Coming Home

Much has happened since my last blog entry a few weeks ago. Namely, about a week and a half ago, Alex was released from the hospital and came back home. After trying different medications at various doses, the nurse practitioner overseeing Alex’s case arrived at a regimen she believes will keep his anxiety under control such that he would be unlikely to have aggressive meltdowns, which initially put him in the hospital in the first place. The hospital assured us that he was stable enough to be released and sent home. While we had concerns, we had no other options. The state funding for residential care is still being processed, and the only placement the hospital could find for him was an academy for young adults with autism in Illinois that our insurance would not cover and cost $250,000 per year. Moreover, our efforts to get state funding for Alex’s disability would have been a waste of time because if he went to the school in Illinois, he would no longer be an Indiana resident and would not qualify for aid. Consequently, we brought him home, prayed hard, and hoped for the best.

So far, he has been fairly calm, although he has celebrated his freedom in being home by asking to go places several times a day, which means that Ed chauffeurs him around quite a bit of the time. In addition, he has been requesting his favorite foods, which means that we have been playing short order cook for him. Certainly, we are happy to have him home, but we hope he settles back into a routine where he isn’t so focused on food and gallivanting around town. Fortunately, he sleeps well at night and has generally been cooperative with us. We pray this continues.

Last week, Ed and I visited day programs for adults with disabilities operated by Opportunity Enterprises, an outstanding local organization that works with people who have various disabilities. While we were impressed with the main facility that offers workshops where clients shred documents from businesses and assemble jewelry boxes or medical equipment, we felt that Alex was not yet ready for this type of working environment. However, their second facility offered a school-type setting we felt was ideal for him because he loves to learn.  This week, Ed and I took Alex to see the “new school” so that he could get a sense of what it is like. The friendliness and caring of the staff members as well as the joy of the students confirmed our desire to place Alex there for day programming. Now we are in the process of doing paperwork to see if he can be admitted because we believe he will thrive in that setting where he can learn and be with peers. We are hopeful we can get him enrolled this summer so that he can get settled before Ed and I go back to school in August.

Meanwhile, we are still working to get state disability funding, which is basically a process of generating tons of paperwork and answering multiple questions and waiting to see what support we will get for Alex. This week, an agency affiliated with the state conducted phone interviews with Ed and me to assess Alex’s needs. We have answered several of these types of questions before, so we’re becoming quite good at the interview process from sheer practice. These questions focus upon health, motor skills, communication, daily living/self-help skills, and behavior. Of course, we’re thankful that Alex has perfect vision and hearing and that he can move freely without any physical impairment. In addition, the various toileting questions made me feel blessed that he can use the toilet independently, always staying clean and dry. His main areas of weakness lie in his communication and in his need for help with daily living and self-help skills along with his behavior, which can be unpredictable at times. 

Some of the questions struck me as amusing, such as “Can he sew a button on a shirt?” Heck no—his father with a Ph.D. can’t even do that, which is why they have me do it for them. Another question was whether he closes the bathroom door when he uses the toilet. This is something he usually forgets do to, but I am proud that he always flushes and puts the seat and lid down when he’s finished, which puts him ahead of most males in the toilet courtesy department. Besides asking about his habits, we were questioned about his hobbies and interests. As we answered these questions yet another time, I felt as though I were completing an online dating survey for Alex. So what would Alex’s profile look like?

I’m a tall, thin 20-year-old single white guy who likes sports, music, computers, watching television, and reading. I’m currently unemployed and living with my parents. Looking for someone willing to drive me around because I don’t have a driver’s license or car, but I enjoy going places. Willingness to prepare food (gluten-free and dairy-free because of my food sensitivities) for me is a must; I love all foods except popcorn and mashed potatoes.  Turn-ons include math, shrimp, jazz and country music, the Game Show Network, Wal-Mart, and surfing the Internet. Turn-offs include overly salty food, rap music, hockey, and elves. If you’re willing to tie my shoes for me, we can spend fun times at concerts, going shopping, or out to dinner. However, my medications make me sleepy, so I need to be home and in bed by 8:00 P.M.

On a more serious note, we keep praying that the state agencies that provide funding for services for the disabled will move along Alex’s application smoothly so that we have options as to what placements we can choose for him. Again, we wait with faith and expectancy to see what God has planned for Alex. In the meantime, we pray that his anxiety remains under control so that we can enjoy having him home and not worry about him. 

Also, I’d like to wish a happy Father’s Day to my dad, who has been wonderfully supportive and understanding of Alex, and to Ed, whose patience and unconditional love have deservedly made him Alex’s hero. I’m thankful to have both of them in my life and for Alex to have such good role models. Their faithful presences in his life are truly a blessing, and I thank God for them.

“The godly walk with integrity; blessed are their children who follow them.” Proverbs 20:7

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

Another Week

In my last blog entry, I described how Alex had begun having daily meltdowns during his second week of this third hospitalization at St. Anthony’s. This past week, he has continued to have meltdowns, especially in the morning. Last Sunday morning, one of the nurses called to tell us that he’d had a major outburst in which he had come after a staff member, who had to get a tetanus shot after Alex had scratched her. Because he had to be sedated with an injection and was placed in isolation in his room, the nurse recommended that we not come to visit him on Sunday afternoon, as we had planned. Upset that we couldn’t see Alex and that he was continuing to become agitated on a regular basis, Ed and I tried to distract our worries by going out to dinner with my parents, and we prayed Alex would be better the next day.

On Monday, I focused on trying to see what group home placements are currently available nearby. After making several calls to different agencies in the area, I was impressed with how kind and helpful I found the people who work with group homes to be. Although none of the group homes in our county have openings right now, I was pleased to find a few available placements in neighboring counties not far from us. However, we are still waiting for the state to determine Alex’s level of disability so that he can receive services. This waiting period is probably a blessing in disguise since Alex’s still unpredictable behavior necessitates his being in the hospital where they can monitor his behavior and medication safely.

Before our planned Monday evening visit, I called the hospital to see how Alex was doing since we had not heard anything from them after his Sunday morning meltdown. Apparently right before I called, he had a fit and came after two women staff members, pulling their hair. They gave him a shot to calm him and told us visiting him would not be a good idea. Once again, Ed and I were upset that Alex had gotten agitated and physically aggressive—which was the same pattern we had been dealing with at home for months—and disappointed that we couldn’t see him.

Tuesday was basically a repeat of Monday as Alex became agitated and needed a shot to calm him. Once again, the staff recommended that we not come to see him since he’d had a bad day, for fear of stirring him up with our visit.  Since we never see the nurse practitioner who oversees his medication, I decided to call her office the next day to set up an appointment to consult with her about Alex’s behavior. Her staff told me that she would contact Alex’s caseworker to set up a time to meet next week at the hospital to discuss our concerns. Later on Wednesday, I called the hospital, hoping and praying that Alex had finally had a good day after several days in a row of bad ones. The nurse told me that he was a little “feisty” but hadn’t required any extra sedative medications; we could “come on down.” When we arrived, Alex was lying in bed calmly. One of the techs told me that he had asked for a shower earlier. When she asked him if he wanted to wait until his dad came to visit in the evening to help him with a shower, he first said that he’d wait. A few minutes later, he decided that he wanted his shower earlier and asked her to help him. Apparently, he was very cooperative for her, and as she told me, “He never gives me a bit of trouble!”

