In the world of a one year old, they don’t know that it is actually their birthday. They may understand that their parents are ridiculously cheesy for some reason, they may be excited about the presents they get to open and they will especially love the cake they get to indulge in, but for the most part…it’s just another day. So when we were asked if today would be a good day to have the therapists come out to evaluate Lola, we happily replied “yes”.
Two therapists came to our house at 10:30 this morning to take a look at Lola. They simply wanted to observe her as she played all while asking us numerous questions regarding Lola’s life. We told them all about Lola’s long medical history (too long for a one year old if you ask me), the therapy she received in Costa Rica (they were quite impressed) and basically what Lola can and cannot do at this point in time.
They were here for over an hour and they were rather shocked as to how well Lola is doing given the medical circumstances. One therapist commented that the diagnosis of lissencephaly is generally quite grave which is why she was so happy to see Lola being able to do things like sit up, roll over, motioning as if she wants to crawl and much more. Lola’s biggest setback was clearly her vision, but they were impressed with how she adapted to her environment given her low vision status.
There were several areas in which Lola was being scored in. Both therapists said Lola may have scored low in some areas because of her vision impairment, but the evaluation isn’t really curtailed to children with lack of sight. Lola scored normally in her adaptive abilities as well as her social skills. She scored just below average in her fine and gross motor skills meaning things such as pulling off her socks, trying to feed herself and attempting to crawl. Her lowest scores came from the cognitive capabilities, but they were quick to point out that a child is evaluated on things such as stacking objects, mimicking physical actions of a parent or cognitively understanding the function of a toy. Well for obvious reasons, Lola doesn’t do these things. She can’t mimic a motion if she can’t see what the motion is, but she will mimic a noise such as a hand tap if you clap her hand or a hum if you make it first. She doesn’t stack objects because she can’t see what objects are in front of her and she simply doesn’t understand how toys function in the same context a child with normal sight would. She understands that her drum will make a noise if she hits it. She gets that she will hear a cool sound if she taps on her xylophone, but these skills have been adapted because of her lack of vision. She clearly understands cause and effect, but only in the way that is pleasing via auditory. Both therapists understood all of this, but it is a form that is made up for every child with or without vision. We heard a lot of “Wow Lola”, “Impressive Lola” and “Very Good Lola” which makes us both quite proud. There is something waking up in Lola so it makes you feel good to hear it being recognized by a professional. But really Lola’s scores were high given the circumstances. She was not more than 20% delayed in any specific area which means she is slowing catching up in that bell curve.
The next step is to have a final meeting with Lola’s case manager to come up with the plan for Lola’s therapy. We will be provided with the type of therapy Lola would most benefit from and we will pick the therapy agency that would best suit Lola’s needs. We will go over short term goals as well as long term goals and from there we will be contacted by the agency within two weeks to set up the first therapy session. From what we understand, she will have at least two therapists coming out on a weekly basis. Again all of Lola’s therapy will take place in her natural setting meaning our home.
So now we plan on spending the rest of the day just relaxing, playing, eating one of the TWO Edible Arrangements Lola got today (thank you Grandma Kathy and Mindi!) and showing Lola lots of birthday love. We have a little party planned for her on Saturday, so no ridiculous amounts of sugar and presents today although she has to have some because it is indeed her first birthday!