So you really have to push, and I would suggest hiring an advocate. I did a lot of it by myself but if I had to do it again, I would hire someone well-versed in the law. They are not necessarily attorneys, but they know what the schools are supposed to provide. So they can help you cut through all of that red tape.
Lisa:Â Â Â Â Â Â So now that Seth is twenty-four years old, how is he doing? Does he still have a support network in place?
Robin:Â Â Yes, he now gets county services, and he has been getting them since he was seventeen. He is living in an apartment with three other guys. It is a supportive-living situation, so he has instruction in the evenings. But they do their own cooking, shopping, and washing. He is very independent and takes the bus everywhere. He is still emotionally fourteen or fifteen, so he does rely on mom and dad in many areas. But he has definitely matured.
I don’t know what his potential might have been, and I have stopped thinking about that. I have a child, and he is a wonderful person. He is compassionate and caring, and I can’t compare him to anyone else. He is going at his own pace. I am looking forward to the future to see what that brings.
Lisa:      That’s a great success for you and your husband. Now that your son is an adult, what is your greatest takeaway as his advocate, his mom, and his support?
Robin:  I know it has made me a stronger person, and it has shown that I have to speak out for a lot of things—not just for my son, but for myself. It has also taught me that it took me a long time to realize this was not my fault. From the beginning, I thought that whatever happened was my fault. I wasn’t doing something right if he wasn’t getting along with other children. And you put that on yourself, and it becomes an extra burden. Knowing it wasn’t my fault, I think I have come out of this as a much stronger person and much better parent; these things happen.
I have a wonderful support group of friends and family. My son never wanted friends because they abandoned him after his brain surgery. And now, he has friends and goes to concerts in the park and does all these things. And it is wonderful to see him enjoying life. So my takeaway is there is a light at the end of that very long, dark tunnel, and the clearing starts to happen at different points for different people. You just have to know that at the end of things, things will start to normalize. They may not be perfectly normal, but they will start to normalize.
Lisa:Â Â Â Â Â Â Robin, thank you so much for sharing your story.Â
Kellogg’s book not only includes the inspiration and wisdom she gleaned from her experiences, it also details the resources that she discovered during her journey. A Life Put on Hold: My Son’s Journey with a Brain Injury and the Lessons I Have Learned Along the Way is available on Amazon: http://www.amazon.com/Life-Put-Hold-Journey-Lessons/dp/0692253491
Or visit www.ALifePutOnHold.com.Â
