The Shawnie Story

The Shawnie Story

By Michael Novia

Having a child with a severe learning disability is difficult for everyone involved. And when the School Department and public officials won’t listen, it makes the problem that much worse. In our case, it took thirteen years for our Autistic son Shawn to receive the proper placement he needed to live his best life and to live without fear of violence. Over that time, our family experienced much heartbreak, and endless sleepless nights fearing that we could not keep our son and the people around him safe.

Please take a few minutes to read Shawnie’s story. This encapsulation of events is a proverbial tip of the iceberg, but it provides a peek into what so many families like ours have to endure for years and years. It does not need to be this way. Bill HD.358, which Representative Steven Howitt is supporting, will take years off this timeline. It is understood that having a child with autism is difficult and the road is often bumpy, but we need a true partnership with our state and local government to work through the process, and Bill HD.358 will help families do just that.

The Beginning…

North School, 2004 to 2006 – 3/4 years old – Shawnie’s journey began in public pre-school at North School in Seekonk, MA in September 2004. At just four years old, he was exhibiting concerning behaviors but was small enough that we could control him.

Martin School 2006 to 2007 – 5/6 years old – The following year, Shawnie moved up a grade and began attending the Martin School in Seekonk. Prior to his enrollment, Shawnie had been hospitalized for eating a light bulb, tacks, and nails, and was also becoming more violent at home. We met with school administrators and discussed Shawnie’s actions to be sure staff, other school children, and Shawnie would all be safe. The school administrators felt the environment they could provide would be suitable, that did not turn out to be the case. They dismissed him from the school in October 2007, after a series of alarming behaviors including the destruction of property, urinating in the classroom, and assaulting staff. The day he smeared feces on the wall was Shawnie’s last day.

During the one and a half years Shawnie was at Martin School, he was in and out of the hospital. Shawnie was growing up, and it was obvious that he would require admittance into a residential home where he could receive proper medical attention and education. For Shawnie to live a fulfilled life without the threat of violence towards himself or others, he needed to be in a facility with trained staff, not a public school setting.

South Coast Collaborative School and Bradley Hospitalizations, 2007 to 2009 – 6/8 years old – After several meetings with the School Department and against our advice school administrators enrolled Shawn in the South Coast Collaborative school, which is a school for children with low incidence disabilities – let that sink in for a second. So we met with Administrators at the school and they assured us they had seen it all.

On the very first day at his new school Shawnie was self-injurious, a threat to others, destroyed property, would not follow directions or do any schoolwork. The school contacted us and stated that because of his severe behaviors; we needed to be available during school hours in case he needed to be picked up, which of course happened all the time. My wife, who is a medical technologist, would only be available some time, so my father-in-law would assist me in picking him up. The staff would stick him in a sleeping bag in order to keep himself and everyone else safe and carry him out to the car.

Bradley Hospital

Bradley Hospital Outpatient School and Hospitalizations 2009 to 2012 – 8/11 years old – For the next three years, depending on his behavior, he would either attend the outpatient school or was admitted into the hospital. All the while we were trying to raise our other two children. Shawnie, when not hospitalized, was still living at home. In 2010, we received only 6 months of approval of home-based services. Insurance would not cover the cost after 6 months.

2011, Tuesday, November 29 – After not making any progress with the School Department and Shawnie in and out of the hospital and still living at home, we resorted to contacting our local State Representative Steven Howitt. He was concerned enough about our situation that he attended the next Individual Education Plan meeting with the School. After reviewing our situation, and taking into consideration that a Social Worker at Bradley recommended residential placement, Representative Howitt demanded that the school department include 24/7 residential support into Shawnie’s Individual Education Plan. The School department complied with our State Representative’s demand during that meeting.

bradley-hospital

My wife and I began searching for residential placements. The Doctor from Bradley recommended that Shawnie be placed in a setting with a low staff to ratio mix, because, let’s face it, Shawnie was very difficult to deal with. Also, he does not travel well – gets anxious in the car – and besides autism, has a serious medical condition. So we set out to find a facility as close to the house as possible.

On December 7, 2011, we met with the Amego Residential Program. We were excited. This was the first time in our long and difficult journey that we had the chance to admit Shawnie into a residential program where he could grow up and be safe. They had reviewed his file and stated that they would accept him into the program. We were beyond happy. It seemed like an appropriate solution. Amego was only fifteen minutes away from us and met our criteria. But the school department denied Shawnie this placement and stated that since they would fund it, they would have the final say.

