Faith: The Replacement Behavior for Fear

Halloween 2011!

I love these pictures!!!

I have been reading a daily devotional written by a lovely woman who has a son with autism. In the devotional, she is very truthful about the joy and pain of raising a child with a disability. Their is a short story, verses from the Bible, and a short prayer for each day. What a blessing this devotional has been! It is amazing to find out that other ladies have gone through what I am going through. I truly believe that God has called parents of children with disabilities to bless each other.

Our Testimony:

I put a picture on Facebook that had the four kids with a grocery cart. I was thinking that Marty and I were kind of brave that day. We took all four kids to Winn-Dixie to get groceries for the next two weeks. There were two comments that changed my perception of our situation;

"Saw you and the girls holding Luke's hands and walking down the sidewalk after church this morning...thanked God for all He is doing in the lives of your family. It was so precious watching Luke walk. Just wanted you to know that God is using you and this journey with Luke as a testimony of God's faithfulness!"

" I was there walking with Amy, it was definitely a God moment. Luke is a walking testimony and so are you and Marty."

Our family has a testimony. Each one of us has a story. God has been with us and has had His hand on all of our lives. Luke has a testimony. He was born to bring Glory to God.

My Ministry:

"Chasing Away"- I was called to bless the lives of other parents who have children with disabilities. The following comment was left on Facebook;

" I'm so happy to see you've made a group for other moms in the area to get together and support each other! That's a ministry need that's so often overlooked. : )"

The person who left this comment helped me realize that what I am already doing is a ministry. It needs to be thought of as a ministry.

An Update:

Luke is now attending a new school. He is doing so well where he is! His teacher is an amazing lady. There is not a day that goes by that I don't thank God for leading us to this class. Luke is walking more and more. we have found a gate trainer that Luke likes. Hopefully we will have one for him soon. He is also finger walking. He will hold on to one person's finger and walk. I am so proud of him. He is making such great gains. I have to give glory to God for Luke. He continues to do better than anyone could have expected!

Beauty

This is Luke at Splash in Panama City, Florida. Splash is a resort with condos. The bottom floor has pools, a lazy river, and something called "The Bucket". Logan, Sydney, and Gracie LOVE this place. It is perfect for them. They don't stop moving until around 9:00pm. My parents take us every year. It is a huge blessing! We arrived on a Friday evening with Luke. He swam with Marty and the older kids at the lazy river. After 45 minutes he was purple because he was cold. Here is a picture of him when he was cold-

He enjoyed himself, though. So, he did not go in the water for the remainder of the trip. 

I am truly amazed by Luke. I just love watching him. He is beautiful. I wish I had the words to describe my love for him. My love for him is truly unique. It is different than my love for my husband or my girls. My girls give love back. I say. "I love you" and they say "I love you" back. Luke has his ways of giving love back to me also. I pick him up and he puts his head on my shoulder and touches my back. He presses into me. 

Luke is a beautiful child inside and out. He is the glory of God revealed in a human being. He is not God, but he proves that God exists. God's hand is on this child. He brings so much blessing into the lives of the people he is around. His teacher says that he is unique. He is unique indeed. 

Thank you God for giving me this beautiful little boy to love and care for. God has changed my life through knowing and loving Luke!

Time to Update

So much has happened this summer. I have decided that it is time to update. I have avoided it because I really didn't feel like I had the energy to write about it. Now, I am feeling motivated. 

The "A" Word

During the summer I became motivated again to push for a diagnosis for Luke. I knew that one diagnosis would not be the end of our story, but we had gotten to the point that we needed some financial help with testing (medical) bills. I had talked to Luke's doctor about the autism diagnosis, but she was not comfortable with giving that diagnosis. At the beginning of the summer, we got the diagnosis of "an unknown syndrome with autistic features". It turns out that our insurance company would not take that as a diagnosis. So, at the end of the summer we went to the neurologist. I was shocked when we didn't see the doctor. We ended up seeing the nurse practitioner. I was upset at first, but it ended up being a God thing! At the end of the appointment we scheduled another EEG. We also were told that we needed to have a sleep study performed for possible blockage apnea. We were told that no one would take our insurance, so we would need to pay $650 for the study. I am still looking for a place that will cover this. The last thing we were given was a diagnosis! We finally received the autism diagnosis! I was so relieved. Now, we can try to get ABA services covered. That's a whole other issue! Autism is definitely not the end of Luke's story, but I was relieved to have something so I could move forward with pursuing social security disability and get Luke on the Medwaiver waiting list. I am still working on that at this time.

