Held Up

 

The month of June hasn’t turned out as I’d planned. After over a year of not dealing with thrush, poor Alex has had one of the worst bouts he has ever had. Not only does the fungal infection make his mouth and throat sore, but the illness also causes him to develop terrible dandruff and acne. Besides the physical effects, the yeast overgrowth brings on brain fog that makes him less mentally sharp, especially when it comes to verbalizing what he wants to say. On top of that, we discovered that his lithium medication levels were too high, causing an increase of tremors that make using his hands extremely difficult. Since he had been doing quite well for many months, I was eagerly anticipating summer so that we could relax and enjoy activities together as a family. Instead, we have held up on doing things until Alex feels better.

Rather than going to restaurants, one of Alex’s favorite things to do, we have been literally spoon feeding him applesauce, coconut milk yogurt, eggs, and baby food. Our blender has been put to good use making fruit smoothies and rice milk ice cream shakes that soothe his throat and fill his tummy. Because he has lost some weight on his already slim frame, we have had to encourage him to eat every meal and nutritious snacks to ensure that he doesn’t become too thin. Even though he doesn’t feel good, he has been a trouper about eating what appeals and even trying to eat the foods he normally enjoys that apparently doesn’t taste good right now, a side effect of the thrush.

At the end of May, we took him to his family doctor because we were concerned about his decreased appetite, weight loss, and suspicion that thrush was behind his symptoms. His doctor gave us a prescription for seven days of the antifungal Diflucan to treat thrush and wanted us to return in a few weeks after he returned from vacation. He also expressed concern about the lithium level shown on a recent test, which we assured him we would discuss with the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety.

After valiant attempts to contact the nurse practitioner by phone and email yielded no response, despite my insistence with her staff that we needed guidance regarding the lithium medication, we prayed and decided that we needed to do something to prevent lithium toxicity. With Alex’s doctor out of town and his nurse practitioner not communicating with us and unable to see him until the fall, we lowered his lithium dosage on our own. Thankfully, we saw no negative side effects, and his tremors seemed to decrease a bit with the medication reduction. While we were concerned about making this change without medical guidance, we believed it was the right thing to do.

This week, Alex had an appointment with his doctor, who was pleased that he had not lost any more weight and was showing signs of improvement. However, he agreed with us that the thrush is not completely gone, so he prescribed another round of Diflucan, this time for two weeks. When we explained our dilemma with the lithium dosage, he completely supported our decision, which was reassuring. In addition, he ordered a blood test to check the current lithium level that day and told us if the level was still too high, he would reduce the dosage again. We were pleased that he was taking charge and had a good plan after we felt abandoned by the nurse practitioner. Moreover, he wants to see Alex again in three months––or sooner if needed––to check his weight and overall health. Needless to say, we were happy with how well this appointment went, especially since Alex was very cooperative, feeling content and confident that we have a family doctor who genuinely cares about Alex and his health.

Later that afternoon, the doctor’s office called with the results of the lithium test (which was sooner than expected) to let us know that with the medication reduction we had made, the lithium level is now in normal range. Consequently, no further medication reductions are needed at this time. The good test results confirmed for us that we had done the right thing with God’s guidance and that Alex’s doctor is on top of things, which is important to us. While one professional had let us down, another had stepped up and made sure that Alex received proper care. Once again, God had shown us that He is always faithful and provides for our needs.

On Friday evening, we attended our first concert of the summer, a local church band playing in our downtown park plaza to raise funds and collect food for needy children in our community. Clearly feeling better than he has all summer, Alex enjoyed every minute of the concert, smiling, swaying to the music, and clapping his less shaky hands. While most of the songs were upbeat popular music, the band also played two contemporary Christian tunes. As they sang of God’s love, Alex’s expression can be best described as beatific. Sometimes I think he is closer to God than most of us, strengthened by a faith that allows him to be confident, in spite of autism, knowing that everything will be all right in the end. Watching his eyes shine and his smile spread across his face, I was reminded that, in spite of illness and autism and disappointments, God always upholds us and takes care of us, and, indeed, everything will be all right.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Father's Day

 

[I wrote this essay about Ed and Alex's relationship last year, and everything still holds true today. Ed's unconditional love for Alex and me has kept our family strong through trials and triumphs through the years. He and I have worked together as a team to make Alex's life better, and his steady calmness keeps me grounded. Patiently listening to my concerns, observations, and research summaries, Ed always supports me and assures me that he completely trusts my judgment. His encouragement in the midst of difficult times keeps me going; he helps me become all the things I am not by nature: brave, patient, and assertive. Of the many blessings in my life, by far one of the greatest is my husband, Alex's father.]

Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimaginable responsibilities. After more than two dozen years of watching Ed rise to the challenges of raising our son with autism, I am amazed by the patience he has developed, the strength and calm he exhibits that make me stronger and calmer, and the unabashed pride he takes in even the seemingly smallest of Alex’s achievements. Through the good and the bad and even the horrible times, Ed’s devotion to Alex and me has remained constant and has even become stronger with time, and for that, I am truly grateful.

