Normally, I don't let myself get my hopes up about my daughter's future. If you have a child with autism, or any special-need, you know that it's difficult to think about their future when their present seems so uncertain. Every day is a challenge; every day is a question mark; every day you wonder, "What will she meltdown about today? Will she get along with her brother, or will I have to separate them again? Will she wake up happy or mad?" Some days, it's almost impossible getting through a day with her. Everything sets her off, everything that happens around her results in screaming or crying, or she just plain wants to be left alone. But this day was not one of those days...
Friday, the 11th, I saw my little girl - perfect and happy - with big smiles and light shining in her eyes. She was playing with toys, playing with me, and playing with her brother, laughing - just like a regular kid. She spoke in clear, complete sentences and she didn't scream at all for the entire morning. Beauty wanted more interaction: more hugs, more tickles, more playing, more eye-contact - it was amazing! I don't see it often, but during that time I was able to see my little girl - really see her - and autism was nowhere in sight. It was beautiful and heart-warming and I didn't take one minute of it for granted.
These four hours of pure magic occurred during my daughter's monthly DIR/Floortime therapy session. The therapist arrived and Beauty woke up in a great mood, so I knew it was going to be a good day (I just didn't know how good!). Lori, the therapist, explained to me that Beauty has reached level 4 in the program and that it was time to change things up a bit. We spoke about different ways to try to allow Beauty to begin "a circle," allow her to "invite" me into her play, and get her to interchange concepts and ideas into other forms of play. After discussing all of that, Lori ended with "Just let her guide you and keep her engaged with you." So, that's what I tried to do.
It may sound easy: "let her guide you..." but it's actually a lot of work. I have to detect when she's opening a circle, when she's ready to allow me to join her, when/ if she'll follow my lead to change the play a bit, when she changes the play so I can respond appropriately, if she's becoming more focused on her toys (so I can quickly re-engage her), and lots of other little, subtle changes. Floortime therapy is a lot more work for parents than it is for kids, I think. I've read other people's take on this type of therapy. Most parents that see "no result" from their kids are the ones that think the therapist is supposed to do all the work.
I've never been that type of person. I want to learn what to do; the right and wrong ways to do it, and I'm not going to wait until the therapist shows up once a month to attempt the therapy with my child. I see my daughter every day; which means I have the opportunity to work with her on a regular basis. Once a month for four hours isn't going to be enough to make a significant difference. If I want to see my daughter succeed, darn it - I gotta put the work in! For the last 5 months, I've seen some positive changes - small ones - but still good. This day, however, everything came together PERFECTLY - it was simply amazing!
Near the end of the four hours, Lori said she believes Beauty is ready for the social-interaction class down at the center. What's different about this class? It's a class with regular, neurotypical kids! Meaning, Beauty will be spending more time with kids her age, who don't have autism. I'm extremely excited! Of course, her preschool class has been great for her; learning to interact with other kids like her has been a great step. But for her to finally have the opportunity to be around regular kids, in a controlled environment, will be a monumental step forward for her. Beauty learns so much simply by watching other children and I can't wait to see what new thing she learns next!
It's hard to think about your special-needs child's future, wondering if they'll be able to take care of themselves or if they'll make it through high school. Their futures always seems so "up in the air." I have to remind myself, "She has autism, but autism is not who she is." It's difficult to remember, but I won't forget it again, especially not after that morning. I saw my daughter. I met my daughter. We had 4 beautiful hours together where autism took a break and let her breathe. She was being herself, her true self. She is beautiful and I am a proud mother. Her future is bright; we're going to make it. I'm relieved and overjoyed. I can finally say, "My daughter will be OK. She is going to be happy." Autism - your days are numbered!!!
Kick autism square in the booty!!! It's so great to read success stories.
ReplyDeleteMargie, that's incredible!!! You are doing such an amazing job. No one that doesn't have a child on the spectrum understands how hard the little things can be, and those of us who DO have kids on the spectrum can't even understand it completely, since our kids are so different. Those moments are PRICELESS, and huge. I'm so happy for you! Go Beauty!!
ReplyDeleteI know and have witnessed the long hours that you spend everyday working with and for your children. The mere fact that Beauty is no longer glazed over standing by herself with a, "don't touch me", sign stamped on her forehead is because of how dedicated you have been.
ReplyDeleteAwesome for her and Brava to you!
My wife and daughter are amazing!
ReplyDeleteWow, I'm so glad that you're so glad! You've got some serious struggles in your life, so to read such a positive, uplifting post is... Well, I'll put it this way: I don't see you guys as much as some of your other faithful readers, and I'm sure I don't know you as well, but I really feel like I get a handle on who Margie is by reading this blog, and although I'm sure I'm more a stranger than the people with the above comments, I will admit that I got a bit teary-eyed when I read that post.
ReplyDeleteI do have one slight correction, though- If being happy with smiles and bright eyes and laughing and playing with family nicely for four hours is "normal" for a 4 year old, (wait, is she 5 now?) I don't think anyone has normal kids. LOL, I mean, that is quite a feat for anyone- no wonder you're over the moon! Seriously, though, I'm so pleased for all of you that she's made so much progress. What a cool kid. ...and mom!
Thank you everyone!!! Amy and Dede - you're both awesome too with all you do for your special little ones! Thank you for the encouragement =) BFF - Thank you for ALWAYS being there to support me! Robert- Aw...thank you honey =) And Britt - You're gonna get me all emotional now! lol Thank you so much for your words! I really try to make my blog as "real" as possible. Thanks so much for your support! (and yes, Beauty is 5 now - unreal!)
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