On Thursday, he had another morning meltdown but calmed down with an injection. Amazingly, one of the male techs had not only helped him shower but had also convinced him to wash his hair, which Alex has resisted lately, probably due to sensory overload. During our evening visit, he was extremely drowsy, so we didn’t stay long. His behavior on Friday necessitated two injections, which meant that he was very sleepy by the time we arrived for our visit in the evening. While it was nice to see him calm, we still hated that he had been upset earlier, making injections necessary. One of the techs told me that Alex had said he’d had sixteen shots since he’d been there this time, so I guess he’s keeping track.  Before we left, we kissed Alex on the forehead, and he grinned a sleepy smile. I whispered to him that I loved him, and he replied with a drowsy yet clear, “Love you,” which made me cry.

Yesterday, Alex once again had a morning meltdown, but they tried to hold off giving him an injection, hoping that he could calm himself. As hard as he tried to pull himself together, he finally told them that he needed a shot and specifically asked for Ativan. Fortunately, by the time we arrived in the early afternoon, he was calm. When he saw Ed, he immediately asked him to help him shower, and he was cooperative as he washed and changed into clean clothes. As he sat on his bed and talked, Alex’s language seems to be improving, which the staff had mentioned to us, as well. Instead of simply replying with one-word answers, he seems to be expanding his speech. Perhaps the medications he is taking are helping with that; we just wish that his anxiety and agitation would improve, too.

Today, on Mother’s Day, I’m praying that Alex will have a calm day and that at least I’ll get to spend some time with my boy. While Ed and I wish that he could be home with us, we know that he must be in the hospital where he can get the treatment he needs and we can all be safe. In the meantime, we keep praying for healing so that Alex doesn’t have to deal with upset and anxiety that negatively impacts his behavior. We are very grateful to the hospital staff who have treated Alex with compassion, taking care of him when we could not. In addition, we are thankful for the outpouring of support, love, and prayers from family and friends who have reminded us that we’re not alone; their kind words, thoughtful e-mails, and encouraging cards have kept us going. Through all of these daily trials, we remember that God is in control, watching over us, and loving Alex even more than Ed and I do, making sure everything in the end will be all right.

“I know the One in whom I trust, and I am sure that He is able to guard what I have entrusted to Him until the day of His return.” II Timothy 1:12

Challenges

This week has been a challenging one for us. Alex is still in the hospital as we wait for news of a residential placement for him. Although he had been doing well during this third hospitalization, this week he began having meltdowns, which reminded us why he needs to be there, where they have resources to help him, instead of at home. On Tuesday morning, the hospital called to tell us that he had awakened agitated and aggressive, so they needed to give him a sedative shot to calm him. Later in the day, he became edgy again, and they recommended that we forgo our daily visit, thinking that might stir him up again.

The next morning, they called early in the morning to tell us that he had again awakened upset and needing a shot to sedate him. Since we didn’t hear from the hospital in the afternoon, we assumed that he had been all right after that. Once we arrived at the hospital in the evening, they apologetically told us that someone should have called and told us not to come. A later meltdown had become so aggressive that they needed to put him in four-point restraints for a while so that he couldn’t hurt anyone or himself. In addition, they had to give him a combination sedative of Ativan, Haldol, and Benadryl to ease his anxiety. Also, a staff member stayed with him constantly, monitoring his behavior.

On Thursday, he continued his morning meltdown pattern and again needed medication to calm him. However, the nurse on duty that evening felt that we could come visit him because he had been fairly calm most of the day. In fact, earlier in the day, he had been able to express his frustrations verbally to his caseworker, telling her he needed crayons “to communicate” and that he didn’t like his “food choices,” requesting “more fruit,” specifically “grapes and strawberries.” When we went to visit him, he was so drowsy from the medication that he fell sound asleep shortly after we arrived. At least we were able to see him calm, which was reassuring.

Friday morning brought yet another meltdown and more medication. When we went to see him, he was resting in bed, awake yet drowsy. As Ed tried talking to him, Alex became more agitated and swatted at him a couple of times. Not wanting to make him upset, we cut our visit short and just let him rest, hoping for the next day would be better.

Yesterday, we had not heard from the hospital, so we were praying that no news was good news. Unfortunately, when we arrived, a nurse rather bluntly informed us that he had yet another morning meltdown in which security had been called when he went after a staff member, and he had been given a sedative shot. Fortunately, no one had been hurt, and the staff member who had received his wrath assured me that she was all right. Moreover, the compassion and kindness she showed for Alex eased the feelings of upset we felt for what had happened. Once again, Alex was drowsy from the sedatives, and after Ed talked with him for a while, he became agitated, swatting at him. For fear of upsetting him more, we decided to leave.  We watched outside his door, as he settled down and seemed to be falling asleep.

While these daily meltdowns are heartbreaking because we hate that Alex is so agitated, we’re thankful that he’s at the hospital where they are able to handle his behavior better than we are at home. Although we have no idea what is causing him to be anxious on a regular basis, we have seen this pattern at home where he is calm for several days followed by being regularly upset for several days. His caseworker thinks that he is tired of being at the hospital and wants to come home, but having seen him display the same behaviors at home, Ed and I tend to disagree with this reasoning. Also, these behaviors are precisely and sadly the reason why he can’t come home; his aggression is too dangerous for Ed and me to handle by ourselves.

Throughout the trials of this week, we have been blessed by the support of family and friends who have expressed their concerns and support. We are thankful for the kind words, notes, and e-mails we have received, and we appreciate all the prayers being said for our family. After being Alex’s only caretakers for more than twenty years, Ed and I have had to realize that we need help in providing for his needs, and right now all we can really do for Alex is to love him unconditionally—as we always have—and pray for him, which we have done throughout his life but now with an increased fervor during this period that requires greater faith than ever.  We face an uncertain future, not knowing where and when Alex will be placed and hoping that these meltdowns will cease so that he can get better. As we face our fears with faith, we take comfort in knowing that God loves Alex even more than we do and holds all three of us in the palm of His hand. Nonetheless, I ask for your prayers which lift us and sustain us as we wait to see the hope and future promised in Jeremiah 29:11.

“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen and help you. I will hold you up with my victorious right hand.” Isaiah 41:10

Adapting

Since my last few blog entries have been rather somber in nature, I thought I’d try to hit a lighter note and share some of the positive and amusing things Alex has done or said while he’s been in the hospital. Even though being in the Behavioral Medicine Unit should be a culture shock for Alex since he has led a rather sheltered life by spending his time almost exclusively with Ed and me, he’s adapted to being with other people amazingly well. In fact, the other day when we asked him about various staff members we sensed he especially liked, he told us that he likes “everyone at the hospital.”