I’ve heard it said that the best thing a father can do for his children is to love their mother. Alex witnesses every day how much his dad loves me through his thoughtfulness, respect, and affection. Moreover, Ed also expects Alex to treat me the same way, often reminding him, “Did you tell Mommy thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has also held Alex to high expectations. While my natural tendency would be to mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows that he needs to learn how to do things on his own. For example, if Alex needs to wipe his face after eating, I grab a napkin and do it for him. Ed, on the other hand, patiently gives Alex directions, telling him to pick up the napkin and instructing where he needs to wipe his face and praising him for doing a good job. Similarly, he expects Alex to pick up after himself, whereas I would just come along behind him and put his things away for him. However, I won’t always be around to wipe Alex’s face or to pick up his belongings for him, so it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I watch the two of them together without their being aware of my presence. Looking out the kitchen window, I have seen Ed patiently teaching Alex in the backyard how to throw or kick or catch a ball, encouraging him, no matter how many times Alex had to try before he could do it himself. When he finally mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s face matched his own, beaming with happiness and pride, as did mine watching from the window.

Sometimes I eavesdrop on their conversations and find the give and take amusing. Since speaking is so difficult for Alex, we hang on his every word, even when we have to ask him to repeat or clarify what he has said. I know that Ed savors his conversations with Alex because for many years we weren’t sure if he would ever be able to say more than a few words at a time. As they chat about baseball and jazz and the stock market and other interests they share, they thoroughly enjoy each other's company and appreciate what the other has to say.

Because children never fully appreciate all their parents do for them until they have children of their own, Alex may never realize all of the things his dad does for him. From being Alex’s personal chauffeur to cutting up his food into bite-sized pieces to helping him get dressed and all the other tasks most twenty-four-year-old young men can do without their father’s help, Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that he can always depend upon his earthly father, Alex has no doubt that he can completely trust his heavenly Father. In fact, Alex’s perception of God as being smart and funny probably comes from his attributing these qualities to his dad. However, he rates Ed as being in the high ninety percentages in these two areas, but he gives God 100% rankings in the intelligence and humor categories, noting that only God is perfect. Indeed, Alex is right about God’s wisdom because God knew exactly what kind of father Alex would need to guide him on the less traveled road of autism and gave him Ed. How blessed I am to be the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a pleasure to have children who are wise.” Proverbs 23:24

What I Am Going to Do

 

In the spring, I made a life-altering decision: this would be my last year of teaching. After thirty-three years of teaching middle school English and working with fantastic fellow teachers, I knew the time had come, just as my retired teacher friends had told me I would know. Although some of my friends and colleagues were surprised by the seeming suddenness in my early retirement plans, for months, God had shown me in various ways that I had finished with this stage of my life. After prayerful consideration, heartfelt conversations with my family, and financial calculations, I knew I was ready. Consequently, I have been completely at peace with finishing my career and looking forward to the future. After making my decision official, I never had even a twinge of regret or wistfulness, which confirms that I am doing the right thing at the right time.

What surprised me, though, was the question that many people asked me once they heard of my retirement: “What are you going to do?” I suppose, since I am retiring at the earliest eligible age, this inquiry makes sense. However, my impression of retirement was that it meant no longer having to do something. Because the question was not one I had anticipated, I didn’t really have a good answer. Moreover, I realized that for the first time in my life I did not have a detailed, organized plan, and I didn’t have alternate plans in case my original plan didn’t work. Amazingly, I was fine with that, which is totally out of character for me. Consequently, I knew my decision was guided by God’s plans and not my own.

I didn’t need to think about my future plans for long because the three people who know and love me best had ideas for me immediately. My mom, a retired teacher herself, is thrilled with my decision and suggested that now I will have time to take my blog entries and edit them into a book about autism. That is a project I have mulled for a while and will definitely take into consideration. My husband noted that now I will be able to get up and make breakfast for him every day. I think he was kidding; if not, he will be sadly disappointed. However, since he wholeheartedly supports my decision, he may be the recipient of donuts from my early morning trips to the bakery. Perhaps the most pleased by my retirement plans is Alex, who excitedly told me, “We can watch Price Is Right together every morning!” Now, that’s a plan I can embrace!

Aside from the suggested writing, cooking, and watching television, I will have time on my hands to fill. Those concerned that I will be twiddling my thumbs or eating bon bons in my free hours need not worry. What am I going to do? I am going to take care of Alex, just as I have for the past twenty-five plus years. What I have realized in the past several weeks is that only a few people who know our situation well understand what taking care of Alex truly involves. Because I have chosen to focus on the positive and tried not to complain about life with autism, I may not have presented a clear picture of what being a caregiver to an adult with autism actually requires. I suspect if people only knew, they would be less likely to ask me about my retirement plans.

