As Devin and I rang in the New Year in January 2011, little would either of us know the major changes that would come with that year!
Devin was in the 5th grade at school, and was growing by leaps and bounds. My daughter had a rental house of her own and Lonnie was in the nursing home, so it was just Devin and me at our house along with our cat and dog.
The first major change came on January 12 when Lonnie passed away due to complications from his Alzheimer’s. Devin showed very little emotion at the time, but the grief manifested in other ways!
Devin’s Behaviors Become More Pronounced
Over the prior 18 months, I had tried to balance my fulltime job, caring for Devin and spending time with Lonnie. Suddenly it seemed like I had tons of time to fill. However, I also had more time one-on-one with Devin and I quickly realized the grasp that his autism had over him.
A few weeks after Lonnie’s death, I received a phone call from the principal at Devin’s school. He informed me that there had been an incident on the playground at recess. Devin had become upset with a fellow student over something and started kicking at him as he was kneeling in the snow. When staff told him to stop, he just kept on kicking until a staff member basically pulled him away. The principal explained that he realized that Devin had autism and that Devin had seemed very surprised after the incident as staff talked to him about it — almost like he had not even known what he had done!
I had seen this before, but it had always happened at home prior to this and I was usually the one he took his frustrations out on. Over the next few weeks, there were no more incidents at school but I noticed at home that instead of screaming and hollering when he started getting frustrated he was more likely to start by swinging his arm through the air at me. I documented this to discuss with his psychiatrist at our nexe appointment.
In early March, there was another call from the principal. It seemed that Devin had gotten upset with a girl at recess and hit her in the cheek — breaking her eyeglasses in the process. Again, Devin did not seem to recall anything leading up to the incident or hitting the girl. I offered to reimburse the parents for new glasses, but the principal said that they had told him that she had new ones coming anyway due to a recent eye exam.
At home that night, I talked to Devin about what had happened. At that point, he said that he thought he got mad because he had been building something with chunks of snow and it looked like she was going to take one of the snow chunks that he wanted to use. He was very concerned about whether the girl was ok, and the next day the principal called to tell me that Devin had apologized to the girl on his own and was very protectively hovering over her.
Later in March, we drove to Devin’s quarterly appointment with his psychiatrist. Devin was very antsy throughout the drive and at the appointment he started tapping and pulling at my arm as I was talking to the doctor. The doctor prompted him several times to stop doing this; Devin would stop for a couple of moments and then start again.
Late in the appointment, the psychiatrist stated that with all of the documented incidents and what he had observed, he recommended that we try placing Devin in a residential care facility for the summer to help him learn some coping skills to deal with his frustration. He told me that he would be contacting our local school district to tell them why he was recommending this.
The school district was not in agreement with this recommendation. The special education director told the psychiatrist that she did not see any documentation in Devin’s file regarding the two incidents at school and that there were never any issues at school that staff was not able to handle. So the idea of residential care was shelved for the time being.
The Nightmare of Easter Weekend
Easter fell in the month of April that year, and Devin had the Friday before and the Monday after Easter off from school. I was low on paid time off at work, so I arranged for a friend’s daughter to watch Devin those two days. She had watched Devin a number of times throughout the school year, but always at their house. She asked if she and her younger brother (who often played with Devin) could come to our house instead and I agreed.
About 9:30 am, my phone at work rang — it was the young lady that was watching Devin for the day. She told me that Devin was mad at her because he wanted to go outside and she had told him it was too cold. I could tell that something was not right from her voice and I asked her if she was ok. She told me that Devin had tried to push her down the steps leading to our basement when he got mad — I reassured her that I would talk to my supervisor at work and would be there in about 15 to 20 minutes. I also told her that in the meantime she could tell Devin that he could go outside but need to stay in our yard.
As I headed home, I was scared of what I might find when I arrived. Clearly, Devin was needing more help than what he was currently receiving! I felt like I had failed my son and that I was the one who had done something wrong!
When I arrived home I looked around the yard and did not see Devin outside. I entered the house and was greeted by a weeping babysitter. Devin heard my voice and called up from the basement, “What are you doing home? You are supposed to be at work!” I calmly asked Devin to come upstairs. As he entered the living room, he looked at the babysitter and said, “I suppose you told her what I did!” I told him that she had indeed told me and that I was not very happy with his behavior. His response to that was, “Well, Mom, I did not mean to put my hands around her neck.” I looked at the babysitter for confirmation, and her reply was “I did not want you to be hysterical while you were driving home, so I was waiting to tell you that part until you got home.”
After she left with her brother, I called the psychiatrist’s office and talked to his nurse. After telling her what had happened, she hung up to consult with the doctor and called me back. On the return call, she asked me how Devin was now and I told her that he was completely calm and relaxed. She said that the doctor thought it might be an isolated incident, but she also told me to call if there were any further incidents over the weekend as they had someone on call after office hours.
On Easter Sunday, Devin and I drove to my hometown (about an hour’s drive) to spend Easter with my sister’s family and my mother. Shortly before our arrival there, I prompted him in regards to expected behavior because the other cousins who would be there were at least 3 years younger than him. Devin replied with “I know” and continued watching the scenery pass by.
After a couple of minutes, he turned to me and said, “Mom, the only reason I hit and kick people is because of Dad.”
Confused, I asked him, “What does Dad have to do with this? He always told you not to hit or kick — he even made up a little song about it.”
I was completely dumbfounded by his response. “Dad keeps singing that song to me — and when I tell him I know, he just keeps singing and singing. I get made when he won’t shut up, so then I hit or kick someone!” I was not sure what to think — bipolar disorder did run in his biological mother’s family, but I was not sure that was what this was!
After we returned home that afternoon, Devin went out to play in the yard. I went out to check on him a short time later and discovered that he had not only brought a bunch of stuff out of the garage, but had also torn up some foam he had found and strung it all over the yard. Managing to stay calm, I told him that he needed to put everything away and pick up the foam. Once he was done, he was to return inside.
As I turned to walk back to the house, Devin ran up behind me and attempted to karate chop me in the back. When he realized that he had missed as I turned around, he attempted to put his hands around my throat. I watched as he turned back to clean up the mess, definitely feeling defeated and overwhelmed.
Once we were both inside, I called the psychiatrist’s office and left a message for the doctor on call. After I explained to the doctor what had happened that day as well as on Friday, he told me that he thought the best thing to do would be to bring Devin to that city (3 hours away) and have him admitted to a children’s psychiatric facility for observation. I called some family friends who were aware of what had happened on Friday and updated them — within an hour we were on the road with them to take Devin to the facility.
Devin stayed at the facility for 10 days — their recommendation at the end of his stay was the same as his psychiatrist’s had been. A part of me felt like I was giving up on my son while the other part knew deep down that this was what he needed. The school district was still resistant to the idea, so they called in an autism specialist to observe Devin at school and at home. When the specialist made the same recommendation, they reluctantly agreed.
The day that the school district agreed to the residential care arrangelements, I had a very heavy heart! I laid awake that night, trying to figure out what I could have possibly done differently to prevent this. I cursed the foster care system that had failed to see the autism in the 3 years that he was there — wondering if being treated for autism sooner would have helped. But most of all, I felt like I had failed as a parent — even though others had tried to convince me to do this as early as 2 years earlier, I still felt like the worst parent alive!
Have you had to make a tough decision in regards to your child or a loved one? I would love to hear your experience or thoughts! Please leave a comment below!