He has formed bonds with some of the nurses who have taken especially good care of him. LeeAnne told me the other day that when he saw her arrive to start her shift, he came running toward her to greet her. However, he knew that he couldn’t come into the nurse’s station, so he stopped on a dime (As she told us, he stopped as though there were an invisible line he knew not to cross.) when he reached the entrance and just smiled at her until she came to say hello to him. Later in the week, Laura called to ask if Alex could drink Silk soy milk. Apparently, he had seen her drinking it and decided he’d like her to share it with him, as she had given him the organic bananas she had brought for her lunch another time. I think he wasn’t as interested in drinking the Silk as he was in just sharing a treat with her. She also said that he came over to her at one point and gently pulled her hair in a teasing, affectionate way, probably to get her attention. When she asked him if he’d tugged on her hair, he grinned and told her yes. Another nurse, Jennifer, who seems to find Alex amusing, told us that he has figured out the security code to open the supply closets on the unit, which she thought was pretty clever. The other day, apparently he decided to use the code to open the linen closet, and the staff couldn’t figure out who had opened the door until they saw Alex grinning, feeling smug that he had done it himself. She also thought it was funny that he likes to play Yahtzee with her as long as he’s winning, but if she’s winning, he doesn’t want to play any more. We’re thankful for the wonderful care these nurses are giving him as well as the kindness and understanding they show.

When we go to visit Alex every day, we try to think of topics of conversation that will interest him yet not upset him. Most of the discussion involves our asking him questions that he can give a yes or no answer. Sometimes, we try to expand his responses by asking him open-ended questions instead. The other evening, we asked him who the funniest person he knows is, expecting him to give his standard answer of “Bud”—the name he calls my uncle, whom he finds really amusing. After mulling this question, he surprised us by naming Ed’s sister’s husband, Alex’s uncle Jack, as the funniest person he knows. Apparently, he remembers Uncle Jack as pretty amusing because he laughed just thinking about him. When we asked him about another funny guy, a clown named Corky whom we saw at the county fair several years ago, this also made Alex laugh. The next day we asked Alex about a funny person he saw at the fair, anticipating he would tell us “Corky the Clown.” When we asked him, “What was the name of the funny guy you saw at the fair?” without missing a beat, he told us Grandpa. Since he had seen Grandpa at the fair, and Grandpa is a funny guy, this was a good answer that made all of us laugh. Although Alex’s hospitalization has been a stressful time for our family, his surprising ability to adapt and adjust to the changes has been comforting to Ed and me. For someone used to only being at home and to following routines he has developed over the years, Alex seems content to allow new caregivers to help him, and he likes the activities they have planned. At the end of a recent visit, Ed asked him what he was going to do later, whether he was going back to the day room to watch tv or stay in his room and read books. Alex thought for a moment, smiled, and said, “Wait and see.” As we anticipate and question what God holds for our future, we see wisdom and faith in Alex’s comment: “Wait and see.”

“And David said to his son Solomon, ‘Be strong and of good courage, and do it; do not fear nor be dismayed, for the Lord God—my God—will be with you. He will not leave you nor forsake you, until you have finished all the work for the service of the house of the Lord.” I Chronicles 28:20

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

Alex's Hospitalization: Week One

As I have explained in previous blog entries, last month Alex was admitted as an inpatient to the Behavioral Medicine Unit of St. Anthony's Hospital in Michigan City. While he has been dealing with severe anxiety off and on for about six months, he had several recent episodes where he became extremely agitated and aggressive. Although the decision to hospitalize him was difficult, Ed and I were very pleased with the care he received at St. Anthony's. [The room where Alex stayed can be seen in the photograph on the left; his room was on the third floor and looked between the flagpoles.]

The first week of his hospitalization, the staff worked at trying to get him weaned off the three medications he had been taking--Prozac (an SSRI used to help his OCD and anxiety), Ativan (a sedative used to calm his outbursts), and Abilify (an anti-psychotic used to help Prozac work better and to ease his anxiety). Instead, they put him on Depakote (an anti-seizure medication also used to regulate moods), Valium (a sedative to calm his outbursts), and Invega (an atypical anti-psychotic to ease his anxiety). Before trying Invega, they gave him Risperdal, a medication commonly used in autism to treat aggression. However, he showed neurological side effects, so they took him off it immediately and gave him a medication to counteract the negative effects. Between withdrawal from the old medications and trying to get the dosage and combination correct for the new medications, the first week was a roller coaster ride. At times, he was very sweet and calm, and at other times, he reverted to throwing things and hitting when he became upset. Thankfully, the staff handled him quite well and understood that he couldn't help his behavior.

One day a staff person who didn't realize that Alex couldn’t eat foods with glutens or milk allowed him to eat cheesecake. After that, Alex had a terrible meltdown and another one the next afternoon. I don't know whether the cause was the cheesecake or simply coincidence, but he won't be eating cheesecake again anytime soon. Later that day, his behavior became so aggressive that they had to put him in four-point restraints (both arms and both legs) until the injection of Geodon, a sedative, kicked into his system, making him calm again.

When Ed and I went to see him the evening after he had been in restraints, we didn't know what to expect, but he was calm and pleasant, which was reassuring. Also, someone had helped him wash, shave, and put on clean clothes before we arrived. He looked pretty good for someone who'd had such a rough time earlier in the day.

During the first week, Alex had a pattern of having meltdowns shortly after lunch. The staff learned to be on guard around 1:00 because he seemed to get agitated at that time for some reason. During the week, visiting hours were scheduled in the early evening, but on weekends, visiting hours were at 1:00-3:00 in the afternoons. Knowing his history of post-lunch meltdowns the first week, Ed and I were leery about going to see him during the bewitching hour, but we hoped for the best. After having had a good morning (as we were told by the staff), he once again became agitated and aggressive shortly after we arrived at 1:00 on Saturday. He threw a cup of water, began hitting Ed and then a psychiatric tech who came to help, pulled a nurse’s hair, and began yelling nonsensical complaints, which the nurse explained was evidence that his mind was racing.

They placed him in an isolation room so that he could calm down. While it's not a padded cell, it's a small room with nothing other than gym mats on the floor and a window in the door for observation. Even though Alex was really upset, he obediently sat on the floor mat and managed to calm down enough for them to give him an injection of sedative. After the sedative kicked in, we were able to spend a few minutes with him but decided not to risk his wrath by overstaying our welcome.

That evening I talked with one of his nurses, who told me that he had a good afternoon and had remained calm, which was reassuring. They had decided that Ed and I should forgo our daily visit on Sunday to give Alex a day to adjust to his new medication schedule. She told me that they have to do this with elderly dementia patients, as well, because seeing family reminds them that they want to go home, and that makes them agitated. We trusted their judgment and their ability to care for Alex, so we did not go to see him on that Sunday, a week after he’d been admitted to the Behavioral Medicine Unit.

Thankfully, his nurses were terrific about providing reports about Alex over the phone so that we knew what kind of day he'd been having. One of them called that Sunday morning to make certain that Alex wasn't supposed to have any kind of milk. She discovered that lactose-free milk was on his breakfast tray this morning, and she took it away before he drank it, knowing his food sensitivity to milk. I explained that the problem isn't lactose intolerance for him, but a reaction to caseins, the proteins in milk. He doesn't digest them properly, and this can cause digestive and behavioral issues. In looking over his chart, she noticed that he'd had lactose-free milk for breakfast and lunch the two days he'd had terrible meltdowns. While that could have been coincidence, she and I agreed that he shouldn't be drinking any kind of milk, and she marked on his chart that he could not have ANY milk products to avoid any future dietary confusion.