The school department had us looking at other residential placements. All denied Shawnie because of his severe behaviors.

The Next Chapter…

Cardinal Cushing Center

Cardinal Cushing Center, February 2012 to July 2016 – 11/15 years old – The School department informed us that Shawnie had been accepted into the Cardinal Cushing Center. This facility is ninety-plus minutes away in traffic and we immediately had concerns that they could keep Shawn safe. The villas where residents stay are close to Rt. 53. This was a significant cause of concern for us because Shawnie was an eloper. The administrators assured us that staff was trained and could keep our son safe. Their intake and clinical team observed Shawnie at Bradley Hospital on February 1, 2012. After this observation, the Cardinal Cushing Center officially accepted Shawnie into their program. I once again asked about their ability to keep Shawnie safe, and once again I was reassured that they could do so. We felt a bit of relief. Shawnie would be out of the hospital!

On February 6, 2012, we took Shawnie straight from the hospital to the Cardinal Cushing Admission Center. Part of their behavioral strategy is to medicate a child to manage their behavior. We did not support this, but what choice did we have?

Cardinal Cushing Center

All seemed good for a while. We did not receive any incident reports. Shawnie seemed to do okay. He had to go through an adjustment period, then July rolled around. On July 31, we received a call – Assaulted StaffDestruction of Property. Location: Outside. “Shawnie began kicking a staff’s car upon returning to his villa from school. A female staff member reminded Shawnie that kicking the car was property destruction. He called her a “f**king bitch” and began running towards her. She put her hands up in a safety stance and began walking backward as Shawnie was approaching her. Shawnie grabbed a hold of her left hand, squeezed it tight, and wrung it. Staff intervened so she could get away, as she was doing so Shawnie was still chasing her. She got down a hill and away from Shawnie. They sent her to a nearby walk-in clinic. Shawnie had broken her left ring finger. Many similar incidents and hospital stays followed. We later discovered that there were incidents early on not reported to us.

The traveling time to take Shawnie home occasionally proved difficult. He is not great in the car and needs to adhere to a schedule. One time we got stuck in traffic and he became very upset and violent. He punched me in the face, pulled the headrest out, and tried to stab me with it, then opened the car door and jumped out while the car was idling and began running down the side of the freeway. I had to chase and tackle him and find a way to get him back to the car. I was bloodied and in pain. I got him back in and used measures to restrain him until we could get to the center – only 45 more minutes to go!

The clinicians at CCC kept adjusting Shawnie’s medications to the point where he could not function normally. This also caused hand trembling and the inability of Shawnie not able to sit up straight.

The multiple hospitalizations, elopements, assaulting staff, property destructions, the need for ongoing police support continued until July 1, 2016, when Shawnie was hospitalized at Fuller. The Cardinal Cushing Center admitted that they could not keep Shawnie safe and discharged him from their program.

Fuller Hospital, June 28, 2016, to Sept 9, 2016 – 15 years old – Because of Cardinal Cushing Center discharging Shawnie without following the proper protocol, we were in a troublesome situation. As Shawnie remained hospitalized, he was heavily medicated; at times he was barely able to speak. My wife and I needed to get him out of the hospital. He was not receiving proper treatment or education.

The Groden Center, Inc.

Groden Center *RITE* program, Sept 7, 2016, to October 3, 2016 – 15 years old – This program had a low number of adolescents, a high ratio of staff, and was according to the Groden Center a very structured program with its own timeout room. They would observe patient behaviors for a period and then make an admittance recommendation.

Shawnie spent less than a month in the RITE Program. On October 3, 2016, staff recommended admittance into their Farnum Pike Group Home, which offered a less structured environment than the RITE Program. But on this day, four staff members restrained Shawnie for unsafe behaviors, yet they still discharged him. Keep in mind during his twenty-six-day stay he had 7 verbal threats to harm himself, 69 self-injurious behaviors, 67 aggressive behaviors.

The Groden Center

Groden Center Farnum Pike Group Home, October 3, 2016, to January 19, 2017 – 15/16 years old – Once again, we have no choice but to go along with their recommendation. We felt powerless against the system and the ability to keep our child safe. Shawnie was still bouncing from one facility to the next and in and out of the hospital. At this time our choices were very limited. Programs would not accept him due to his severe behaviors. We are over a decade into this and are exhausted.

