The Untitled Holiday One

This would be my facial expression after being told that there are only 7 days until Christmas! Ahhh! I have so much left to do! So, today was my day to accomplish I few things.  My Christmas shopping is completely done. The decorations are all up and the presents are wrapped under our beautifully decorated Christmas tree. I got my first spray tan done last night. I went from pale to waz-am in 20 minutes. I like it and I believe I might do it again. It's helping me out of this "I have four children, a second full time job teaching kids, and no energy" attitude.

So, I am taking a new approach. Everything is great and I will choose to see the humor in the things that aren't so great. So, I am going through another Christmas with children who may or may not be completely happy with what they have been given. One of my four children will find more joy from banging the Christmas toy against the tile than actually playing with the toy. It's all good. We are all so wonderfully unique. God bless Logan for having to go through two separate Christmases and feeling uncomfortable living a split life. God bless Sydney and Gracie for having a father who is choosing not to be involved in their lives. God bless Luke for being disabled. Honestly, God blessed my children through their circumstances. God gave Logan a step-mom who loves him and provides for him. God gave Sydney and Gracie a step-father to help them grow spiritually. God blessed Luke by giving him an entire family who prays for him every day.

So, for all that could frustrate us, we choose to view the blessings. What an awesome life we live and what an awesome God we serve! Merry Christmas all~

It's Christmas Time Again- Updates

Wow! I just realized how quickly this past year has flown. It seems like yesterday that we had bought our new house and were putting up new Christmas decorations.

So here's for our updates:

Luke's Broken Clavicle

Last Saturday, Luke fell out of our tall chair on to the tile floor. He immediately started fussing and continued fussing for the next couple of hours. So, I took him to Santa Rosa Medical Center. After 3 hours and a CT scan, we were discharged. They said he would be sore for a while. I took that at face value. So the next day, I was getting ready to give Luke a shower and I noticed that his right shoulder was really swollen. Marty and I made the decision to take him to "Dr. Happy" that next day. Long story short, his right clavicle is broken. He is a brave little boy and is now doing great. He is healing quickly.

Christmas Shopping With Luke

Marty and I discovered the greatness of taking your child with autism Christmas shopping for himself. We were able to go through the store and let him try different toys. We found three that he really liked and bought them. We got home and he still wanted to play with the toys, so while I was wrapping other gifts, he kept playing. When he moved away from the toys, I took each one and wrapped them and placed them under the tree. He didn't even realize what had happened. I bet that he will be surprised on Christmas morning!

The Decorating of the Christmas Tree 2011

We take pictures and videos every year of the children decorating our Christmas tree. We listen to Christmas music and drink hot chocolate. This is the picture of our four darling children. It will not be long and we will be looking at teens in this picture! Oh how I want to treasure these memories. They are so precious to me!

The Love Between a Father and His Son

Luke loves his daddy. This picture was taken as Marty and Luke were watching Logan's basketball team, The Hurricanes, play a game. Luke desires closeness with his father. 

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.

I will praise You in this storm...

I look at my son and all I can see if perfection. I know, in reality, he has autism and cerebral palsy and cognitive delays, and he is non-ambulatory, and he has gastrointestinal issues, and... the list goes on an on, but to me he is Luke, the 3 year old little boy that I am so in love with and would give my own life for. So, I am caught in this in-between world. My heart and spirit know that my son is something more than others give him credit for. My mind and this world tell me that he is "low functioning". I can be reality based, but I long to dream for my son.

I look at my family and I see beauty made from ashes. Marty was a broken man. I was a heart-broken, hopeless woman. We came together and made something so wonderful. God created a family from broken pieces. We are so blessed.

Our family is currently on stormy seas, but we have hope. Jesus was on a boat, a storm was fast approaching, the waves were building, yet he was asleep. The disciples were flipping out, yet Jesus was asleep. Once he awoke, he went to the waves and said "Peace. Be still." and the waves were still and the wind died down. There is a mountain in front of us, but our faith is strong and we are telling that mountain to move in the name of Jesus!

So, while I am dealing with sadness, grief, and anger, I know that He that is in me is stronger than this world!

Praising God, But Still Needing To Vent

This is the most recent picture of Luke that I have on my computer. He's such a sweet spirited child. He smiles and laughs and is generally low maintenance. How blessed I am to have a child like him! I pick him up and he puts his little head on my shoulder and touches my arms with him hands. He hugs me back sometimes and I drink in the moment. Having a child like him has made me really appreciate the small things. When my daughters tell me that they love me, I treasure the fact that my daughters and I have a great bond. When I sit with my step-son and he tells me all that he knows, I thank God that my step-son talks to me. I am a truly blessed woman for I have been given the opportunity to love selflessly. Being blessed does not dismiss me from going through trials, though.

