Sunday, February 12, 2012

Emergency

Exactly twenty years to the day that we brought Alex home from the hospital as a newborn, we were taking him to the same hospital’s emergency room. While we could feel blessed that he had never been back to the hospital in all those years and had escaped the typical injuries that send most children to the ER at least once, we were terribly upset by the reason we were taking him that December evening. Our twenty-year-old son with autism needed a psychological evaluation after weeks of anxiety had led to an unusually bad meltdown that evening. Following the directions of our local mental health facility, we had been instructed to call the police and then take him to the emergency room, where they would send someone to evaluate him.

Despite our best efforts to calm Alex that evening, he continued to spiral in his agitation and fought Ed mightily as he tried to restrain him so that he couldn’t hurt himself or us. Moreover, he refused to take Ativan, the sedative that usually calms him when he’s upset. After struggling with him for a while and realizing that we needed help, Ed told me to call the police, who arrived within minutes. The first officer calmly but firmly just talked to Alex, who was surprised to have a stranger in our home telling him what to do. However, the officer also told me that he didn’t understand why the mental health facility had told us to call them because his superior officer said he couldn’t do anything. A second officer arrived and offered to escort us to the hospital if we needed him, but the first officer insisted that they were supposed to leave. Thankfully, Alex had calmed down by this point so that we felt we could drive him to the ER ourselves instead of having an ambulance take him. In addition to calling the police, I had called my parents, who immediately came to offer support, and they went with us to the ER to help in any way they could.

Once we arrived at the ER, we had to wait for a long time before a doctor saw Alex. Despite having to wait, he remained calm for a while, but then he became agitated again, and security officers had to help us restrain him. A nurse gave him an injection of Ativan at my direction, and he settled down fairly quickly. The two hospital security guards handled Alex with compassion, and they stayed with us the entire evening, showing us empathy and kindness. One of them explained to me that he has an adult son with mental illness, and the other man told me that he has two grandchildren who have autism that he and his wife are raising, so they understood our situation. I will never forget the compassion they showed us in the middle of a horribly upsetting time. The ER doctor had little to offer other than prescriptions for Ativan capsules and injectable Ativan for emergencies. When the social worker from the mental health facility arrived, she basically told us that unless Alex was homicidal, suicidal, or psychotic, they couldn’t do anything for him until he saw one of their psychiatrists, which we already knew was a six to eight week wait to get an appointment. With that, and with Alex calm and tired from being in the ER for more than five hours, we took him home.

As we had been told to do in the ER, we followed up with our family doctor, and I explained to him over the phone what had transpired. He had concerns about giving Alex Ativan in the dosage the ER doctor had recommended because, as I already knew, it is addictive and loses its effectiveness over time if given too often. Instead, he suggested that we give Ativan only as needed for agitation, increase Alex’s Prozac dosage to help the OCD behavior that seems to trigger his meltdowns, and add the prescription drug Abilify to help the Prozac work more efficiently to calm his anxiety. When we went to refill the Abilify the following month, our insurance denied coverage, and the cost of the medication for one month without insurance is more than $730 per month. (Yes, that’s no typo; Abilify costs more than $700 for thirty tablets!) Thankfully, our doctor’s nurse appealed the insurance company’s policy, and they agreed to pay for the medication. Now, we’ll have to see how long they will continue to pay for this expensive medicine. While these changes have seemed to help Alex’s behavior, the improvements have been gradual, and he still has anxiety issues at times. We would like to see quicker progress and the elimination of his meltdowns, so we keep praying for him to recover from whatever causes his agitation and anxiety.

Earlier this month, a fifteen-year-old boy with autism was shot and killed by police in Calumet City, Illinois, which is about an hour away from us. His parents had been told by a social worker to call the police if they needed help dealing with his outbursts. Armed with a knife, he attacked the police, who shot in “self defense.” As more of these children with autism become young adults, something must be done to address their behavioral issues that make them a danger to themselves and others. Police officers need to be trained to handle people with autism, doctors need to know how to treat the various medical issues that accompany autism, and the mental health system needs to offer immediate help to families dealing with behaviors that cannot be ignored. When children with autism are little, so much time and energy is spent improving their speech, eye contact, and social behavior. Once they reach adulthood, a whole new set of behavioral problems can arise that make the earlier challenges seem so simple. Continuing to ignore the increasing number of children with autism who are becoming adults will not only hinder those parents trying desperately to get help for their children but will also create dangers for these adults with autism and those who interact with them. My son and all others with autism deserve a lot better than that. Pray for us as we keep searching for answers.

“Listen closely to my prayer, O Lord; hear my urgent cry.” Psalm 86:6

4 comments:

K. C. said...

Oh, Pam. What a frightening evening for all of you. I'm so grateful that you were shown compassion: there must have been a reason those officers were sent to be with you. I continue to send you, Alex, and Ed thoughts of peace and love.

Anonymous said...

I empathize with you. Being told our kids have to reach such depths of imminent danger before they can get help is so painful. We too pray with urgency. Blessings to Alex and your family.

Ronda said...

Outbursts are sometimes difficult for us, as well. After the onset of puberty meltdowns took on a different intensity level. Due to the fact that our son is also now almost taller even than his dad, he is definitely a more difficult match for me to physically deal with if he melts down. Thankfully, these incidents are few and far between, however recently he had one at school and apparently they had never seen him really lose control to that degree. There was no evident antecedent to the outburst. I was called to come in and calm him down, but our drive is about 30 minutes from school. My husband works closer to the school and he ultimately went in and brought him home for the remainder of the day. It is possible that he was suffering some sort of stomach bug, but although we were not seeing any symptoms at home, his younger brother had been quite ill the week prior. The following week he had a fantastic week at school. Because our son's communication skills are still so limited, it is not usual for him to communicate an illness or feeling bad to us; we just have to be able to recognize a symptom exists. I just I wish today, as I did back 12 years ago when we were just starting out, that there was more help for kids with ASD and other accompanying disorders. Parents like you and your husband and my husband and I do everything in our power to provide a loving, supportive home and all the inputs we can for our kids ---even our adult kids-- to be as independent and content as possible. Our son also continues to make gains and so, like you, we keep taking the good days with the bad and praying to be able to provide for his needs as well and as long as we can.

Pam Byrne said...

Thanks for all the kind comments and good wishes; I really appreciate your support. Ronda, I know exactly what you mean--there needs to be more help for these kids. We have done everything we know to do as parents, but as our kids get bigger, stronger, and older, we need more support. I keep praying for some miracle that will make all these kids better.
Take care,
Pam