Sunday, February 22, 2015

Onward and Upward

This past week, we met with Alex’s support team for his quarterly meeting. Since he receives state disability services, these meetings are required every three months to monitor his progress, plan for the upcoming months, and discuss any concerns that have arisen since the last meeting. For these meetings, his case manager, behavioral therapist, music therapist, and a representative from the agency that provides respite care and day programs meet with us. Essentially, these meetings resemble annual case conferences for special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have decided not to declare him legally incompetent at this time and are therefore not his legal guardians, his presence is required at the meetings. As his parents, Ed and I can advocate for him, but Alex ultimately can make decisions about his support program. Fortunately, he is quite content with his team of professionals and the work they are doing with him. Consequently, my main roles in these regular meetings is to play hostess since they meet in our home and to help Alex navigate the process, explaining what others are saying as needed and translating for him when his speech is difficult to understand. With several people in the room at the same time, he sometimes becomes confused as to whether a question is addressed to him or not. Sitting beside him, I often gently tap his leg to let him know that he is being questioned so that he realizes that he needs to provide an answer. At times, questions are directed to me, and I try to respond as clearly as possible to provide an accurate report of Alex’s current state.

To be honest, I felt a little disappointed right after the meeting concluded. Because Alex has made great progress in the past three months, adjusting amazingly well to his new computer class and making significant improvements in his behavior by showing more patience and flexibility as well as managing his anxiety through coping techniques, I anticipated that we would simply celebrate his achievements. While his therapists noted his improvements, they also focused on areas that still need improvement, namely his tendency to talk too softly, his need to be reminded to use manners by saying please and thank you, and his need to develop greater independence in daily living skills. While I value these skills, I’m delighted that he has overcome two huge hurdles that negatively impacted our lives and led to our getting services for him in the first place.

When Alex’s behavior plan was first written two and a half years ago, he desperately needed to improve three areas: physical aggression, property destruction/mishandling, and inappropriate social behaviors. Thanks to therapy, medication, and maturation, Alex has learned to handle his anxiety appropriately so that he doesn’t resort to aggression or throwing things for attention. This improvement has made our lives so much easier, not worrying that he might have an all-out meltdown. Also, his behavior improvements have permitted him to go more places in public because we don’t worry about him behaving badly. Essentially, our lives have changed so much for the better with the disappearance of the physical aggression and property destruction that we could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his social skills, which his behavior plan defines as not invading other people’s personal space, including not touching them or their belongings, covering his mouth when he coughs or sneezes, and not talking too quietly to be heard or not responding at all. Certainly, as he interacts with more people and goes out into the community more, these skills will serve him well. Yet, I thought after he learned to control his angry outbursts, we might enjoy a plateau period where we just rested a bit, grateful that our lives were finally peaceful. Instead, the meeting this week reminded me that we need to keep moving forward to help Alex fulfill his potential. Yes, he is much better than he was, but his therapists believe that he can continue to get even better and will push him to improve his social skills until he masters those, too. They reminded me that “good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past focusing on the weaknesses they discussed and the work we still need to do as his support team and to hear why they believe he can overcome those issues that still linger. They describe him as “smart” and “capable”; they see beyond the typical autism behaviors of social impairment to what he can achieve. Also, I realize that when he masters all these goals, he will need new ones, and at some point, he may not need all the support he is currently receiving. As much as I’d like to rest on the peaceful plateau I imagined, I know that we need to keep moving onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed unending and perhaps even impossible. We wondered if Alex would ever become toilet trained, and eventually he did learn to go to the bathroom independently, which made our lives easier. We wondered if we would ever be able to have a conversation with him because his language skills were so weak, and now we can talk with him, despite some lingering speech issues, and find ourselves amused and amazed by what he tells us. We wondered if we would ever be able to take him out in public and trust that he would behave himself, and now we take him someplace nearly every day, not worried that he will misbehave and enjoy watching how happy it makes him to be out and about in the world. Consequently, I know now that Alex has great potential, and I need to be reminded that he can overcome these difficulties with time, patience, and support.

While I first thought his support team was not fully appreciating what Alex has accomplished recently, I can now recognize that they see him more objectively than I can. As his mother, I focus on what he has done, but his therapists are looking forward to what he can do. For years, Ed and I were unable to find professionals who could help Alex, and now we are blessed with a group who not only understand him as he is but also can envision what he can be with time and intervention. Working with them, we know that we will move onward and upward, not resting on what we’ve already accomplished, but knowing that Alex can, indeed, keep improving, master goals, and reach his full potential.

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.” Philippians 3:12

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