When I called later that afternoon to see how he was doing, his nurse told me that he'd had a good day without meltdowns. The only bad thing he did was to throw a cup of water, so she made him sit in the "quiet room," the isolation room with gym mats on the floor. She said he was fully cooperative and walked there without having to be led. He sat there for a few minutes calmly and then was able to go back to his room without incident. This showed a huge improvement from the previous few days.

That evening, I spoke with another nurse, who told me that Alex had continued to be cooperative. She said that they had a new patient who was quite loud, and Alex had the good sense to leave the noisy day room voluntarily on his own, going back to his room and calmly reading a book instead. Again, this showed progress because he'd removed himself from situations that could escalate his anxiety.

Basically, the first week of hospitalization for Alex was one in which he alternated between his pleasant “Dr. Jekyll” personality and his aggressive, anxious “Mr. Hyde” counterpart. Fortunately, the medication changes made appearances of Mr. Hyde less frequent, and the improvements as time went on that first week gave us hope that he was adjusting well to the new medications. In my next blog entry, I’ll detail events of his second week of hospitalization.

“I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

Alex's Hospitalization: Admission

In my last blog entry, I explained how an especially aggressive outburst had led us to bring Alex to St. Anthony Hospital’s emergency room for a psychological assessment. Although we were able to calm him with a shot of Ativan before we left home so that we could travel to Michigan City without incident, he had another even more aggressive meltdown while in the emergency room that required another shot of Ativan along with a shot of the sedative Haldol. With both medications in his system, Alex was drowsy and no longer agitated, ready to be moved to the Behavioral Medicine Department, where he would be admitted.

When LeeAnne, the nurse from Behavioral Medicine, came with a wheelchair to get Alex, she told us that she couldn’t take him up to her department until someone from hospital security came to accompany us. She explained that this was hospital policy for everyone’s protection, and knowing that we would have a security officer with us in the hallways and elevator was comforting to me, rather than upsetting, because we would have someone to help if he became agitated again. With the arrival of a Michigan City police officer, we began the trek up to the third floor, where Alex would spend the next several days.

For safety reasons, the Behavioral Medicine Department is a locked ward with limited access to visitors. Once we arrived there, LeeAnne unlocked the door and then locked us inside. As someone who is claustrophobic, I had to fight my own anxiety about being locked in someplace and focus on getting Alex settled. She took us back to a kitchen area, where she weighed Alex and asked us dozens of questions needed to fill out required paperwork. From all the sedatives he had been given, Alex was drowsy and kept laying his head on the table, but contently grinning. LeeAnne explained that while the ER had to use strong medicine to sedate him, the goal of the Behavioral Medicine Department was to use medications that would make him calm yet alert, which was comforting.

One of the concerns that the nurse in the ER had raised came up again as we went over paperwork for his admission to Behavioral Medicine; we did not have legal guardianship of Alex, who is twenty years old, nor did we have a medical power of attorney document for him. Since he is legally an adult, he has the right to make decisions for himself, but his earlier behavior clearly indicated that he’s not capable of making important decisions on his own. Moreover, to protect people from being committed to a mental health facility against their will, rules are even more stringent than with other medical procedures. However, the emergency room doctor agreed to sign a document granting a 72-hour emergency psychiatric hold, which allowed them to admit Alex into Behavioral Medicine for initial treatment. We knew that he would likely need to stay more than three days, and we knew that we would have to have the legal papers drawn up quickly to assure that he received the treatment he desperately needed.

As LeeAnne asked us various questions about Alex’s autism and his habits, I began to realize that he was going to have some adjustment issues since he’s always lived at home with Ed and me, who had always attended to his various needs and idiosyncrasies. For instance, Alex hates getting water in his eyes; therefore, he always takes baths instead of showers. However, they only had showers, so this was going to be a major change for him. LeeAnne assured us that someone would help Alex with showering. Also, Alex’s restrictive gluten-free and casein-free diet could pose another problem, but she told us that they would alert the dietician and find foods that Alex could eat on his diet. (My fears of his allergen-free diet being compromised while he was in the hospital later came to pass as he was unknowingly given foods with glutens and milk; I’ll detail that in a later entry.) Another concern we had was what Alex would do all day since he wouldn’t have his books, handheld games, and computer, nor would he be allowed to watch television as he pleased. LeeAnne assured us, as she did with every concern we raised, that he would be kept busy with various activities and that they would take good care of him.

Although I had packed a bag with a change of clothes, LeeAnne told me that he only needed a change of underwear and his toothbrush and toothpaste; they had things for him to wear. She took him to change his clothes while Ed and I talked with the psychiatrist, a kind man who reinforced our belief that we had brought Alex to a place where he could get the help he needed. At one point, I looked out the window in the door to the hallway and saw a tall, handsome young man dressed in surgical scrubs. I wondered if he was a doctor when I first saw him, and then I realized it was Alex dressed in scrubs, looking rather professional, especially considering the terrible night he had endured.

After we had given all of the necessary information and had been given information about visiting hours and the numbers we could call to get updates on Alex, we knew the time had come to leave Alex there. I remembered how I felt the first time I dropped Alex off at special education preschool, and this felt exactly the same way: I was entrusting my baby to other people and praying that they would take precious good care of him. Both times, Alex didn’t seem fazed to be left, but I was teary-eyed while trying to be strong in saying goodbye to him, knowing this time that we wouldn’t see him until the next day. LeeAnne again reassured us that they would take good care of him and added that Alex would likely sleep most of the rest of the day from all the sedatives he’d been given. With that, Ed and I left our son, met my parents who had adamantly insisted that they would stay in the waiting room and support us, and began the walk to our cars in the parking lot as Sunday church bells tolled from a church down the block from the hospital.

Once Ed and I got in our car, I began to sob the hardest I’ve probably ever cried in my life. Ed comforted me and commented that I’d been saving that up for a while, and he was right. I’d been as strong as I could through that entire ordeal, and now I was emotionally spent. Beyond fear and sorrow, the tears also came from relief. For years I had feared that we would eventually have to put Alex in the hospital at some point. As upsetting as it was to leave him there, I was relieved that we had found a place where he could get the help he needed, and I knew we were doing what was best for all of us.

In future blog entries, I’ll detail Alex’s hospital stay and recovery in the Behavioral Medicine Department. As we celebrate Easter today and the resurrection of Jesus Christ, I thank God for sending His Son to save us and for His healing power to save our son.

“For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life.” John 3:16

Alex's Hospitalization: Emergency Room

As I described in my last blog entry, an especially bad meltdown last month required my calling 911 and having police officers restrain Alex in handcuffs so that he would stop physically attacking Ed and so that I could give him an Ativan injection to sedate him. Once he was calm, Ed and I decided that even though it was the middle of the night, we were going to take him to St. Anthony Memorial Hospital in Michigan City in hopes that their Behavioral Medicine Department could help his extreme anxiety, agitation, and aggression. After printing off maps and directions from Google, I quickly packed a bag for Alex with his toothbrush and toothpaste along with a change of clothes. Since my dad knew how to get there, he led the way with my mom and me in their car, and Ed followed in our car with Alex.