The primary question that continues to run through my head is; "Why does everything (i.e., services, education, diagnosis, health issues, etc.) require a fight?" In other words, why in the world does caring for Luke require such a fight and so much energy? He has no diagnosis, so I am having to fight for him to receive one. Why does he need one? Well, with a diagnosis comes the privelege of receiving services and therapies that he is in great need of. Why does he need services and therapies? School is not enough.

I wrote the first two paragraphs of this blog over a month ago. I wish I had more time to write. I would love to be able to have the time to reflect on all that is happening. There are so many great lessons I am learning right now. I would like to list some of them so that I may come back and thoroughly cover the subjects one by one;

1. Never speak out an opinion of another person's parenting skills unless you know, without a doubt, there is some sort of abuse or neglect occurring. You are not in their home, therefor, you have NO IDEA about what is really going on.

2. No child is BAD. Every behavior has a function. There are adult who are bad, but there are no children who are bad.

3. I am not alone in my frustration.

4. Men do not understand the emotions of a woman.

5. You cannot expect those who do not have children with disabilities to really understand what you are going through.

6. Always have a pre-IEP meeting with your child's teacher before the IEP. You all want to be on the same page so the IEP meeting flows nicely and you are not totally blindsided by recommendations.

So, I have plenty to write about. I wonder how many months it will take me :)

Blah.

Today was the first day that Luke attended his "Special Friends" class at church. This was, of course, at my insistance. He had been with the 18 month olds since he was 2 years old. Luke will be four later this year and I felt that it was time for him to move. His Special Friends teacher was great with him and he seemed to really like it in there.

So, why would I be feeling sad? It's just another moment of emotional upheaval. I feel guilty for feeling sad. I guess I go through times when reality really hits me.

I am just tired.

This is us... take us or leave us but we rock!

This is all of us. We are goofy and we love each other deeply. Luke has an amazing support system.

I think about all I know and all that I am continuing to learn. Each family has a choice to make when it comes to their child with a disability- either the disability with rule them or they will rule the disability. It is wrong to allow a persons disability to become the main focus of a family. The disability is definitely part of the equation, but so are the goals you have as a family. Don't let yourself become so obsessed with your child's disability that you can't look beyond it. These kiddos are amazing and they have such huge potentials. Dare them to reach their potential and provide support for them to get there. There may a few fits and they will make you think that they can't do what you are asking of them, but believe me, they will thank you in the end.

PICA

This is a picture of Luke "stemming" on the wall at his doctor's office. We have a name for the eating behaviors Luke has been engaging in for the past several months- PICA. His obsession with walls and eating paint has become overwhelming. We also found out that he has lost 2.5 pounds. It is really hard to deal with because I don't know what is causing it.

I try and try to provide all the nutrition he needs. He gets his meals, snacks, and extra stuff in each sippy cup, yet he is losing weight. I guess it is easy to feel hopeless about Luke. Everything with him is a struggle. I am so thankful for my mother. She is such a great support. Other than her, I feel like I am going through this alone. I worry and dream and have panic attacks.

It feels like my heart is breaking over and over.

New concerns- Dr. Happy, here we come!

So, the wall licking and paint eating is getting worse. Instead of one wall, there are 6! I have documented this and taken pictures. He is also chewing pennies. He will pick a penny out of a mess of silver. There must be something in it that he likes. He also ate handfuls of sand from our backyard play area today. I didn't realize what he was doing until he had eaten a bunch. I spent all day yesterday worrying that he was going to harm himself with all that he ate. He is also eating mulch. We took him to a local park that has mulch on the ground. We put him down and he tried to eat the mulch.

This is all so concerning. I know that he is like a 1 year old mentally and 1 year olds eat sand and stuff, but they don't eat wood and paint. I have a student that has PICA. PICA is a disorder in which the person craves and eats stuff like dirt, clay, sand, etc. I am just concerned that Luke is struggling with the same thing.

On the positive side, Luke's personality is definitely getting brighter and happier. He smiles and laughs and just has so much fun with himself. He reaches for me and Marty. He actually is showing a preference for Daddy. In normal circumstances I would be jealous. In this circumstance, I am so happy! Marty and Luke have such a good time together.

I love my son, but sometimes my concerns completely block my view of the good things. God help me...