Ignorance is bliss, but Awareness is POWER
Ignorance is bliss. Yes, yes it is. I can tell you this from personal experience. If ignorance is bliss, what is hindsight? Oh right, yes, I know. Hindsight is 20/20, meaning looking at events afterward seem so much clearer than in the moment. That much may be true.
I was going through some old home movies. Our 10 year wedding anniversary is coming up, and I guess I was feeling nostalgic. Of course, there were other videos in the pack too. A lot of Ashlynn, our first born. Everyone always remarks how they had so much time to document everything with the first born, and Ashlynn was no exception. I waited until she was 2:11 to get her evaluated, partly out of pride, partly out of denial, and partly out of a love greater than anything I had ever known.
Tonight my husband and I watched a Christmas video we had rolling in December of 2010. Ashlynn would have been 1 year 2 months. At the time, we are two young parents happy in love, and giddy with our baby. Dear Lord she was perfect. I remember that night. Everything about her was perfect to me. I remember a picture of her I posted on facebook, bow in her hair, wide eyed, wondrous, in front of our tree….and I had said “everything about this picture is beautiful to me.”
Looking back on it tonight, I see things I didn’t see before……I didn’t want to see before. I see her flat head. Yes I saw this before, but it was really noticeable. I remember desperately trying to do tummy time with her, and her hating it, not being able to push herself up, and she felt like she was suffocating. I tried everything to keep her off her head, but delayed gross motor milestones meant she was frequently on her back.
My husband remarked on the silence. If you were not looking at the video, you would have no idea a 1 year old is present. Her silent voice was deafening to us now. Especially since we went onto have a son, a VERY loud son.
At 14 months, she was pulling herself up with the furniture, first starting on the top part of her foot and then rolling it to stand in position. She was floppy. She fell….. A LOT. In fact, there was a bruise on her temple. “She’s just so little” my husband would say. We didn’t see the apraxia then, glaring at us now.
The video panned to a few later random events. Each time her daddy would walk in she would smile the biggest smile and give a shaky closed fist wave. Back then we saw a a baby girl in love with her father….today we saw a baby with global apraxia. I thought to myself though…oh how ignorance was bliss. How we doted and awed at her. She still was nothing short of perfect.
We saw a video of her self-feeding scrambled eggs. She would shove them in closefisted ( a delayed milestone we realize now). She became red at one point, wide eyed, looking panicked. In the video I playfully asked if she was pooping. I had no idea. As I sat watching, my husband said it for me….”she’s choking.”
Yes, she was choking. Gotta love that oral apraxia and the fact she never had an oral phase or chew to her swallow. 🙁
I thought she was adorable though, and went on to praise her and tease her as only a mother could.
She’s come so far. Her re-eval revealed articulation skills in the low average range which is incredible. With apraxia awareness day upon us, I shot a video of her. Granted she was speaking on the spot with a script, but I always say the apraxia is almost resolved, and it is…I think. But with this format, as I watched her, I saw every single diagnostic marker glare at me again as I watched her sweet face on video.
In fact, prosody, or the melody of speech is one thing I have always thought she was amazing at….but when asked to do a script, I saw….the slow pauses, inappropriate stress patterns, decreased intelligibility with longer phrases…….and I have to tell you it hits me like a ton of bricks. My entire career now is based on working with kids with apraxia. I know what I am looking for and I see these things on a daily basis. Seeing them in my own child thought still has me blind….until I see her on video.
My message this apraxia awareness day is to remember, every child is “fearfully and wonderfully made” in their mother’s eyes and ears, even if that eye and ear is now professionally trained to see and hear apraxia. My message is that despite so many odds against her, I cannot help but believe the world for her. That despite so many barriers, I cannot help but believe she will not knock those down too, like all the ones that have come before her.
My message on this third annual apraxia awareness day is to tell you that every mother sees nothing but perfection in their child, and they need YOU…the SLP….the OT….the PT….the teacher…..to believe in them too. They need you to know this because apraxia can be overcome. It can….. but they need a dream team of therapists and teachers. We NEED you. We NEED you to know that frequent and intense therapy does and CAN make a difference, but we don’t want to have to fight you for it at every IEP. We NEED you to realize it too.
That’s why awareness is so important.
Our children may have apraxia, but it DOESN’T have them….especially with your help.
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