The problem is...

I can stand and coach Lilah to walk over, and over again, BUT, I don't think her walker should cause problems. I believe an "assistive device" should be just that....an assistant. Lilah's walker gets stuck on her foot, over and over in less than 50m of a distance. I have raised this concern with the PT over, and over, and her response was, "I see it as motivation to make her walk." I see it gets stuck on the top of the AFO, the back of her heel, and other places. Yes, Lilah has a wide gait, but I don't think Lilah should be getting scared of her walker because it pops her in the back of the leg. I asked the PT if we could try turning the walker around or a different device and I got a "No, she's not ready for that because..."

Watch this and see what I mean...



The problem I have with the PT telling me no is this: I am her Mama. I am with her 24/7. I am NOT the kind of Mother who hands her child to you, sits in the waiting room at therapy and plays on my phone. I am THERE. I coach, I help, I sing, I do jumping jacks, anything to distract her from the pain she is feeling. At home I do what they tell me to do. I patch her for 5 hrs/day. (If she takes one off, I put one back on.) I am determined! My wheels are always spinning with ways to help Lilah more. I have heard some of the "pros" tell me that Lilah is not "cognitively there." Oh really....well, my child, the one you are deeming "globally delayed/mildly retarded" is potty training and LOVES it. She tells me when she needs to go. She poops and pees on the potty and claps for herself when she does it.

So, here is one of my problems: the O&M specialist, who actually works with VI people, told me Lilah's walker is not correct for her. The O&M told me Lilah really needs something in front of her to warn her of what is coming. When I mentioned this to the PT she said, "I feel like I can't do anything right." OK, I am NOT here to hurt anyone. I am a HUGE part of this "team." When I tell you I see something, notice a change needs to be made, have another member of our team make suggestions, we cannot take it personal. My job is to inform you as much I can about Lilah so we can learn and grow as a UNIT! My goal, my fight, my determination, my will.... is for Lilah.

I believe that Lilah is a sponge that is absorbing all of this information and is SO ready to spread her wings. Our "team" needs to work together to help Lilah fly. Today Lilah has an evaluation for speech at Backus. Tomorrow we begin with a new PT. I am nervous about this new PT because I hear she is "stuck in her ways" like the other PT. We, unfortunately, didn't get the PT we had hoped. I am praying that the new PT will listen to me, understand my concerns and be willing to try something, even if it fails. If not....we will be leaving Backus and going to a new clinical setting for PT. ( I pray that doesn't happen because Lilah LOVES her OT, babbles with her, giggles, loves her, and is making great strides.)

Being an advocate for Lilah has taught me a LOT. Being an advocate means sometimes making people mad, but I pray that as I learn and grow, I can do this advocacy thing better and better. Prayers are greatly appreciated!