Sleepy from his middle of the night awakening and the Ativan injection, Alex thankfully was calm during the half hour ride to the hospital. All the way, I kept praying that he wouldn’t erupt again en route because I wasn’t certain what we would do if he did. Armed only with Ativan pills, our cell phones, and my dad’s car equipped with OnStar, I guessed that we’d try to give him Ativan and call 911 for help. Fortunately, he seemed to enjoy the ride, and we didn’t need a contingency plan. About three-fourths of the way there, we passed a gas station that had a large brightly lit sign with the gas prices advertised. Since Alex has been fretting over high gas prices, I was extremely nervous that he’d see the sign listing gas prices over four dollars per gallon and get really upset. However, he didn’t seem to notice, which was a blessing. The good thing about leaving at 4 A.M. was that the two state highways we took to get to the hospital were free of traffic, so we the trip went smoothly.

Once we arrived at St. Anthony’s Emergency Department, we were relieved to see that the spacious and attractive waiting room was completely empty. As Alex, Ed, and my parents sat in the waiting area, I gave the emergency room clerk all the necessary information about Alex, his medications, and our insurance. A nurse soon took us back to an examination room, where we explained the two major meltdowns Alex had experienced within the past 24 hours. The nurse weighed him, took his temperature, pulse, pulse oxygen, and blood pressure while Alex remained calm and cooperative. She then took us to another room in the emergency room where Alex would spend the next few hours.

They had Alex change into a hospital gown, and we were able to convince him to lie on the hospital bed to rest. A doctor came in to examine him, and we again explained the day’s events surrounding Alex’s anxiety and aggression. The doctor ordered blood and urine tests, and we weren’t certain how cooperative he would be for those. I asked if they could use a “nun’s cap” specimen container in the toilet so that Alex could sit to give his urine sample, knowing that he’d be able to do that better than to urinate in a cup. Within a few minutes, he was not only able to provide a urine sample, but he nearly filled the large specimen collector. Two registered nurses, strong young men, came to take his blood samples, and Alex was remarkably calm and cooperative, even though they took five test tubes of blood. At that point, they told us we’d have to wait 60-90 minutes for the test results to come back from the lab before any decisions would be made about his treatment.

Since the room was small, Ed suggested that he would stay with Alex and that I should join my parents in the waiting room; the two of them would try to get some rest while we waited. I felt guilty about leaving them, especially since the waiting room had comfortable chairs, a large screen tv, and vending machines with food and drinks, but Ed was right that it was better for just the two of them to stay in the ER room. Concerned about how Alex was doing, several times an hour, I would check on the two of them and was relieved by the calm and quiet that he was fine.

Around 6 A.M., we knew that Alex would need Ativan, or he was likely to have a meltdown. I asked the nurse for an Ativan tablet, and we tried to give it to Alex, who was not cooperative at all. The nurse tried various tricks to get him to swallow the pill, but Alex became more and more upset. Since he wouldn’t swallow the pill, they had to give him an injection, and he fought that mightily, as well. Held down by the two male nurses and Ed, another nurse gave him the injection. Later these young men commented that they couldn’t believe that Ed had been able to restrain Alex by himself because Alex is so strong. Despite the injection, Alex continued to be agitated and aggressive, and he resorted to the only thing he could do with his arms and legs restrained: yelling and spitting. Because he refused to quit spitting, one of the nurses put a disposable face mask on Alex, which angered him even more but prevented him from spitting on them. After a while, they decided he needed more sedative, so one of the nurses used the call button to ask someone at the nurse’s station for a syringe with Haldol. Whoever answered his call told him that he’d have to ask his nurse for that, to which he responded, “I AM the nurse!” Soon another nurse came to give him the injection, and finally the sedatives kicked in, allowing Alex to calm down and rest, and giving the guys a rest from restraining him.

Once Alex was drowsy, I asked Ed if there was anything I could get him, and he asked for some coffee. He probably regrets that request; he later told me that he hoped the coffee I brought him was free because it was the worst coffee he’d ever had. Since it cost 50 cents and came out of the vending machine, I guess he couldn’t expect too much. The longer we had to wait, the more we worried that Alex would once again erupt, so I began hanging around the nurse’s station and asking questions. After finding out that Alex’s lab test results were back, I asked what they were waiting to decide. The shift changes had meant new nurses and doctors, and I had to figure out who knew what was happening.

Fortunately, I spoke with an emergency room clerk who had a take-charge attitude and was willing to make phone calls to find out what was holding up Alex’s admission. She checked with his nurse, the ER doctor, and the psychiatrist on call, and then we started to make progress. However, we encountered a potential setback when his nurse asked if we had a medical power of attorney document for Alex. Assuming that we as his parents could make medical decisions even though he’s legally an adult, just as spouses can make medical decisions for each other, we didn’t realize this was something we needed to have in place. When I told the nurse we didn’t, she explained that the ER doctor would have to have Alex placed under 72-hour emergency hold for psychiatric evaluation, and the ER doctor was willing to approve the emergency admission. However, we would need to get the legal papers drawn up quickly to have him hospitalized for longer than three days. Not long after that, a nurse from the Behavioral Medicine Department came with a wheelchair to transport Alex for admission to her department. When I saw that she wore her identification card on a lanyard bearing the name and logo of my favorite NASCAR driver, Jeff Gordon—similar to the Jeff Gordon lanyard I wear at work with my school ID—I knew God was sending me a sign that we had brought Alex to the right place. While we weren’t happy that we would have to leave Alex at the hospital, I knew I could entrust him to another Jeff Gordon fan, LeeAnne with her maternal compassion that put me at ease.

I’ll share more of our experience with Alex’s hospitalization in the Behavioral Medicine Department in my next blog entry.

“When you pass through the waters, I will be with you; and when you pass through rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” Isaiah 43:2

A New Kind of Autism Awareness

Today marks the beginning of Autism Awareness Month. This week the Centers for Disease Control released new statistics regarding the prevalence of autism, which has nearly doubled in the past five years. The new figures indicate that 1 in 88 children has autism; considering that autism is much more prevalent in boys than girls, this means approximately 1 in 54 boys has autism. Of course, the government agencies that have no real answers as to what causes autism—other than they’re certain vaccines are not responsible—can only point to better diagnosis as a reason for this dramatic increase. Despite these staggering numbers of children diagnosed with a lifelong condition that can significantly impair the quality of life for them and their families, as well as costing thousands of dollars per year—often not covered by insurance—for various therapies to address issues related to autism, much less money is spent on research for autism than other conditions that affect children.

As far as children with autism go, Alex is one of the fortunate ones. Overall, he is quite healthy, unlike many who suffer from chronic infections and painful intestinal problems. He sleeps well, although aided in his younger days by the natural supplement melatonin, in contrast to many children with autism who wander around all night, unable to sleep. Despite a somewhat limited diet because of his sensitivities to glutens and milk products, Alex eats a variety of foods and enjoys them heartily. Many children with autism eat only a limited amount of foods, bothered by smells, tastes, and textures. While some children with autism are nonverbal, Alex can express himself—albeit with some difficulty—verbally, and he has been an avid reader since he taught himself to read as a preschooler. Even though we spent several years potty training Alex, we are thankful that he can toilet independently while others with autism must wear diapers.

