Never Giving Up Hope
The experience of belonging. So simple but incredibly important.
Posted May 23, 2011
Twelve years ago when my son was diagnosed, he did not speak. He could be aggressive and had many severe behaviors. His loss of eye contact and focus made it difficult for him to learn picture communication, so we moved to sign language. I remember clearly his first sign was for "more". So basic...the need to be able to ask for "more water" or "more food". But it was communication. By the time he was 4 years old, he was able to speak in 4 word sentences. While I may not have appreciated the progress at the time, it gave us something to hold onto to...it gave us hope.
Five years ago my son continued to regularly tantrum and elope from the typical classroom. After an adverse reaction to medication in 3rd grade, I feared we would never get him back to where he was. The doctors offered us no way to get him back except to wait. Pray. Hope he would get better while we watched him suffer.
Four years ago his behaviors started to decrease in school. Yet we still had many hard days and calls from the teacher. Despite the difficulties, things seemed to slowly get better by the end of 4th grade. He learned how to play the drums. He was getting good grades, and we could see that he could function well in an inclusive setting for the long term. Hope really started to emerge.
Tonight I watched my son play his drums in the 7th grade band concert. He independently went to the band room when we arrived and later took to the stage with the rest of the children. Even though his regular band director was absent due to illness, and there was a substitute director, Tyler handled the change as if it were not an issue. In my eyes, he was nothing short of amazing.
And once again, I am reminded of the miracle of his progress. The simple act of a band concert brought tears to my eyes and emotions of hope to the surface. It has been happening often this year but I am surprised every time it happens. I very much know how fortunate we are. My son works so hard to keep it together in school, but we can never assume the progress will just come to him. Hope, yes. Assume, never.
Last month he stood strong at his first IEP meeting. I was nervous for him but he did it. We discussed his challenges but we also discussed his strengths. The reading teacher complemented him on his independence and hard work. His pre-algebra teacher told me she wished all students were like him. For the first time in his life, he is able to do his science and math homework by himself without a parent. In fact, many days, he has his homework completed on his own before he comes home from school. He is doing well academically. He has his autism friends and loves school.
And I am so grateful. I know it was not always like this. He was not always high functioning. Believe me....12 years ago...even 4 years ago... I had many hopeless days. I kept a journal and read it today. From 2003, I wrote, "Please God...heal my son." But the healing did not come quickly. I could not see it. Things were sometimes unbearable in those dark days. Having to quit work to care for my son. Tantrums. Calls from teachers. Fighting for services. Facing the unknown on a daily basis was daunting.
But the past 2 years have given me such hope. When I went to the concert tonight, I thought of other parents. Parents of children with autism and other disabilities, just like me, who also face the unknown. Maybe they too felt the hopelessness that can rear its ugly head on any given day. I want you to know to never give up hope. I have been there. Things can get better. Even though it can take a really long time to see the progress, it can happen.
Tonight I cried seeing seeing my son on stage...hearing his tympanis...watching him have fun with the other kids and playing the drums as if it was so natural. It is not the first time I have seen him perform. But it was perhaps the first time everything seemed to fall in place. From the time we walked in the door, he moved confidently through the school. He was sure of himself. And I was equally confident in him and his independence.
When you face the unknown, the joy of witnessing a huge accomplishment can bring you to your knees. It is the feeling of finally letting yourself feel happiness and allowing yourself to dream again for what the future holds for your child. Positive dreams.
Sure, I am still worried what will happen when my son becomes an adult or even what might happen next week. I know the reality of the situation. Truth be told, I am really scared. But I don't give up hope for where he will be in another 5 years. He deserves my hope, and he will get it. Like the past 14 years of his life, I will give all I have to help him be independent and happy. I will never give up.
So tonight, I am simply grateful for the experience of hearing my son play an instrument. I am grateful that he can work with a group of children and together create beautiful music. He can experience the wonderful feeling of belonging. So simple but incredibly important.
Sure a band concert is a small event in the grand scheme of things. But to me, it is as big as the universe. And I am filled with hope as we continue this journey, at least for this moment. The beat goes on.