Autism As A Whole

My son Chucky has a Facebook page, where he has met many other children with Autism. The page is written and monitored by me. The whole thing started because my page had become all about him and advocating for him. I wanted my space back. I know that is selfish right? I don't care!! Every bit of my world revolves around my children and I wanted something of my own. So, his Facebook emerged.

Basically it is a page where people who were interested in knowing how he was doing and noting milestones could see them. No one can search for him. They can only request him through a friend of his's page. I am very selective about who I accept. My son loves his page. He enjoys reading everyone's comments to him and he really enjoys seeing the pictures of children that are like him. He has made a couple very close friends. This has given him some socialization. He wants to talk to his friends on the computer and he looks to see what is going on.

It is also wonderful for me. I can talk to other Mom's who understand. They know what I am going through and can give me reasonable solutions that they have tried with their angels. Well, I am not writing to justify my son having a Facebook page because I don't really care what anyone else thinks about it. I am not trying to be rude either just honest. My son met a little boy Jake on his page and has been communicating through pictures and their diaries for about six months now. Jake's mom and I are sure to read the comments to them and show them the pictures as well. We also have mail correspondence.

The other day Jake's mom and I had discussed sending a crocodile to stay in Australia for a month and during this month they would take pics of him in Australia. The thought is that after the month it would then travel to another special needs home with a note and spend a month there as well. They would also take pictures and post them either on a blog, Flickr or Facebook. Everyone's pictures would be on one site and added to by the carer of Mr. Crocodile.

My only thought about this is that he might get lost. What if it goes to someone who cannot send it forward? Does anyone have any thoughts or think they would like to join us in our adventure? I think it would be awesome to join our special needs children together in a special way. What do you think? Do you want to have special time with Mr. Crocodile?

I can attest that it would not be what it is now. I would not have the undersxtanding of other parents that are going through a really rough time in the store as mentioned in Mid Life Army Wife's post. I may have been the parent that was looking thinking OMG... get control. That was before I had awareness. That could have been me before I had experienced this firsthand. I think this is part of the mindset that family members go through. I am not saying it is right but, I can remember how I myself felt about my son's behavior before I could figure out what he was dealing with. I remember thinking that I wasn't parenting him right and he was out of control. I truly thought he hated me as a very small child. 

I am not saying that family is right by rejecting our children. It actually makes me sad. My mother has a very hard time with my son. She doesn't even really try to connect with him anymore. My son will not openly invite you to play with him and he may not come up and be warm and inviting when you come over, honestly he might not even realize you are there, but that doesn't mean he doesn't want anything to do with you. He does not have the social skills to interact and he anticipates that if you want him you will go to him. I cry when I think about the wonderful little man that my mother has chosen not to embrace. He is strong willed and very smart. He has a lot of challenges every day that neuro-typical children don't have to overcome but, slowly he is doing it. In the end he has all of the people who have stood behind him and pushed him to keep going to thank. It is unfortunate that she will not be one of those people.

I must be the devils advocate as well though. If you approached someone and they didn't seem the least bit interested would you continuously attempt to connect or would you find yourself backing away? In the beginning it was all behavioral issues that my mother couldn't deal with but now it goes so much deeper. It hurts because we were able to talk a lot when I was younger but now I feel an anger. Anger because my son is tossed to the side only to be mentioned when I speak of him and even then it is a brief conversation. Maybe it is too much for her to handle that her Grandson is not "Perfect", but what is perfect? He is perfect in my eyes. I try to ignore all parental guidance that my mother rarely offers.  Unless you can walk in my shoes, don't tell me how to do it. 

On a positive note, my sister Melissa has been amazing with Chucky Cheese. She will come over and engross herself with him. Even when he doesn't seem receptive , which you can read about here , she still trys. I love this interaction and so does he. I know that there are times that he catches her off guard and she feels a little hurt, but she pulls it together and remembers that he isn't trying to hurt her. I love her for this. She is an amazing Auntie and he is lucky to have her around. I chose to focus on this as well as all the wonderful "outsiders", that I really don't consider outsiders. They are more like my family as well. They give me the strength, courage, and hope to move forward. Anger holds you back.

This post was inspired by: http://spectrummentor.com/2011/01/06/when-your-family-members-reject-your-child-on-the-autism-spectrum/