Individualized Support Plan

A week and a half ago, we met with Alex’s case manager and behavioral therapist for his regular quarterly meeting. As I have mentioned in previous blog entries, those who receive support services from the state meet every three months with their teams of professionals to go over progress and goals and to discuss any concerns. We have been blessed with outstanding people who work with Alex to develop his skills and who truly care about our family. The primary topic for this particular meeting was to go over Alex’s individualized support plan, which is similar to an individualized educational plan (IEP) developed by special educational personnel for special needs students.

Last year, Indiana’s Bureau of Developmental Disabilities Services implemented Person-Centered Planning that requires gathering a great deal of information in hopes of providing better services for individuals with developmental disabilities. [To read my April 22, 2018, blog entry, “Person-Centered Planning,” explaining this process, please click here.] Although Alex’s case manager has only been working with us for a little over a year, she has done an excellent job getting to know him and collecting the details needed to develop this comprehensive report. Currently, Alex’s person-centered individualized support plan is 32 pages long and will likely increase with the additions we made at our last quarterly meeting.

Prior to our meeting, his case manager sent me a draft copy of the plan, which I read and summarized for Ed, who trusts my judgment. Essentially, Alex’s goals are to continue progress in the following areas: improving his communication skills, engaging in community activities, developing coping skills to deal with anxiety, and achieving greater independence. Considering that autism impacts his language, social, and motor skills, as well as anxiety, these goals make complete sense and are worthwhile pursuits.

Reading the positive statements in the document noting Alex’s achievements and progress over the past few years was quite encouraging. However, his case manager wisely worded these comments, noting that continued success requires keeping vital supports in place, such as ongoing behavioral therapy and music therapy. Those of us who know Alex well recognize how valuable his therapists are to his continued progress toward these essential goals.

After going through the draft copy of the plan prior to the meeting, I made notes regarding changes or additions that might give more insights into Alex and his current interests and concerns. For example, the report noted that Alex’s hardest time of day was between 9:00-10:30 A.M. While this was true several years ago because his bedtime medications had worn off and the morning doses had not yet taken effect, this is thankfully no longer true. In fact, Alex has improved so much that he only takes two medications at bedtime and awakens pleasant natured. Fortunately, he doesn’t have any time of day that is difficult for him, and we are grateful for this significant progress.

However, he still struggles with sensory issues that can trigger anxiety. For example, because his hearing is quite acute, noises can startle him, and he can become overwhelmed by loud music or sounds. If we are out in public, and volume annoys him, we may have to leave. In addition, he has had difficulty recently with weather bothering him, especially rain. I have read that dogs don’t like to go out in the rain, not primarily because they don’t like getting wet, but because their ears are sensitive to the sounds of raindrops. Similarly, I suspect that Alex hears the sound of rain amplified to a level that makes him prefer to stay indoors. With this in mind, we asked his case manager to add the following to his report: “Inclement weather, such as rain, extreme cold, and wind, can bother Alex, due to sensory issues. He also has anxiety about thunderstorms and tornadoes.” Hopefully, these added details will enable others who work with Alex to understand his weather-related concerns.

Additionally, we requested that a few more details be added to the “About Me” introduction to the document under the subheading “What people like and admire about me.” While his case manager had done a good job of explaining tasks Alex does to help around the house, we wanted the report to describe Alex’s positive traits and personality a bit more. Trying to be objective, I considered what other people have said and noticed about Alex. With these observations in mind, we asked that Alex be described in the report as pleasant and amusing as well as noting that he likes to share interests with others and strives to do his best. His behavioral therapist agreed with these descriptors of Alex, and his case manager confirmed the value of including these details in the report.

Finally, in the “Social and Spirituality” section, we felt that addressing Alex’s faith in God was necessary to understanding him. Although church services can prove overwhelming to Alex with sensory issues, such as the vibration of the church organ and the echoing sounds of a sanctuary, he has developed a strong personal faith reinforced through our religious teaching at home. Every night, he asks God to bless a long list of people who are important to him––from family and friends to his support team to former Chicago Cubs baseball player Sammy Sosa. Consequently, we requested that his report include the following statement: “Faith is important to Alex, and he regularly says bedtime prayers.”

Even though Alex’s individualized support plan can be daunting to read, especially as it details the obstacles autism has imposed upon his life, the positive tone regarding the progress he has made with time and support offers encouragement for the future. As we keep working to develop his communication, social, and motor skills, as well as to develop his coping skills and work toward greater independence, we continue to pray for God’s healing. Furthermore, we hope that someday Alex will no longer need a support team or an individualized support plan, knowing that with God all things are possible.

“Jesus looked at them intently and said, ‘Humanly speaking, it is impossible. But with God everything is possible.’” Matthew 19:26

Resolutions

 

As 2015 came to a close this past week, many people made New Year’s resolutions for 2016. This concept of promising to do better in the future engages many people, even though statistics show that most do not follow through on their good intentions. In a Forbes article entitled “Just 8% of People Achieve Their New Year’s Resolutions. Here’s How They Do It,” writer Dan Diamond quotes statistics from a University of Scranton study that shows more than 40% of Americans make resolutions, but only 8% are successful in keeping them. [To read this article, please click here.]