Although many families struggle financially to provide the money needed to fund needed therapies, such as speech, occupational, physical, and psychological, we have somehow always found the money on our teachers’ salaries to pay for anything Alex needed. Nutritional supplements needed to supplement dietary needs for children with autism are not covered by insurance and can be quite costly; we have been fortunate that the Lord always provided the money for us for these necessities. In addition, we are blessed to have jobs that allow one or both of us always to be home with Alex; I teach in the morning, and Ed teaches afternoon and evening classes. This ideal schedule permitted us to homeschool him so that he could receive a truly individualized education program that addressed his strengths and weaknesses and met his needs. Perhaps the greatest blessing—as I know we have things easier than other parents of children with autism—has been that Alex’s personality has been easygoing and docile, and he has generally been quite cooperative. Other parents of children with autism often struggle with behavioral issues and work diligently to make their children compliant so that they can function and learn. In the autism lottery, we seemed to hold a winning ticket.

The past six months, Alex has been dealing with increasing anxiety, probably due to hormonal changes. As I have mentioned in previous blog entries, anxiety leads to increased adrenaline in Alex, which leads to aggression. At twenty years of age, he’s six feet tall and extremely strong when he’s agitated, which makes him nearly impossible for Ed and me to handle. After a trip to the emergency room in December to have him sedated after a particularly difficult meltdown, his medications were changed, and we hoped for the best. However, the medication changes at best were not helping, and at worst they seemed to be making him even more anxious. After a visit to a psychiatrist, who suggested that the Abilify Alex was taking could be giving him akathisia, or inner restlessness, we reduced his dosage from 5 mg to 2 mg. That morning, he had another terrible meltdown, so we again took him to our local emergency room, where a nurse candidly informed me, “We suck at psychiatric care. You’ll have to take him somewhere else.” After waiting for nearly two hours for him to be assessed by the local mental health facility, a doctor told me that when she spoke to them on the phone they had already told her that they would not admit Alex to their facility because he has autism. All they could offer was that we could take him to facilities more than an hour away. With that, we went home feeling frustrated and helpless. Fortunately, Alex had calmed down without having to be sedated by injection, and he stayed calm the rest of the day.

That afternoon, I began searching online for facilities that might address his anxiety and need to be constantly monitored during medication changes. I found two in neighboring counties and wrote down their information for future reference. I didn’t realize how soon we would need my notes. That night at 2:00 A.M., Alex awakened agitated and aggressive, attacking Ed forcefully. Fearful that one or both of them could be hurt badly, I called 911 and my parents; the police, paramedics, and my parents all came to our rescue within a matter of minutes. Two strong but kind policemen were able to restrain Alex in handcuffs while he continued to yell nonsensical remarks. The paramedics apologetically explained that they were not able to give him any sedatives. However, the policemen were willing to hold Alex still while I gave him a shot of Ativan I had on hand for emergencies. Moreover, they stayed with us until the medication kicked in and Alex was calm, allowing them to remove the handcuffs. The compassion of these professionals, who told us to call them again if we needed them, helped tremendously in a horrible situation.

Once Alex was calm, I called the 24/7 phone number for the Behavioral Medicine Department of St. Anthony Memorial Hospital in Michigan City, about a half hour drive from our home, to see if they would take Alex. The woman on the phone assured me that they did treat adults with autism and told us to bring him to their emergency room, where he would be assessed before he could be admitted to Behavioral Medicine. Since Alex was drowsy from his middle of the night awakening and the Ativan shot, I suggested to Ed that we take him to St. Anthony’s while he was still calm so that we could get him the help he clearly needed before we had another major meltdown. Ed agreed, and with a quick gathering of everything we needed to take with us, Ed and Alex set out in our car with my parents and I leading the way in their car with Google directions in hand at 4 A.M. on our way to St. Anthony’s. This was just the beginning of a nearly two-week hospitalization for Alex, which was the hardest yet best decision we had ever made as parents. Fortunately, God had provided us with an outstanding facility and staff who could give Alex the care and compassion he needed, as I will detail in upcoming blog entries.

And so for us, as with most parents of children with autism, the day-to-day life of raising a child with autism is much more than one month of media coverage, wearing brightly colored puzzle-piece ribbons, Autism Speaks’ campaign of “Light It Up Blue” by shining blue lights on April 2nd, and new autism prevalence statistics that should shock and motivate people that this is an epidemic that cannot be ignored any longer. For some families, autism means mortgaging their homes to pay for therapies their children desperately need. For others, autism means tremendous family stress that leads parents to divorce. For us, it’s driving our severely anxious adult son to a hospital thirty minutes away because no local help exists, praying that we get him there before he has another meltdown and praying that they can help us find the sweet young man we know exists behind the aggression caused by brain chemistry that needs to be fixed. Welcome to Autism Awareness Month; please fasten your seat belts, as we seem to be experiencing some turbulence.

“When darkness overtakes the godly, light will come bursting in.” Psalm 112:4

Pardon the Interruption

"I took my love, and I took it down. I climbed a mountain, and I turned around. And I saw my reflection in the snow-covered hills 'til the landslide brought me down...Well, I've been afraid of changing 'cause I've built my life around you. But time makes you bolder; children get older. I'm getting older, too."-Stevie Nicks, "Landslide"

Regular readers of One Autism Mom's Notes may have noticed that I missed a week of my faithful Sunday and Wednesday postings last week. In fact, one of my good friends, who knows my responsible nature, immediately e-mailed me, knowing that something was wrong when I didn't publish updated posts. Something was wrong. Last Sunday, we had Alex admitted as an in-patient to the Behavioral Medicine Department of a nearby hospital. After about six months of unpredictable behavior, apparently caused by severe anxiety, he had become so agitated and aggressive that Ed and I felt he needed round-the-clock trained psychiatric care to monitor his medications. Thankfully, we were able to find an excellent hospital a little over a half hour away from our home.

While this decision was obviously heart-wrenching for us, we have been extremely pleased with the facilities and staff where he is staying and receiving wonderful care. Basically, they are taking him off the three medications he had been taking and putting him on three new ones. Withdrawal from the old medications will take some time, as will finding the right combinations and correct dosages of new ones. Needless to say, my brain has been overwhelmed dealing with these concerns. Moreover, we've spent a great deal of time regularly consulting with the staff and making daily trips to visit him. Consequently, I haven't found the time to write the blog.

As we go through this situation, I have been taking notes and will relate our experiences in future blog entries in hopes that others can benefit from what we have learned. For example, we've discovered what a medical power of attorney document is and why parents of children over 18 with autism should have one in place before one might be needed. Once I wrap my brain around all the new information we've gained this past week, I will have many topics for future blog entries. In the meantime, I hope readers understand and will be patient with me until I'm ready to write the regular Wednesday and Sunday entries. We have much work ahead of us, and I'll have many things to share.

