Like all parents, I expected bumps along the road as I learned to parent Peter. He was my first, I started out as a single parent and he came with some baggage from birth. But even with all of those strikes against us I could never have imagined the rabbit hole of unexplainable twists and turns we would be thrown down and the complex strategies it would take to simply live our daily lives.
Peter was born Lorenzo Desmond, a name that it never occurred to me to keep. I wanted him to instantly belong to our family and so I named him after the most solidly grounded person I knew and the person I would most like him to have as a role model, my father. The name was genius. It connects Peter to my father in a way that nothing else could have. It is a most basic human need - to be named and called and Peter's name immediately signals to him and everyone else that he is loved and connected to one of the most important people in his life.
When Peter was three some red flags started going up. A cooperative kindergarten class recommended by every mom in town and touted as more than worthy of the 6 hour wait on application day kicked us out when Peter smacked the teacher in the face on orientation day. In fairness to him, he was thrust into a classroom of 30 screaming, squawking kids with a teacher he did not know and when he firmly stated that this was not going to work for him and was ignored he communicated (very effectively) in another way. I promptly accepted the form to withdraw him and let one of the 105 other children on the waiting list take his place and decided preschool was just not all that necessary at only 3 years old. But it was and my options for Peter were now limited by my fear of him hitting another teacher.
Peter had been enrolled in birth to three since birth and although they had never directly discussed the possibility that Peter had special needs they had pursued for me an acceptance into our town run special education preschool program. We got a date for testing and on that date after less than an hour of testing we were informed that Peter, indeed qualified for the program based on several areas of deficiency. He would be enrolled in the special education program which paired normal functioning children with peers with special needs in a classroom in the public school. I sobbed all the way home and for the next week I was inconsolable. Nothing about Peter seemed imperfect to me. I think on some level I knew that our lives had just taken a steep turn but on another level I looked into the deep brown eyes of my child and saw nothing but the brilliance of his unbridled potential. Peter's first day of preschool consisted of my loading him onto a bus with his Bob the Builder backpack and waving from the driveway. He was gone for 3 hours and I don't think I did much in those three hours but watch the clock. The teachers in Bright Beginnings ended up becoming trusted friends over the next three years. They fell in love with Peter, as happened with most people who gave him a chance, and they guided us through the rough terrain of special education and parent advocacy all while nurturing in me a newfound appreciation for the uniqueness of Peter's needs. I will forever be grateful to the teachers in that program for gently leading me onto a path that even as I filled out registration forms I think I believed was not the correct one for us. My learning curve was pretty steep when it came to my son but looking back I realize that they saw it all along. They knew that the services we needed at three would only grow and increase as Peter grew and they helped prepare me for the wars I would wage with bureaucracy and the battles I would fight within myself to rethink my own view of "normal".
In kindergarten we made the difficult decision to leave our school district and move to a magnet school. The decision was not one we took lightly but we were raising an interracial family in a public school system where there were only 3% minorities. Magnet schools had also proven adept at securing funding for special education, usually had smaller classroom sizes and were praised for unique programming that addressed families who might be less traditional, as ours was. For several years Peter, and all of our children, flourished at the magnet school. There were minor bumps in the road that took shape in the form of a teacher who was unexpectedly reassigned and had a personality difference with Bob and I that prohibited effective communication. There were incidents that pointed to Peter's diagnosis of PDD (Pervasive Development Disorder) becoming more severe and creating a less positive learning situation for him but all in all the experience was a great one. And then he hit puberty.
Peter was hospitalized for the first time when he was in 6th grade. At this point he was still the picture of responsibility and academic success in school but was beginning to show signs of unraveling at home. Support from the school was minimal because they just couldn't understand what we were talking about. The child they saw at school was kind, courteous and respectful. The child we saw at home was aggressive, angry and impulsive, at times unable to control his violent tendencies toward his siblings and parents. When Peter was hospitalized and then transitioned to a partial hospitalization program the school questioned us. They felt that we may be overdramatizing Peter's issues. Psychiatrists told us that it was normal for Peter to keep it together for 7 hours at school and then come undone at home where he was safe and uncomfortable and they gave us medications to try, reward charts to encourage and exactly 10 minutes once a month to tell them everything they needed to know to make adjustments to these strategies of success.
At this time we were lucky enough to find a therapist who we worked well with and began seeing him once a week. Sometimes the sessions were parent driven with Bob or I explaining what we felt were the issues of the week and other weeks Peter took the entire hour for himself and worked with Sean on his own issues. Bob and I could always tell when they had touched on a sensitive subject because Peter would spend the next day twisted into knots. Several times Sean was forced to call the police and have Peter transferred to the ER based on things he had discussed with him in therapy. Most often these were threats he made about hurting himself or hurting others. Sean began making weekly stops at our house to try to engage Peter in our home where the real crux of our problems seemed to lay but without the boundaries and confines of the office Peter seemed to struggle with respecting the time as therapy time and we went back to office visits. Sean is the one person who has been close enough to Peter to actually watch the transformation from slightly aggressive boy with some issues to a violent young man with untended psychiatric and developmental issues from the inside. He has seen Peter become the center of our family even when it was not in anyone's best interest to let him be that.
And now here we are today. We have Peter enrolled in a school for kids with autism, we see a therapist once week, a psychiatrist once a month, in-home behavioral health services twice a week, in home family services once a month, DCF voluntary services pending, a probation officer and active juvenile court involvement and we still can't provide a safe and loving home for our other four children. We still call the police several times a week, we still get reported to DCF on a regular basis for neglect of our other children, we still cry in each other's arms at night hoping for the one thing that will set our son free - the one medication that will help, the one strategy that we haven't tried yet, the one diet fad that will turn things around for us. We pray each and every day that the joy filled little boy who smiled and bounced and loved life will return in some form. We pray that Peter will stop seeing himself as a burden and find the right combination of will power, medical intervention and coping skills to be the young man that we know is inside of him. We pray that the broken system of mental health care in Connecticut will be recognized for what it is - a drain on our communities and a misuse of resources and that some courageous legislator will help us fix it. But mostly we pray for hope. We pray that each and everyday we awaken with the courage to fight another day for our son. We pray that in our pursuit of the best life possible for our son we might also find the balance our family needs to be healthy and strong together.
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