So, what am I going to do? This summer my plan is to help Alex get well. Currently, he has probably the worst case of candida overgrowth he has ever had with cheilitis and thrush irritating his mouth and throat. A month ago, he had a virus that affected his appetite, so we have spent the last several weeks encouraging him to eat, trying to find things that appeal to him. The thrush complicated the situation by making even his favorite foods taste bad, and his sore mouth and throat makes eating painful. Consequently, our already thin boy has lost weight, which is concerning. His primary care doctor has prescribed an antifungal medication, which seems to be helping, but from past experience, we know that candida is hard to control, and it will take time before he’s well. We have an appointment to see his doctor again in a few weeks and are hoping that he will be better by then.

In the meantime, we know that he needs proper nutrition to heal, so we constantly encourage him to eat healthy foods. Compounding this issue is that we recently discovered that his lithium level is higher than it should be, leading to tremors that make eating with a spoon or fork nearly impossible. To make matters more complicated and frustrating, the nurse practitioner who oversees his medications has been incommunicado, and despite my best efforts to contact her, we have been put in a position of making medication decisions ourselves. Fortunately, Alex is responding well to the changes we made based upon research, but we never should have been put in this position in the first place. Nonetheless, we are literally spoon feeding Alex ourselves five or six times a day, just as one would an infant. Thankfully, he is also responding well to our coaxing him to eat, and we are seeing improvements in the variety and quantity of foods he will eat.

Along with the actual acts of caregiving, I find myself engaged in constant prayers not only for Alex’s healing but also for guidance so that we know how best to help him. Once again, I find myself having to develop my faith and patience as I wait for God to reveal His plans and to heal Alex. So what am I going to do? I am going to wait on the Lord and keep myself busy taking care of my precious boy. While that may not sound like an exciting way to begin retirement, I know that is what God wants me to do and will help me to do, and I have no doubt that the rewards will be absolutely worth the effort in the end.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Planning and Preparing

 

Yesterday I read a terrific blog entry by Phoebe Holmes on Scary Mommy entitled “Special Needs Parents Have an Extra Special Set of Parenting Skills.” [To read this post, please click here.] In this post, she describes how special needs parents are always prepared for anything, carrying tissues, assorted Band-Aids, pain relievers, and snacks. In addition, she explains that special needs parents always know where restrooms and exits are located. As she humorously suggests, “Follow us in case of fire––we’ll be the first ones out.” If things fall apart, our kids may fall apart, so we must always be overly prepared for any likely or even unlikely situations that may occur.

Fortunately, planning and organizing come easily to me. My colleagues jokingly refer to me as Pam-o-dex because I can quickly find any information someone might need. My husband has dubbed me the family E.P.A., or Executive Personal Assistant, because he and Alex rely upon me to have appointments and family outings arranged with every detail planned. This includes scheduling appointments that don’t conflict with Alex’s various therapy sessions or interfere with his beloved The Price Is Right or Jeopardy. Whenever possible I’m also careful to schedule appointments first thing in the morning or right after lunch in hopes of minimizing time spent in the waiting room.

In addition, to make sure we have any information that might come in handy, I have a red medical folder for Alex that I take with us anytime he has a doctor/dentist/optometrist appointment or goes for medical tests. In this folder, I have a copy of his legal document authorizing Ed and me to have rights as his medical power of attorney, a list of all his doctors with their addresses/phone numbers/fax numbers, a list of the medications along with the dosages he is currently taking, copies of his most recent lab tests, and dates of upcoming appointments so that I don’t accidentally schedule two things at the same time. Also, I carry his insurance cards in my wallet along with his state identification card. Clearly, the two years I spent in Girl Scouts taught me to “Be Prepared.”

Now that summer is here, we’ll be attending outdoor concerts and old-time baseball games at our local parks. This also puts my E.P.A. skills to the test, making sure that I bring everything we’ll need. Of course, we’ll need drinks and snacks that I’ll pack in our soft-sided cooler, along with napkins and wet wipes. One of the best things we ever bought was a lightweight folding cart, the beach caddy deluxe, from Bed Bath & Beyond (and I used a coupon to save 20 percent on the price). We put our portable chairs in it so that we don’t have to carry them, and the cart also holds our cooler and jackets. Alex loves to push the cart, so that makes getting to the park with all our stuff even easier. Also, I bring along Superband insect repellent bracelets that use natural substances instead of chemicals to ward off mosquitoes. (I buy ours in the garden section of Walmart for about one dollar each; Amazon also carries them.) As long as Alex has something to eat and the bugs don’t eat him, he is generally a happy camper.

Since school is out, we’ll be able to enjoy more family outings, which means that I’ll shift from lesson planning to activity planning, and I’ll trade my schoolbook bag for a snack bag. I’m looking forward to our summer adventures with my guys, who know they can trust me to have all the details arranged in advance. After all, I am the E.P.A.

“May He grant your heart’s desires and make all your plans succeed.” Psalm 20:4