воскресенье, 14 апреля 2013 г.

Never Giving Up Hope

By Kym Grosso

Optimism is the faith that leads to achievement.
~Helen Keller

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 four years old, he was able to speak in four-word sentences. It gave us something to hold on to... it gave us hope.
Five years ago my son continued to regularly melt down and escape from the typical classroom. After an adverse reaction to medication in third grade, I feared we would never get him back to where he was. The doctors offered us no option but to wait and see. Pray. Hope he would get better while we watched him suffer.

Four years ago his behavior started to decrease in school. Yet we still had many hard days and calls from the teacher. Things seemed to slowly get better by the end of fourth 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. We started to really hope.

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 complimented 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. 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.

Tonight I watched my son play his drums in the seventh 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, 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. It has been happening often this year but I am surprised every time it happens. I 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.

And I am so grateful. He was not always high functioning. Believe me... 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. Meltdowns. Calls from teachers. Fighting for services. Facing the unknown on a daily basis was daunting.

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.

When you face the unknown, the joy of witnessing a huge accomplishment can bring you to your knees. You can finally let yourself feel happiness and allow yourself to dream about your child's future.

Tonight, a band concert brought tears to my eyes and strengthened my hope. I am grateful for the experience of hearing my son play an instrument. I am grateful that he can work with a group of children and create beautiful music. He can experience the wonderful feeling of belonging. So simple, but incredibly important. It may be 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.

Sure, I am still worried about what will happen when my son becomes an adult or even what might happen next week. Truth be told, I am really scared. But I don't give up hope for where he will be in another five years. He deserves my hope, and he will get it. I will never give up. The beat goes on.

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