"For I am the Lord, your God, who takes hold of your right hand and says to you, 'Do not fear; I will help you.'" Isaiah 41:13

Brain Anatomy and Autism

Last week, I had the opportunity to watch a fascinating free webinar about brain anatomy. Sponsored the Great Plains Laboratory, Dr. Kurt Woeller offers monthly online lectures about topics typically related to autism. Although I majored in English in college, I’ve always had an interest in medicine and psychology, two of the areas I’ve researched intensively since Alex was diagnosed with autism. This month’s online seminar, entitled “Brain Regions and Their Dysfunction in Autism—Clinical Correlations for Behavior, Language, and Cognitive Problems,” provided a clear description of the anatomy of the brain along with an explanation of how autism symptoms can manifest if inflammation exists in certain regions. Dr. Woeller asserts that brain inflammation is a major contributing and causative factor in autism. Moreover, he cites various sources of neurological inflammation in autism: glutens and caseins from foods, heavy metal toxicity, and infections from bacteria, viruses, and/or fungi, such as yeast. Since we have treated Alex for heavy metal toxicity and yeast overgrowth as well as kept him on a gluten-free and casein-free diet upon discovering he has sensitivities to both, I strongly suspect that many of his issues are directly related to inflammation of his nervous system.

Dr. Woeller’s webinar focused upon regions of the brain and explained how inflammation in these regions can affect behavior and function. A summary of the function of each area and how dysfunction manifests follows.

The frontal lobe of the brain deals with understanding the connection between actions and consequences and making decisions. Those who have inflammation of this lobe tend to have no sense of danger, engaging in risky behavior, such as climbing and fleeing. Problems with this lobe can also lead to a loss of smell and taste. Fortunately, Alex does not exhibit problems with the frontal lobe as he tends to be quite cautious and possesses a keen sense of smell and taste.

The parietal lobe is involved with sensory information and the ability to read and solve math problems. Since Alex is quite strong in his sensory processing, reading, and math skills, I suspect that his parietal lobe has not been affected.

The temporal lobe is responsible for many areas related to language processing, including grammar and word production, semantics of speech, and functions of language, all of which are problematic for Alex. In addition, facial recognition occurs in the temporal lobe, and Alex has some trouble recognizing people’s faces, often confusing his cousins who are siblings. While I think Alex understands what is being said to him fairly easily, he has always had difficulty producing speech. Consequently, his temporal lobe has likely been impacted by neurological inflammation.

The occipital lobe, which receives information from the eyes, processes visual input. Those with problems in this area often cannot identify colors even though they can see them. Alex’s strengths lie in his visual processing because he is quite visually perceptive, noticing small details most people would miss. Hence, he probably doesn’t have issues with his occipital lobe.

The cerebellum, a common site of abnormality in autism, according to Dr. Woeller, coordinates smooth body movement. Symptoms of problems in the cerebellum include hypotonia, or low muscle tone, balance issues, awkward gait, difficulty with speech articulation, and trouble with planned movements. Alex has had problems with all of these areas, which we have addressed with speech therapy and occupational therapy. However, he still struggles with motor issues, which makes self-care tasks difficult for him. Therefore, Alex likely has inflammation of his cerebellum, evidenced by his difficulties with fine and gross motor skills.

For me, gaining understanding about what each lobe of the brain controls and how inflammation can disrupt specific critical processes helped me realize why certain tasks are so difficult for Alex. As we continue to seek ways to help his nervous system heal, we pray that eventually all those tasks that frustrate him will eventually come easily so that he can reach his full potential.

“O Lord, listen to my cry; give me the discerning mind You promised.” Psalm 119:169

Daylight Savings Time

“Time, time, time, see what’s become of me while I looked around for my possibilities…Hang onto your hopes, my friend. That’s an easy thing to say, but if your hopes should pass away, simply pretend that you can build them again.”
--“Hazy Shade of Winter” by Paul Simon

On this first day of daylight savings time, I admit that I dread this annual “springing forward” where the clocks are turned ahead one hour. Since I have to get up by six o’clock every morning to get ready for my job as a teacher, I know that for the next few weeks, I’ll be waking up in the dark again after the past few welcome weeks of awakening to early sunlight. I also know that my body will need a few weeks to adjust to going to bed earlier and getting up earlier as my system tries to reset its circadian rhythms.

I’m certain that those who decided daylight savings time is a good idea probably don’t have to get up as early as my colleagues and I do. In doing some background reading about the origins of this concept of shifting time, I ran across an online article [To read this article, click here.] from National Geographic that indicates Ben Franklin first came up with this idea of making better use of daylight. During World War II, the United States mandated daylight savings time as a way to save resources. In my home state of Indiana, until 2006, most of the state opted not to go on daylight savings time, so in the spring, summer, and early fall, all counties were on the same time, but in the late fall and winter, a handful of counties were an hour behind the rest of the state. Interestingly, a study in Indiana showed that daylight savings time really did not save energy, one of the primary reasons given for moving the clocks ahead one hour.

Besides my resistance to get up earlier in the dark, I always fret about how the time change will affect Alex, who is sensitive to changes. Although he has understood the concept of daylight savings time and has been very aware of telling time, even when he was little because he loved clocks, Alex doesn’t always readily adapt to the time changes in the spring and fall. Over the years, we have tried adjusting his bedtime by a few minutes each night in the days prior to the time changes, and that never really seemed to make a difference. Like his mother, within a few weeks, he simply adapted to the changes and was able to adjust his sleeping habits.

This year, we’re hoping that daylight savings time is the change Alex needs to reset his internal clock that has been off for several weeks. Like a preschooler, he has been getting sleepy shortly after supper and going to bed in the early evening, which means he also awakens between 5:30 and 6:00 A.M. Also, he has been insisting that he wants to eat dinner about an hour earlier than we normally eat, telling us he’s hungry around 4:00 or 4:30 when we usually eat dinner between 5:00 and 5:30. I guess because he starts the day about an hour earlier than he used to has completely thrown off his internal clock and shifted his basic routines of sleeping and eating forward an hour. With fingers crossed and prayers said, Ed and I are hoping that shifting the clocks forward an hour will remedy this situation so that he’ll get up around 7:00, go to bed after 9:00, and be ready to eat dinner at 5:00 or 5:30. In fact, we were tempted to not change the clocks so that Alex would rely on his biorhythms instead of the actual time. So, we shall see how he adapts and hope for the best. Maybe this daylight savings time will be one to celebrate instead of to endure. If Alex adapts nicely, it will be worth getting up in the dark—at least that’s what I’ll tell myself tomorrow morning as I stumble out of bed an hour earlier than my body is used to doing.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

Gluten-Free, Casein-Free Diet

Last week, Science Daily ran an article regarding research into the benefits of the gluten-free, casein free diet for children with autism. [The article entitled “Gluten-Free, Casein-Free Diet May Help Some Children With Autism, Research Suggests” may be accessed by clicking here.] According to researchers at Penn State University, children with autism often have gastrointestinal issues and/or allergies, and removing glutens and caseins from their diets seems to improve their physical symptoms as well as their behavior. In this article, one of the researchers, Professor Laura Cousino Klein, suggests that “autism may be more than a neurological disease—it may involve the GI tract and the immune system.” Of course, for years many doctors and parents who have pursued biomedical treatments have asserted that gut issues impact the brain and influence behavior in autism. Some of the benefits found in children who were on strict gluten-free and casein-free diets included improved eye contact, better language production, and increased attention span. Moreover, they found that parents who completely eliminated gluten and casein from their children’s diets found the greatest benefits. Professor Klein emphasizes the importance of vigilance in monitoring the child’s diet, stating, “If parents are going to try a gluten-free, casein-free diet with their children, they really need to stick to in order to receive the possible benefits.”

