This is a series of pictures that was taken a few days ago...
Ouch!
A smile to hide behind.
Reality Bites- literally.
These pictures perfectly show what my relationship with Luke is like. Sometimes, he just puts up with me. At other times, Luke desires a certain level of physical affection. Most the time, I think he just wishes I would leave him alone.
Luke has personality. He lets me know what he likes and what he doesn't like. I honestly think that there is something more to Luke than what meets the eye. He does not value social interaction. He does not have a high level of needs, therefor, there are not many things that he finds motivating. He has no functional expressive language. These three things combined with the fact that he has a physical disability makes Luke seem extremely low functioning. I just don't think he is as low functioning as other people view him. Evaluate him with any assessment piece and he will be found low functioning. Watch him for several hours within a span of a couple of days and you will see something different. There is not one assessment/evaluation tool that can be used to really show what Luke's level of functioning is.
So, in school, he is in the "profound" group. He will be going to kindergarten next year. He has been reevaluated and is to go into a class with some of the lowest functioning students in the county. He is currently receiving ESY (extended school year) services. This is critical to Luke in that it will bridge the gap between preK and kindergarten. We do not want Luke to regress.
The first day of ESY, I drove Luke to the school and dropped him off. This is the day that reality really hit me right in the face. Maybe I have been in denial or maybe I am just crazy. I do not view my son as being in the same group as he has been placed in. I think he is a step up from the lowest functioning students. I can't prove it, though. How heartbreaking it is to have to admit to myself what reality is with Luke!
I think that is why I stay removed. I do not get involved with his school or in his classroom. I do not allow anyone to get too close to me. I can't emotionally take the reality I am living with Luke. He will be turning 6 in August and he cannot talk, walk, feed himself, use the potty, chew appropriately, sit appropriately... the list goes on. I ask myself how will I be able to handle this as he gets bigger. If it weren't for Marty, Luke would not have most of his financial support to meet his needs. All other responsibilities fall on my shoulders. What is it like to truly enjoy a meal without having to feed someone else at the same time? What is it like to not have grubby hands touching my left arm and pulling it during meal times? It is only on rare occasions that someone else feeds him or changes his diaper or fixes his sippie cups. I am Mom. This is what I am supposed to do. I just find it overwhelming because I don't see a light at the end of the tunnel. I see myself having to provide the same kind of support for the rest of my life on earth. It is disheartening.
You ask, where is your faith? Oh, I still have faith, but I also have to be reality based. This is why reality bites. I am torn between having faith that God can do a miracle and knowing that my reality will not likely change until I reach heaven's gates.
