I have a child on the autism spectrum. I am always working to get her better services and help. I am always looking for the different treatments people swear by. I am always finding new activities to do with her that are aimed at improving her skills. I work on the skills her therapists assign us to work on at ho me. I look for support groups and play dates. I research the school system here and in all the other places we may end up. I try to be an activist and participate in fund raising walks, I have the autism awareness decal on my car to help spread the word that this is a problem that is growing and we need to educate people, keep searching for a cure and make it a priority. When 1 in 150 kids is diagnosed with autism, I believe its time to put this problem up top on the list with the other big issues.
However, I am not perfect. I don't always know the right thing to do. I lose my patience. I get frustrated and mad. And yes, I have pity parties. And when I am feeling so down, I do not want to hear how highly God thinks of me for giving me this special child. I don't want to hear how much worse others have it. I know that already. I see kids with awful disabilities at her school everyday, and thank God that Bethany can run, and laugh, and play. That doesn't mean that I am able too see things that way 100 % of the time though.
Just as I don't want to hear all of the optimists take on life when I'm down, I also hate hearing things like, "Oh but when kids do start to talk you just wish they would shut up" My child doesn't answer yes or no to questions. she doesn't tell me what she wants or needs or whats wrong when she is crying. she has never said, "I love you." She only recently has started speaking a little, mostly labeling things, and now singing songs, and believe me, the idea of wishing she would shut up has never entered my mind. We have worked hard for the speech she does have.
That said, you may wonder, "Well geez! What the heck is safe to say around this lady?" lol. Anything that doesn't involve invalidating my feelings when I am feeling down, and anything that doesn't try to show me how even typical children drive you nuts. I know all kids can be tiresome. I know even if she was typical, I would have my issues. But be sensitive people! I wouldn't go up to a paraplegic and say, oh you are lucky you get to sit all day. My legs get tired."
Just be our friend. Just don't judge, my child, me or my parenting when she is freaking out and having a meltdown. Don't try to insist that there is nothing wrong with her because she makes eye contact. We worked hard for that too! Don't judge me for making parental decisions that you would never do. Maybe there is a reason. And rest assured, I research everything to death. Don't act so shocked if Bethany seems to ignore you, but don't ignore her. She hears you. She knows you are there. She just doesn't know how to interact with you and socialize.
This is not directed at anyone specifically, and I know people mean well. Well, most of them. Don't take this harshly. This is just the way I feel.
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5 comments:
Thanks for sharing that Amanda, it helps me know better what to say. It is probably really good to get that off your chest! Sorry you have such tough frustrating days, it must be very hard. But I admire you for being strong and having such a good attitude. Really, I think you're an awesome Mom. And Bethany is a little cutie!
Amanda, I do know how you feel, I feel like that a lot, that might be one of the reasons I don't talk a lot about the things I deal with on a daily basis because I really don't care to hear what others have to say about the matter whether it's positive, negative or indifferent. I know I've said things along the lines of I know the Lord blessed us and I feel grateful for knowing He trusts me but that doesn't mean it's still not a challenge. Neil told me he loved me for the first time about 2 months ago, it was a small milestone but it probably rated up there with a Master's Degree the way I reacted, lol. Anyway, sorry to ramble, just want you to know I understand and love you and pray for you always (((((HUGS))))
Thanks for sharing your feelings Amanda. This will help all of us be better listners and conversationalists when you need/want to talk about Bethany's milestones. I know it isn't the same cause it is my brother and not my child that is on the autism spectrum, but I still remember the first time he finally looked at me...really looked at me in the eyes and recognized me. It was such an overwhelming feeling. I remember when he started talking...after so long of nothing. Those times were worth a million bucks! Such sweet milestones. There is a cd you really need to get. it is called "Far Different Places."
http://www.garyjoylundberg.com/products/fardifferent.shtml
I think you will really love the music. it touches me the same way that story did that i shared about a month ago. It is great...so inspirational. I think about you guys often and keep you in my prayers. You are such a great mom and Bethany and Shea are SO CUTE!! Cyber hugs!!
Hey girl!
I soooo wish we were closer! You & I have a lot in common it seems! I feel the way you feel about Bethany in reference to my stillborn son. You know people generally mena well but gosh - you just get sick of it sometimes!
Al I can say is you are an AMAZING mom & I know we would have soo much fun with you & Bethany & Shea if you guys were closer!
Hang in there!
(((HUGS)))
Sally
Hi Amanda, Sheesh, I really know what you are saying. My sister has a boy with autism and I have another sister with classic autism and I know that it is HARD! One lady my sister met at a party gave my sister that "look" when she found out she had a handicapped child. My sister told her that it was ok to talk about it and the lady said, "You must worry about him a lot". My sister was like, "I don't worry about him. I worry about my son who is too trusting to strangers and about my daughter who shows too much affection. I worry about those kids but I don't worry about Paul. He will automatically make it to the Celestial Kingdom." Amen to that. You are a great mother! I can tell from what I read in your posts. I know you love your children and that you are awesome. Bethany is adorable too!
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