Emotions

My emotions are kind of up and down right now. On one hand, Luke is making great progress. He is taking steps, becoming stronger, exploring his environment, and becoming more vocal. On the other hand, I am becoming worn out and frustrated with the lack of progress in other areas. His eating and meal time behaviors can get old really fast. He spits and chokes and coughs. By the time I am done feeding him, I have food all over me. Also, I know that he knows how to drink appropriately from a sippy cup, yet he always gets his almond milk all over himself. So, this blog is meant to give me an outlet for my frustrations, while helping other people understand how frustrating it can be for a mother with a child with disabilities.

I spend most of my time focusing on the miracles that occur with Luke- his walking, vocalizing, etc. There are times, though, when I must allow myself to write through my negative emotions in order to get over them and continue focusing on the positive. I find myself feeling anxious right now. We have started the process of enrolling Luke into a ESE Pre-K class at Berryhill Elementary. I have had a transition (meaning going from Early Steps into the Santa Rosa County Schools) meeting with Luke's Early Steps team. Luke was successful while being served in Early Steps. They helped him get into occupational therapy, speech therapy, and physical therapy while providing in-home services once a week. We talked about what my goals for Luke are now that he will be entering Pre-K. Some of the things I want him to learn are; (continuing) walking with a gait trainer, feeding himself with a spoon, attending to an adult in order to receive instruction, attending to pictures, books, and toys, manding (asking for items using sign language or a vocal), imitation skills (clap hands when adult claps hands), using pincher grasp to obtain small items (cheerios or other finger foods), and sitting at a table during meal time with appropriate sippy cup behavior.

All of things are going to take consistent work and follow through. He has learned to throw little temper tantrums in order to escape from what is being asked of him. His teacher will just have to push through it. I am so thankful that his teacher has agreed to work with him. I just know that we are going to see a lot of growth this coming school year (2010-2011)! We have an IEP (Individual Education Plan) meeting coming up on Friday. This is where I feel a bit of anxiety. I have sheltered Luke for almost three years now. It is almost like I was ready to tell the world that I have a son with a disability. I have accepted it, yet I just haven't been ready to share with people in education. Educators tend to look at everything with a critical eye. We pride ourselves in being able to point at a kids and say, "He has this..." or "He must be that...". Now, I am sitting on the other side of the table. Now, I see how destructive those behavior are. My child is going to be the one pointed at and discussed in the teacher's lounge. By the end of the school year, he may have a laundry list of disabilities (labels) tacked to him that will travel with him during his career as a student.

What an awful feeling this is. I have asked God to forgive me for any times I might have acted like that. Now, I look at things so differently. My heart is burdened for parents with children with disabilities. Their lives are a constant battle, yet they can see where God has moved. They have to constantly battle feelings of inadequacy, disappointment, and guilt. I am so thankful for my walk with the Lord. It is through Him that I find my strength to work through negative emotions and find the miracles in our everyday lives.

Luke Walking

This is a picture of Luke while he is physical therapy. He is walking! He uses a gait trainer and his legs are getting stronger every day! He fusses a bit during PT, but he has come so far in the past year. A year ago, he wasn't even crawling! We were still working on sitting without assistance. Now, he is taking steps. The new goal is to strengthen his legs and work on stamina. He has taken 18 steps at a time and has walked down the hall in the therapy center. I am truly looking forward to the day when we receive our gait trainer and he can walk into church by himself. I give God the glory for how far Luke has come and I know that Luke will go even further than we can imagine!