Waiting

This week, Alex continued his hospitalization in the Behavioral Medicine Unit of St. Anthony Hospital. After two weeks of daily meltdowns, blood tests were run on Monday to check the levels of medication in his system as well as to make sure they were not adversely affecting his liver and kidney function. Fortunately, the various medicines intended to calm his anxiety and curb his impulsive and aggressive behavior show no signs of impacting his liver and kidneys negatively, as those results came back as normal. However, the tests revealed that he is metabolizing the drugs too rapidly so that they do not remain at the needed therapeutic levels to stabilize his mood and behavior. Considering that he eats large amounts of food daily while remaining thin, this discovery of a rapid metabolism did not surprise us. To address this issue, the nurse practitioner overseeing his medications increased the dosages this week. As with each change that has been made over the past couple of months, we always hope this will be the right combination and levels of medications Alex needs to make him better. Of course, we also know that time is needed to see the results of these changes.

One change the staff has noted this week is that Alex has become increasingly verbal. For the past several months, we had noticed regression in his language skills, as he reverted to speaking primarily in one or two words. Moreover, he usually needed prompting to speak at all, and unless he was agitated and yelling nonsense, he spoke in a whisper-level volume most of the time. This week, he has apparently been initiating questions as to when meals will be served and when Ed and I will be arriving for our daily visits. Considering that Alex has always been very time-oriented, these questions reflect his need to know when things will happen.  What has been unusual, though, is that Alex finally seems to have mastered using the correct point of view with pronouns, specifically not mixing up  you with I and me, which has confused him throughout his life. Instead of saying, “You want a shower,” when he means himself, he has been telling the staff, “I want a shower.” I don’t know what has cleared up this language problem, but this sudden understanding marks a huge step for his speech skills.

In addition, he is using language in ways that amuses the staff. One of my favorite psych techs, Michelle, who is wonderfully sweet and supportive, finds Alex entertaining and has been pleased that he’s finally talking to her. She told me that he was asking for cookies the other day, and she reminded him that he can’t eat cookies because they have wheat and milk in them, which he can’t have on his restricted diet. He agreed yet pleaded with her, “But I like cookies!” Another day as she was leaving, she said goodbye to Alex and let him know she’d see him the next day. He responded by telling her that he wouldn’t see her. When she asked him why, he cryptically said, “It’s a surprise,” which she thought was funny. Later this week, he was talking with his caseworker, Katie, who was going over a schedule with him apparently in a no-nonsense way. When she was done, Alex commented, “Katie means business!” Since we’ve always thought that Alex’s limited language has hindered his social skills, his willingness to ask for what he wants and make comments about what he notices marks improvement in his socialization as well as his speech.

To help Alex improve his self-care skills and make decisions regarding his free time, Katie has developed a program in which Alex makes choices about activities and receives rewards for good behaviors.  He can choose various activities he likes, including doing math worksheets, surfing the Internet on the computer, watching television, etc. However, he must also complete grooming tasks, such as showering, combing his hair, and brushing his teeth. Also, they are trying to teach him basic tasks, such as changing the sheets on his bed. Using charts and stickers, Alex can monitor his progress as he works toward various rewards. His ultimate reward is his favorite treat, homemade gluten-free and dairy-free cake that she asked me to bring from home. Although I would have been willing to bring various baked goods that he can eat on his diet, the unit is very strict about not allowing food brought onto the floor. Once Katie had secured permission to allow home-baked cake as a reward for Alex, I was able to bring it to him yesterday, and he happily devoured it. We are all hopeful that having cake as a reward will help stop him from engaging in any negative behaviors that he can control.

Essentially, at this point we are waiting for his behavior to stabilize as well as for the state bureau of developmental delays to approve our request for residential services. Since I’m not good at waiting, this has been a test of my patience as well as my faith. Thankfully, we know that Alex is receiving excellent care in a setting where his behavior can be monitored closely and addressed appropriately. We are also grateful for the continued support of family and friends whose encouragement and prayers remind us that God has a good plan for our lives; we simply need to wait, trust, and hope.

“Yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles. They will run and not get tired. They will walk and not become weary.” Isaiah 40:31