According to Time, the “Top 10 Commonly Broken New Year’s Resolutions” include the following: lose weight and get fit, quit smoking, learn something new, eat healthier and diet, get out of debt and save money, spend more time with family, travel to new places, be less stressed, volunteer, and drink less. While all of these seem to be noble goals, apparently sticking with them is no easy task for most people.

From Dan Diamond’s perspective, the problem with New Year’s resolutions is not with the people who make them and fail to keep them but with how they make the resolutions. He offers four tips to making resolutions that can be followed more successfully. The first, “Keep It Simple,” recommends making fewer smaller goals that can be reasonably achieved. His second suggestion, “Make It Tangible,” involves setting goals that are specific and measurable. For example, instead of promising to eat healthier, a person could vow not to eat “potato chips, fries, or ice cream for six weeks.” For the third tip, he offers “Make It Obvious,” which means sharing resolutions with family and friends and perhaps even social media to hold oneself accountable for the planned self-improvements. Finally, he recommends “Keep Believing You Can Do It,” emphasizing the importance of positive thinking and the need to believe in the ability to achieve the goals.

With all of this information in mind, I came up with three resolutions for 2016, despite my inner protests that I have enough to do with just being an autism mom and that I don’t need to put any more on an already full plate of obligations. However, I also know that I’m still a work in progress and can always make improvements. Of course, I avoided all of the top ten list of failed resolutions, some of which don’t apply to me in the first place. Instead, I focused on the scripture from I Corinthians 13:13: “Three things will last forever––faith, hope, and love––“ to make meaningful resolutions for myself.

First, for faith, I will read my daily devotionals on a daily basis. That seems pretty simple and pretty obvious, but often the busyness of many days causes me to forget or put off reading what I need to know on a daily basis. Catching up on weekends by reading six or seven devotionals just doesn’t seem to have the same impact, and even worse is when I get so far behind in my reading that I am quickly scanning a month’s worth of devotionals more with the motivation of just getting done than with actually getting something out of the reading. Since putting my devotional book on the nightstand beside my bed with the intention of reading before I go to sleep hasn’t worked, I will read my devotionals in the morning, my best time of day mentally, before I check the more trivial information of weather and Facebook updates on my iPad Mini. Interestingly, today’s devotional scripture from Psalm 5:3 confirmed the wisdom of this decision for me: “In the morning, LORD, you hear my voice; in the morning I lay my requests before you and wait expectantly.”

Next for hope, I will certainly continue to hope that Alex will continue to get better. In the meantime, as I try to wait patiently, I will keep busy with things I need to do so that I don’t obsess with worry about him. As an organized person, I rely upon the lists I make of things to do. Recently, I’ve started writing my to-do lists on my Notes app on my iPad Mini, and I feel satisfaction as I erase each item after I complete each task. However, I also felt frustration whenever I couldn’t complete all the items on my list, and those left behind seemed to taunt me. This week, I decided that instead of to-do lists, I would create “ta-da” lists in which I write down each task I accomplished, celebrating what I did instead of bemoaning what I didn’t get done. For example, the other day I was delighted to complete a list that included doing four loads of laundry, taking care of Alex’s needs (including helping him order books from Amazon with gift cards he’d received for Christmas), cooking a nice meal, and getting my schoolwork done, to name just a few items from my “ta-da” list. By this simple shift in methods, I feel more hopeful each day about what I can accomplish instead of feeling overwhelmed by all I think I should be doing.

Finally, for love—“the greatest of these”––I resolve to make time every day for the people I love and for doing things I love, both of which bring me joy. Yesterday, Ed, Alex, and I went to a university basketball game, and this time spent as a family outing—something we haven’t always been able to do––was precious to us. Watching Alex enjoy himself, even his delight at watching a silly commercial on the scoreboard in which donuts jump into a box, makes Ed and me thankful and happy. (I think those donuts jumping into my mouth would make me pretty happy, too, to be honest.)

In an article in Oprah’s O Magazine entitled “The Very Best Resolution You Can Make This Year,” writer Brene’ Brown emphasizes the need for adults to take time off and play. [To read this article, please click here.] She explains that “time spent without purpose,” as described by researcher Stuart Brown, MD, is crucial to human development, specifically creativity and innovation. Off the top of my head, I thought of simple things I enjoy but don’t always make time to do, including the following: shopping for yarn, watching Partridge Family videos on You Tube, and playing the piano. Sadly, Alex hates shopping with me when I look at yarn; in fact, he would rather do anything than go to Michael’s with me, so this would be a solitary play activity for me. However, he does like watching You Tube with me, and he has expanded his eclectic tastes in music from his father’s beloved Bob Dylan videos to my love of 70’s and 80’s pop music. Soon, I’m sure, he’ll be singing along with David Cassidy and the ever-catchy “I Think I Love You.” Finally, I need to get over my lack of confidence in my limited piano playing skills and let my fingers hit the wrong keys even when I’m not home alone. Fortunately, my guys are patient with my errant notes and even seem to like to listen to me play the piano. If not, they can always hang out in the man cave in the basement and turn up the volume on the television. I may even learn to play “I Think I Love You.”

Armed with my daily daily devotionals, my ta-da lists, and time for fun, 2016 could be my best year yet. Certainly, striving for more faith, hope, and love seems like a worthy goal—resolutions definitely worth keeping!

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19