This research caught my attention because Alex has been on a strict gluten-free and casein-free diet since he was seven years old. At that time, I began reading about benefits of using the GFCF diet in children with autism, and I asked his doctor if we could run a food allergy test. Although I was a bit overwhelmed at the prospect of implementing this restrictive diet, I decided before we ever ran the food allergy test that if he, indeed, showed allergies or sensitivities to certain foods, we would remove them from his diet. I can still remember vividly sitting in the doctor’s waiting room scanning the test results the nurse shared with me before I talked with his doctor.

Disappointed but determined, I realized that we were going to have to eliminate wheat, oats, barley and other glutens as well as all milk products from his diet because he showed sensitivities to all of these foods, plus a few others. Armed with research I’d gathered from the Internet, some food allergy cookbooks, and good advice from other autism moms who had already put their kids on the GFCF diet, we took away the glutens and caseins that were potentially harmful to Alex’s system. Dr. William Shaw’s book Biological Treatments for Autism and PDD helped me to understand that glutens found in grains and caseins found in milk products are proteins that can act as opiates (like morphine) in children who have digestive issues, such as leaky gut, that allow these food products to go to the brain improperly processed. Since Alex often acted “zoned out” when he was little, I suspect this is what happened when he consumed these foods to which he showed sensitivity.

In addition, my research on glutens led me to discover that many people of Irish descent have sensitivity to glutens and do not tolerate wheat well. In fact, many develop celiac disease, which is an inflammation of the intestines that can be controlled by faithfully following a completely gluten-free diet. Since I have Irish ancestors in my Anglo-Saxon heritage, and Ed is nearly pure Irish in his family tree, Alex could have a genetic predisposition to be intolerant of foods with glutens. Although he didn’t seems to have stomach aches when he was little, he often had toddler diarrhea and frequently had projectile vomiting when he was on milk-based formula as an infant. At that time, the pediatrician casually dismissed my concerns of food allergies, but I think he probably was born with those issues.

Fortunately, Alex was quite cooperative about going on the GFCF diet, and his willingness to eat a wide variety of fruits, vegetables, meats, and seafood that were allowed on the diet made this transition much easier for all of us. We suspected that the diet made him feel better because if new food were offered to him, he would ask, “Does this have wheat or dairy in it?” Although his most recent food allergy tests from last spring indicate that he no longer shows sensitivity to glutens and caseins because he has refrained from eating them for over a dozen years, we have kept him on the diet. Any time he has accidentally consumed something with glutens or caseins, we saw behavioral issues that made us realize that he needs to stay on the diet. Recently, perhaps in some sort of young adult rebellion or just curiosity, he has sneaked off and eaten some dinner rolls one evening and doughnuts another. Both times, he went through an emotional roller coaster where he went from being very agitated and hyper to angry and aggressive to feeling guilty and sad, sobbing uncontrollably. Needless to say, we concur with the recent Penn State research that Alex has benefitted from being on the gluten-free and casein-free diet. Now if we can just make sure to keep any of the offending foods away from him and make certain that he doesn’t eat them, we won’t have to see how those proteins negatively impact his behavior.

“Why spend your money on food that does not give you strength? Why pay for food that does you no good? Listen to me, and you will eat what is good. You will enjoy the finest food.” Isaiah 55:2

Greatest Inventions

This week, I will administer our Indiana state proficiency exams, the ISTEP+, to my seventh grade students. Every year my colleagues have me tell the story of a student I had in class years ago who apparently misread the writing prompt for his essay, which we still find amusing years later. The students that year were to write about the greatest invention in history. As I walked around the room to monitor the students’ progress, I noticed this student had entitled his essay “My Hamster.” I gently suggested that he re-read what the assigned topic was, and as he did, his eyes widened, and he began erasing what he’d written and hopefully chose a more appropriate topic. [Sadly, under the more stringent rules the state has given test proctors this year, I wouldn’t be able to help that poor kid.] Yesterday, I ran across an entertaining blog entry from Look At My Eyes entitled “The Greatest Invention for the Autism World EVER???” [Click here to read this blog entry.] No, the greatest invention wasn’t a hamster, but the electronic timer instead, which holds a special place in Alex’s heart, as I’ve written in previous blog entries. While I’d be hard pressed to choose the greatest invention for the autism world, five items—in addition to the beloved electronic timer—come to mind.

Betty Crocker gluten-free yellow cake mix makes my life so much easier. Before this wonderful product came on the market last year, I had to bake all of Alex’s cakes from scratch. Gluten-free cakes that have a good texture and flavor require measuring three different gluten-free flours (tapioca, potato starch, and rice flours) and adding the proper mix of xanthan gum to help the flours stick together without gluten along with baking powder and/or baking soda to make it rise. With Betty Crocker’s GF cake mixes, I just dump the mix in a bowl with three eggs, a stick of Fleischmann’s unsalted margarine, a little water, vanilla extract, and orange extract (my own addition that Alex really likes), mix with the electric mixer, pour in a pan, and bake. Not only is it easy to make, but also topped with Duncan Hines vanilla frosting, this is one tasty cake.

I’d personally like to thank the creator of the Game Show Network for entertaining Alex for hours on end. Between Family Feud, Lingo, Deal or No Deal, Press Your Luck, and others, Alex has not only enjoyed watching these shows, but he’s also learned some information and strategy by playing along at home.

I don’t know what Alex would do without his beloved calculators. He has calculators of every shape, size, color, and format and can spend hours punching in numbers. Of course, his love of math and numbers has shaped his affection for these handy gadgets. When he was a toddler and had to sit through faculty meetings with me, I’d put him in his stroller and hand him a calculator to play with, and he never let out a peep, fully amused by punching the buttons. Early on, I guess I knew how to keep him happy and calm in such a simple way.

If it were not for melatonin, we would have spent many years sleep deprived. When Alex suddenly developed insomnia around age five, he would wander around the house and watch middle-of–the-night tv, such as CNN. Of course, we couldn’t allow him to be up without our supervision, so we had to give up sleep, as well. The first night he started taking melatonin under the guidance of our doctor, he easily fell asleep at a reasonable hour and slept soundly through the night. I really suspect that he did not have enough natural melatonin in his system, and this supplement provided what he needed. Fortunately, he has overcome this problem and can sleep without taking melatonin anymore, but for those years he couldn’t, I’m thankful he responded so well to this supplement.

For Alex, I think the greatest invention is the computer and the Internet. He has learned so much by playing games, doing Google searches and subsequent research, and typing information into spreadsheets and word processing programs. As I mentioned in a recent blog entry, he is currently fascinated with a website called “Ask God,” and now he begins every morning by consulting with this artificial intelligence site. He shares his worries with “God” about rising gasoline prices, and apparently, he has some good sense about not sharing his identity online. Last week, “God” asked him his name, and he typed in [game show and talk show host] Regis Philbin. Ed and I thought that was pretty clever of him. In addition, I’m pleased that he knows the best way to start the day is by having a conversation with God; now if we can teach him that prayer is better than the Internet, we’ll have taught him well.

“Sing to Him, sing psalms to Him; Talk of all His wondrous works!” Psalm 105:2