It wasn’t long before the incident reports started again – email dated October 14, 2016, “Groden Center’s Nurse regarding her safety concerns for Shawnie, his peers and staff. “The floor staff do not have the proper training to deal with such a situation. As you all know, I am extremely concerned with him (Shawnie) being at the residence with the six other children. The individuals who were present during the van transport on Friday 10/7/2016 have to be taken into consideration as well. Their well-being and the right to feel safe in their homes need to be considered. I do not believe a 1:1 is sufficient for someone making such threats, especially someone with his cardiac history, size, and intelligence. I understand that “he has made SI (self-injury) & HI (homicidal) threats in the past and has never actually followed through on them”, “so people seem to be comfortable with this, but all it takes is one time and one action to turn the “empty” threat into something viable and subsequently pose an extremely dangerous risk to himself, the staff and the other residents. Any commotion in the house can present the perfect opportunity for accidents to happen, and we need to be aware of the worst-case scenario and how to respond. I hope during this meeting we can collectively develop a plan, but without such a plan in place I do not think it would be appropriate to proceed (continue residential placement at Groden Center).”

GRODEN CENTER INCIDENT REPORT
“6:30 am. Shawnie is having a tantrum in his bedroom. The severity of this is a 5 (severe) and the duration of the behaviors lasted 3.5 Hours. Shawnie was yelling, hitting his wall, bed, and dresser. He was also threatening staff and himself The report reads: Shawnie started kicking and hitting his wall and bed. Staff entered his room and asked him to relax and go back to bed. Shawnie started yelling, threatening, and hitting his wall. He began to kick the dresser and rolled to the floor. Once on the floor, these behaviors continued. 8:00 am. Shawnie’s escalation and unsafe behaviors continue. The report indicates that for 2.0 hours, the severity level of his behaviors continued. Blank stare, swearing, non-compliance, grunting. Shawnie was able to get in the minibus, all alone. This is the bus that transports him and his peers to school. He was able to lock staff out of the bus. Staff redirected Shawnie and attempted to encourage Shawnie to come back into the house. Shawnie went from the back of the bus to the driver’s seat. At some point, Shawnie was able to smash out one of the windows. While in the driver’s seat he began pressing the horn, pushing all the buttons, and pulling on all the cords and wires. He was also pulling on the emergency brake and pulling on the shifter. Shawnie then started throwing out items through the glass window that he broke. He then continuously started to open and slam the passenger door repeatedly. He then got into the van’s contents, destroying everything. He got into the biohazard/spill clean-up kit, opened up every package, and getting these poisonous chemicals, which included bleach, all over his hands and eating them. Shawnie was then putting his hands in his mouth. He then proceeded to put the red biohazard bag over his head. At this point staff immediately called 911. Staff was finally able to get into the bus and monitor Shawnie until Police and EMS arrived. Shawnie was sent to Hasbro by rescue. Hasbro was notified that he had ingested poisonous chemicals.”

Of the forty days Shawnie was living at the group home, twenty-six of those days he was hospitalized.

…a long journey!

Judge Rotenberg Center

Judge Rotenberg Center, January 19, 2017 – 16 to 20 years old – Shawnie has been at the JRC for about three years now, with no elopements, hospitalizations, or police interventions. We felt fortunate that given Shawnie’s history, JRC accepted him because no other programs would. This program uses behavioral contracts and is extremely structured. The staff is beyond well trained. He earns trips home – is not taking any medications to control his behavior and is receiving his individual education plan. Shawnie is finally safe! It was a very long and arduous road getting here, but we have some peace in our lives now.

Thanks for reading!

Judge Rotenberg Center

The Halajko’s are a family of five living in Seekonk, Ma. Shane, Cheryl, Shane Jr, Shawnie, and Olivia. Together we hope and pray that by passing Bill HD.358, The Shawnie Bill, other families will not have to go through what we did. We would also like to thank Representative Steven Howitt for his support on this. We could not do it without him. All children deserve a fighting chance in life, and the Shawnie bill will make a difference. Please sign our petition to pass Bill HD.358. Let’s give parents of children with learning disabilities a long-needed break.