The First Day of School

As you can see from this picture, Luke was quite annoyed that he had to wake up so early. He went on to have a great day at Benny Russell Elementary. This year is going to be an awesome year for him!

EEG's and Doctor Appointments

Luke was scheduled for an EEG this past week. He screamed from the moment he arrived until his Mimi had had enough. She has rescheduled his EEG for a later date when he can be sedated. 

He had his well-child check-up and we found out that he had gained a pound and a half since May. Go Luke!!!

So many reasons to celebrate and so much work ahead! 

GI Clinic and Children's Hospital in Birmingham, Al (Trip #1)

We saw a doctor at a GI clinic on Thursday July 14th. Marty, Luke, and I traveled up to Birmingham that 

day. It was a really peaceful trip. We went to see this specific doctor because we had concerns about Luke's digestion or lack-thereof. His stomach just gets so big and hard as a rock. He also passes some pretty obnoxious gas. 

The GI doc suggested that we have a "breath hydrogen test" to test for intolerance of fructose. Long story short, we ended up staying the night in Birmingham and the test was performed the next morning at 8:30. Luke had to fast overnight. Once we arrived, a nurse (really sweet lady) put a mask on Luke's face to collect his breath. She did this twice. Then, she gave Luke a really concentrated amount of fructose in his sippy cup. Every 30 minutes after, she would do the mask thing twice. 

Several days later we found out that he is, indeed, fructose intolerant. He can no longer have corn, foods with fructose (or high fructose corn syrup), corn syrup, tomatoes, peaches, cherries, and a few other fruits that I cannot recall. The number one thing he can't have is sweet potatoes and carrots. These two veggies have been a staple in his diet since he was an infant. 

Over the past two weeks we have adjusted his diet. He is also taking Flagyl (a medicine to rid his intestines of bacteria). The medicine has really helped and I have found out that Luke's body does not tolerate peas well at all. We are still working on the diet. I think we will continue to see improvements. 

Thank God that the doctor was knowledgeable enough to suggest the fructose intolerance test. Now Luke is enjoying gluten and dairy! He loves whole milk :)

The Beautiful Storm

The pastor of my church preached on life's storms today. During the sermon I thought about many of the storms I have gone through in my 30 years of life (thus far). Many of them were caused by other people in my life. Most of them were caused by my own actions. Few were caused by reasons unknown. I would consider what I have gone through (and what I continue to go through) with Luke one of the greatest storms. I would also consider what I have gone through with Luke one of my life's greatest victories.

My heart and mind are constantly on the other parents who are going through what I am going through. No one truly understands us, except those who are going through it. The pain and the beauty of our situations make us unique. There is a lot of hype concerning autism, yet there are many who have children with different diagnosis. Where are the support groups for those with no diagnosis?

Oh Lord, if I could only be given the opportunity... I want to be what no other organization or person has been to these parents.

A Simple Sign of Trust

His Hand in Mine...

Luke shows me everyday that he completely trusts me. He will grab my hand so sweetly. He will look at me and smile. It is these small signs that keep hope alive in me. Lord help me never to take these little signs for granted....

Our Movie Experience

So, we took all the kids to see a movie today- Kung Fu Panda 2. I just so badly wanted to do something fun. I wanted to see a movie. I guess I was feeling selfish. There are so many things I can't do with Luke. He is sensitive to extreme heat and sunlight and cold. He is light sensitive and sound sensitive as I found out during the 15 minutes I was able to stay in the movie.

Luke became extremely overstimulated. He started stiffening and flapping his hands. Then, the high pitched sounds started. The sounds turned into screams, so I just took him out of the theater and walked him up and down the hall. He continued to flap and scream. It wasn't that he was upset. He was excited. After 30 minutes of walking, he had calmed enough for me to carry him to the bathroom. Then, I found a table in the lobby and we sat for 45 minutes.

So, what have a I learned? Luke does not do well at the movies. So, I should not be so selfish to take him into a place that causes him such sensory overload. I will stay just stay home with Luke and let Marty and the older kids enjoy themselves.

I hate the fact that Luke can't enjoy the things that his neurotypical sibling do. I guess, I am upset. I so wanted it to work. It just doesn't.