Sunday, April 22, 2012

Major Shifts

In recent blog entries, I have been detailing Alex’s increasing agitation and aggression over the past six months that led to our having him hospitalized in the Behavioral Medicine Unit of St. Anthony Hospital last month. After twelve days in the hospital and several medication changes, Alex was released and came home for ten days. While he was still not quite his old self, he seemed calmer, and we thought the medication changes were working. However, after about a week, we saw his anxiety emerging again, as he began throwing things and then had major meltdown in which he physically attacked Ed. Thinking he needed another medication adjustment, we gave him a therapeutic dose of Valium, gave him some time to calm down, and headed back to St. Anthony, where he was admitted for four more days.

During the second hospitalization, they decided to add lithium to regulate his moods and change his SSRI from Prozac to Zoloft. Since he had stabilized and had no agitation while he was there, he was once again released to come home. In addition, the insurance company, as they had during the first hospitalization, was pressuring the hospital to release Alex. He came home on a Friday afternoon, and we had high hopes that they had finally found the right combination and dosages of medications to keep his emotions under control. He seemed fine again that weekend, and we had an appointment on that Monday afternoon to see the nurse practitioner who has been overseeing his medications during his hospitalization stays.

Not wanting to create any anxiety, we didn’t even tell Alex that he had an appointment; we were just going to tell him that we were going for a ride, an activity he always enjoys. Less than ten minutes before we were planning to leave, Ed and I were sitting in our family room when we heard a thud from the den where Alex was watching television. We both jumped up to see what was going on and found that Alex was highly agitated; he had hurled his drink bottle at the wall, hence the noise we’d heard from the other room. Ed calmly tried to reassure Alex, but he continued throwing any objects he could find—books, handheld electronic games, etc.

Then he lunged at Ed, ready to attack. To prevent anything else from being thrown at us and defend himself, Ed needed to restrain Alex by holding his arms. With adrenaline fueling his strength, Alex fought Ed violently, hitting and kicking him with all his might, even biting him at one point because Ed was holding his arms and legs to stop the hitting and kicking. All the while, he was yelling apparently obsessive fears about not remembering pi digits and foaming at the mouth. Fearing for our safety, I called the police for help in restraining Alex.

When the police officer arrived, Alex had pretty much calmed down, but Ed was bruised from head to toe from Alex’s attack. The policeman was very sympathetic and asked us several questions, clearly trying to understand autism and Alex’s behavior. He stayed as we gave Alex a dose of Valium and waited to make sure he was completely calm. Once the sedative took effect, we once again headed for Michigan City and the hospital, my parents following in their car to give support.

The emergency room where Alex had been assessed just the week before was very busy, and we had to wait over five hours before he was taken to Behavioral Medicine. Fortunately, he remained calm during that time, even sleeping at one point. The ER doctor rather bluntly told us that we couldn’t keep bringing Alex “every time he gets angry,” clearly not understanding the seriousness of the situation. Nonetheless, Alex was admitted to the Behavioral Medicine Unit for the third time in a month. Once he was on the floor, Lee Anne, the nurse who had taken such good care of Alex the previous two visits, suggested that we needed to think about placing Alex somewhere he can get the care he needs instead of planning to take him home. She remarked that while medications can help him most of the time, he will still have times when he gets upset and aggressive, which has become increasingly difficult for Ed and me to handle. Exhausted and emotionally drained, Ed and I agreed that we needed to consider alternatives because the current situation obviously was not working.

The next day, Alex’s caseworker from the hospital called me to inform me of the paperwork we would need to fill out from the state to start the process of obtaining extra services for Alex so that we can get the additional support we clearly need. Working together, she and I put together the application packet for the Bureau of Developmental Disabilities. [I’ll detail this information in a future blog entry.] We also scheduled a time for Ed and I to meet with her and the nurse practitioner to discuss what needed to be done for Alex to help him. Another medication change in the form of doubling his Zoloft dosage was also made in hopes of addressing his OCD issues that seemed to fuel his anxiety.

While Alex had been cooperative and calm for the staff, the night before our meeting, he suddenly and for no apparent reason became upset during our visit with him, hitting Ed and throwing books at us. A wonderfully sympathetic psych. tech. calmed Alex and explained to us that people with autism and dementia often lash out at their caregivers in frustration because they can’t verbally express themselves. She also shared that her aunt had similar issues with an adult child with autism, and that placement in a group home had been the solution. Her cousin flourished in the group home surrounded by peers. After a month of struggles to find solutions to help Alex, Ed and I finally reached an emotionally heart-wrenching decision as parents: Alex could not come home. He would need placement in a facility where he can receive the support he needs and where we can all be safe.

Clearly, we would like to bring him home and hope for the best, but his increasingly violent behavior makes this an impossibility right now. In our meeting, we expressed our concerns and fears about Alex, which both his caseworker and the nurse practitioner, who had worked in group homes with adults with autism, understood. Apparently, aggressive behavior is fairly common in adults with autism who are in their early twenties, probably a hormonal issue. She fully supported our decision to place Alex in a facility and feels that he will improve with the structure and the exposure to peers, based upon her experience. Now we are working at getting him placed in a residential facility for adults with developmental disabilities or a group home and praying we can find something soon and not too far from home. While we hate that Alex can’t come home, we know this is what is best and hope that we can make this transition soon so that we can all start adjusting to the major changes in our lives. Please keep us in your prayers as we find a new place for Alex where he can receive the help he needs and as Ed and I adjust to missing Alex, who has been the center of our lives for twenty years.

“May Your unfailing love be my comfort, according to Your promise.” Psalm 119:76


Dawn said...

While I'm sure the words, my heart goes out to you and your family add little comfort at this time, they do. My son is 14, autistic, and just finished up with heart surgery. It's agonizing to watch your child deal with things that are beyond them, knowing you can't really help them process it. It has to be done on their time.
I hope your Alex finds a place that works for him, and he finds his way in this confusing world we live in. Just because he's taking a few steps on that path without you doesn't make you bad parents. You've made an agonizing decision to do the right thing for your son, now. That is the sign of a great parent, no matter what others say.

Anonymous said...

I read your message to me and I have been following your progress with Alex very closely. Thank you soo much for your words of support! This has got to be the hardest thing you have ever done in your life! I know that this too, in time, will happen to me also, but I hope that changes in research and medications may allow me, in the future, to not be in the same situation. Your dedication and unconditional love is inspiring to all of us. Thanks for sharing, and please keep us updated, as I will do the same.
Wendy, Asia and Elijah

K. C. said...

Oh, Pam. I don't know what to say except you are all in my thoughts. I'm sending love your way.

Anonymous said...

God bless you during this trying time. It is hard to having to make this decision but I am glad you are putting Alex and his needs first.

May the Lord comfort you both during this time of difficult transition.

Fred Haeberle said...

I hope your transition and adjustment to these new changes goes smoothly and that Alex can find comfort in the residential facility. Our thoughts and prayers are with Alex that a peer group will bring success to his development. It may take some time but I look forward to reading in your blog that Alex is able to come home for visits or to stay. It is obvious you want the best for Alex as this was a heart breaking decision for you and Ed.

Pam Byrne said...

Thanks to you all for your kind comments, support, and prayers! I know that everything will be all right in the end, and our faith will carry us through the uncertain times as we adjust to the changes. I always remind myself that God loves Alex even more than Ed and I do, so I know he's in good hands. Letting go isn't easy to do, though, I admit. Thanks again.
Take care,