One of my favorite songs is "The Mountains Win Again" by Blues Traveler. The Bible says if you have the faith of a mustard seed you can move mountains, and there mine stands....mocking me. We have just done everything to help Cotton, all the "right" therapies a couple of not so "right" therapies, we have struggled, and pushed, endured, and prayed. I have watched every single one of his friends with autism learn to speak, ask questions, and eventually even have somewhat of conversations. While we still struggle with just the fundamentals. I always feel like a failure when it comes to Cotton, like somehow, someway, I missed the memo. For us, autism, does not explain everything. I think one day their will be a genius geneticist that discovers a gene that explains it all (there are plenty of disorders associated with hypopigmentation, so I would not be surprised.) For right now, I suspect that Cotton actually lies somewhere between autism, and angelman's syndrome. One day science will tell.
I was at my pre IEP meeting the other day, and the kids from the class came in. I know them all well, so they were all saying hi, to me and telling me about their latest adventures. One child in particular had really made tremendous progress. So when they left I mentioned to the group ( the 8 people involved daily in helping Cotton) that I was really amazed at how well E was doing. Cotton's TVI (teacher for the visually impaired) looked at me earnestly and said, "you know that you are dealing with more than autism." She said it so compassionately, I immediately felt the weight of failure on my shoulders, release, and subsequently punch me in the stomach. I am not sure why, but it was almost like she was saying that it was not my fault. I didn't realize how much I needed to hear that. I am not sure I realize how much I need to believe it. It is hard to admit that I feel like I have failed Cotton, seriously when I look back we left no stone unturned, and we are and will continue to press. But, just having someone confirm that this is as difficult as it is, was just nice.
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About Me
- burgiboogie
- I blog about autism, albinism, my three "active" boys, and life a military family.
4 comments:
I'm so sorry to hear that you are down on yourself. But I know it is easy to do. It has sounded to me for some time that Cotton is doing amazingly well with his talker. I'm so envious of that window you have into what he knows and what he is thinking! Anyway, I just wanted to say 'Hang in there!' You guys have an amazing family!!
I remember having a behavioral therapist look my husband and I in the eye and say there is more going on with Madison than just vision caused by albinism. You would think since she was telling me that my child had something "wrong" I would have been upset but instead I had a sigh of relief because I didnt feel crazy. I felt like finally someone saw how hard things were and that madison wasn't like the other kids and there was something more to it.
Hang in there. You are a wonderful mommy and sometimes it can be hard especially with a special needs child. Praying for you!
I know the feeling, but it's funny because I always feel that Cotton is so, so far ahead of my boys!
I know we shouldn't compare our kids to others, but every once in a while it just hits you out of the blue.
This post just broke my heart. I know exactly what you and Casey mean - sometimes you need to be validated that things are hard and be reminded that it's not your fault. I think moms especially take it all on their shoulders! I'm glad to hear that not only did you release that pressure, even for a moment, but that the IEP meeting and new touchscreen gave you a much-needed success! You and your family are in my thoughts.
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