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!

A Hilarious Moment!!!

This morning, Luke was complaining rather loudly about the fact that it was taking so long for his oatmeal to cool off. After several minutes of this, I told him to "Put a sock in it!". A couple of minutes later, he crawled up to me with a pair of socks in his mouth! I couldn't help but laugh at him!!! It was so funny. He even posed for me with the socks in his mouth while I took a couple pictures! He definitely has a great personality!! :)

Good News!

It looks like Luke is going to be able to be a Berryhill Bear next year! God is giving us favor!!!!!!

Adenoidectomy

Luke had his adenoidectomy last Thursday. It was scary for me, I must admit. I just hate it when I know my kids are in pain. He did so well, though. In this picture, Luke had just been put into the recovery room.






After a couple hours in the recovery room, we were able to take Luke home. He wanted to be held for almost two days straight. I was finally able to put him down in the recliner for 20 minutes at a time on day two.

Since then, he has been running about a 101 fever and has been a bit grumpy, but he is already responding differently. When I call his name, he looks at me. Yesterday in Sunday School, I was holding Luke and he actually reached out with arms and body to his daddy. He wanted Marty! This is huge for Luke... He hardly every does this!

So, I am really happy with how things are going for Luke. We also found out that insurance will cover his gate trainer (walker for children with disabilities)! I am looking forward to the day when Luke can walk into the doors of the church and move into a room with kids closer to his own age in nursery. God is good!

Discovering What Love Truly Is and An Update

WHAT LOVE IS: My love for Luke gets stronger every day. Bonding with Luke has been a different experience. The moment my girls were born, I felt a strong bond with them. Luke's birth was more traumatic. I think I even went through some sort of depression after his birth. So, I did not automatically bond. I knew that I loved him and I was committed to being the best mother I could be to him. I just didn't have that strong connection with him like I had with Sydney and Gracie.

Now that he is almost 31 months old, I feel a closeness with him that is unlike anything I have ever experienced. He will cuddle with me now and he will even reach up for me to pick him up. Those moments are the best! So, this journey with Luke has taught me so much about life. I am so grateful for the experience :)

UPDATE: Luke has really grown lately. He is now almost 26lbs and he will stand in a gait trainer for 15 minutes without help. He is learning to request items and actions also. This requesting is called "manding". When he mands, he signs for what he wants. He now mands for "up". We are working on "eat" and "drink" also. He also tacts "Baby". Tacting is just another word for labeling. I have a book with a baby on the front cover. I will say to him, "Luke, touch the baby". He will look at the baby and put his hand on it. This summer we are going to work on teaching Luke to use a spoon to feed himself. I am so happy for him. He is making good decisions that are leading to growth.

He is also doing something else that is new and can be viewed as good and bad- He is throwing fits! He is learning to assert himself. He will sit and rock back and forth and throw his head back and yell when he doesn't get what he wants. He also throws fits when we push him to do something that he doesn't want to do at that moment. So, it is good that he is asserting himself. Now, we just have to treat him like the rest of our kids and not let him get away with this behavior :)

I no longer say that I am proud of my kids. I now say that I am happy for them. If I say that I am proud, they may think that when I have to discipline them, I am no longer proud. When I say I am happy for them, it puts the ball of responsibility in their court. When they make good decisions, I am happy :)

Getting the Ball Rolling

This picture was taken by Mimi yesterday during Luke's therapy. Look how well he is doing! I am so happy for him! He fussed the entire time, but he is strengthening his lower body.

So, my mother, Marty, and I are getting the ball rolling for Luke to be enrolled in school next year. We are going to observe in some local classrooms and set up meeting, so we can be as informed as possible when making choices.

It is really interesting. Enrolling a child with special needs in a school is a totally different beast than enrolling a typical child in school. We are already starting the process now, in February, so we can set up IEP (individual education plan) meetings in May, so he can attend school on the first day of school in the fall this year. This process is taking a lot of mental energy as well as taking a good amount of physical energy between emails, phone calls, observations, etc.

I have been on the other side before. I have attended IEP meetings as a teacher. Now, I am having to go through this process as a parent. I must admit that it is difficult. My child, whom I have protected for the past three years, is now going to be exposed to life outside of my protective shadow. It is scary for me. I know it is not scary for him, but I just don't want anything negative to happen to him. Many people have opinions of Luke that are totally wrong. They look at him and think that he has no cognition (thought, ability to think and reason). They don't see what I see. They also don't expect of him what I expect of him. So, it scares me.

Going through this process also forces me to forgive some people who have hurt me deeply in my professional experience. Will they treat Luke as they had treated me? I pray not, but I am unsure. My plan is to advocate for Luke, while also keeping in mind what the school system is capable of. I will not be the type of parent that every teacher dreads, but I will be the kind of parent that keeps people accountable for their actions.

This is just kind of difficult... and the difficulties are starting to effect me in weird ways.