The start

Today I tried to find a blog to read that I could relate to. These days you can pretty much find a blog for anything. I was hoping to find one written by another mother that has a child that is blind with autism. I found plenty of blogs by autism parents but only found one by a mother with a blind and autistic child. It was so nice to read another mothers words, that I really understood. The stories of her son made me laugh and cry because they are so similar to our stories. It inspired me to start a blog of my own. I've had a blog before but I kept it light and only talked about the hard stuff in small doses. I plan to be real this time and to be honest I don't really know what that will look like. I feel the need to really show people what it is like to have autism in your home. One thing I've learned from all of this is that the world is very uninformed about Autism., let alone blindness and autism combined. The spectrum is so wide that it is impossible to know how to help each child. We are still learning how to help Landon and just when we think we have something figured out, he changes on us. It is a rollercoaster ride, to say the least! Along with giving some insight into the unique world that we live in, I hope that this blog can eventually reach another mom like me- a mom that is google searching for a blog that she can relate to.

So to start this off, I'm going to try and do a short version of this blind autism story:

When Landon was 6 weeks old we were starting to worry as he was not looking at us and around that time his eyes started to bounce around and roll so far down that you couldn't see his pupil. We asked our doctor about it and she immediately set us up a with an opthamologist. Within a couple of weeks and different tests at Children's Hospital we were told that he had Leber's Congenital Amaurosis. Apparently Jason and I both carry a rare gene that we did not know about and Landon got both from us. We were shocked. We never would have guessed that our sweet baby would not be able to see our own faces. There was a lot to learn. He was delayed in most areas- as simple tasks, like sitting up, are motivated by sight. He hated being propped up on the couch because it was uncomfortable and he didn't get the perk of having a better view point. He was doing very well though despite the struggles. We were quickly learning that blind children are absolutely amazing and can pretty much do anything, it just might take them a little longer to get there.

At 14 months he had a large list of words that he could say. Things started to change after that. He was using less and less words and was screaming more. By 2 years old he wasn't speaking at all. It was very difficult to figure out what he wanted because he didn't have the luxury of simply pointing to it. He didn't even know if what he wanted was right beside him or 10 miles away. He was frustrated. We were frustrated. At his 2 year check up we asked the doctor if we could get Landon assessed for autism. It took a full year to get a diagnosis. He was for certain on the spectrum. Even though we knew that this was the case, it was so hard to sit there and listen to another doctor giving us yet another life changing diagnosis.

2 1/2 years later and I'm still not used to it. I can honestly say it is harder than I had thought it was going to be. The lows are very low but that makes the highs feel very high. When he is feeling ok he is such a happy, funny and talented little man. He brings us so much joy and I couldn't love him more.

So there's our story in a nutshell and that's all I have for now.

~Esther