As I have discussed in the past, our youngest son has been deeply entrenched in one of his regression periods of his unique developmental cycle. It is probably the longest regression that we have experienced. Because my husband and I are both problem solvers by nature, we strapped on our big people pants and did what needed to be done. As discussed previously, we met with the neurological team to touch base and bring them up to speed. Additionally, we enrolled him in out-patient occupational therapy (OT) bi-weekly and speech therapy weekly. As usual, we stayed in close contact with his support team at school. We questioned, nagged, and supported as needed.
After the fall parent/teacher conference, my husband and I looked at each other and pretty much threw up our hands and said "Okay. What will be, will be." Everyone involved in his care, including ourselves, couldn't account for the longevity of this regression. We were all frustrated. He was impulsive, getting out of his seat; wandering around the classroom; forgetting his books, homework, and personal belongings. He only passed reading by one point. He had earned a C in science but miraculously an A in math. His teacher, a long time veteran of the classroom, looked at us and said "I love his smile. I love his personality. He's so very sweet. I simply do not know what to do with him or for him." Wow! Where do you go from there? We offered suggestions and feedback but knew in actuality that none of us knew what to do with him and for him at this time. In the past, we have been a resource for his teaching team when they encountered roadblocks with his progress. We were at the point where we had nothing new to offer.
As we left the conference that night, we felt helpless. We went out to dinner for some quiet time as a couple and discussed where we were with our son. Over dinner, we came to the consensus that we were giving him everything that we had to give. He had our time, our energy, our focus, and our resources. We had him in the care of one of the best neurologists his hospital had to offer. They had touched base with outside resources to ask for suggestions and insight. No one had anything new to offer. Everyone on his team at the hospital, at home, and at school truly loved him and wanted the best for him. Everyone was giving him 100% of what they had to offer. It seemed to have very little impact. We were all quite frustrated. Over dinner, my husband and I decided that we would consider this year a draw. If we could hold him to his current level of progress without further regression or loss of skills, we would feel successful. We would be satisfied with our efforts. When I went to bed that night, I earnestly prayed "God, your will be done. I can't do more than I am. I have nothing else to offer. I'm not big enough for this. I need your intervention." Through the days that followed, that prayer became the mantra in the back of my mind.
Then, when we least expected it, we started to notice change. Progress. Slow at first. Painfully slow. But progress.
He started bringing home his personal belongings. That is HUGE! He started using his reminder checklist at school that I had created for him. As a result, he started remembering his homework agenda, papers, and books. That was SUPER HUGE! At home, he started writing. Feverishly some days. He created his own book full of fables. He was writing plays and stories that he would act out with his stuffed animals. Soon he was coming up with witty comments and jokes. Language seemed to be very interesting to him and was becoming a part of his play and everyday activities. Right before Christmas break, we had our first clear sign that things were taking an upward swing. In one week, he brought home an A+ on a math test, an A on a science test, and two Cs on reading tests. These were significant improvements.
His speech has not changed. Some days there is no stuttering, blocking, or hesitation. None. He has smooth speech. Other days, he can't get out a single sentence or phrase without blocking and stuttering. He has also started developing some secondary behaviors. Secondary behaviors are behaviors that develop as an instinctive attempt to cope with stuttering and blocking. He has started grimacing as he attempts to talk. One a very bad day, he will stomp his foot or kick his leg like he's trying to physically jump the words out of his body. The most painful secondary behavior to watch is when he uses his hands around his mouth. Some days it looks like he is physically trying to pull the words or funnel the words out of his mouth. This area of development has not improved but that is no surprise. Speech has consistently been his biggest area of delay. Improvement in this area would be Earth shattering. (Still, a girl can hope.)
As we return to school and work in a few days after the long holiday break, I am going to embrace my new mantra. God this is too big for me. I am not strong enough. Your will be done. In your time Lord. I will continue to do all I can for him and his support teams but I also recognize that his needs are greater than me and my abilities. I will embrace the embers of hope that we have been given. Hopefully, they can be fanned into a flame that lights the way to greater progress.
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