Wow- I Don't Update Enough!

Luke is enjoying his summer. He has started sleeping in the toddler setting of his bed. He is enjoying being outdoors and watching the trees. He also love to swim. What a change! He used to loath water, now he has to always touch it and play. I am so thankful for the growth. He is also eating a wider variety of foods. He ate his first peanut butter and jelly sandwich this past week while on the way to Waynesboro. He is chewing better and moving his food around his mouth with his tongue. His oral motor skills are improving. I give glory to God for all the strides Luke is making this summer. When I think about all of the positives that are occurring, I just can't help but totally know that God is in control. He should be glorified!

Luke received his new gait trainer a little over a month ago. He is not responding very well to it. He is in denial of the fact that his old gait trainer is gone and he has to deal with the change of a new one.

We will get him walking, though. It will just happen. Just as everything has been- we pray, we wait, we praise.

There are a few new challenges. I have spent quite a bit of time quietly observing my little guy. I watch his face, his head, his hands, his arms and legs, and his feet. I quietly listen to his little voice as he yells, says "Dadada!" or "Bababa!". I watch him as he turns his eyes to the ceiling and shakes his head side to side quickly and laughs. I watch as he flaps and waves his little hands when he gets excited. I watch his sweet little facial expressions that are uniquely Luke. He cuts his eyes over as he looks a suspicious person or item up and down. He fakes a smile when he is considering his options. He laughs out loud as he hears a loud sound. He panics when he falls and it hurts. I watch him as he falls asleep. Only in those moments he looks at me as if I am the only person in his world that matters. My heart melts.

I watch him become frustrated with his feet. I watch as his facial expression changes and he bites his hands because he is feeling stress. I experience the new biting behavior and realize that he is only expressing himself and he will need to be taught a replacement behavior. Most of the time, I watch my little one from a far and notice how much time he spends engaging in self-stimulatory behavior. My head tells me why you do this. You find pleasure in scratching walls and baskets. You like the way it feels when you move your head back and forth vigorously. My heart continues to wonder- What do you see? What do you hear? What do you feel when you reach your little hand out?

So, emotions just seem to take over. I am hopeful, yet I hold back. I don't want to be the one putting limits on you. In my eyes, you have caught the moon and brought it down for me to explore.

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 :)