The Untitled One

I love this picture of my little ones. They are so precious. I have really gotten in touch with how much I adore my children and how I am so thankful to have them in my life. Each one has brought so many blessings into my life. I am really emotional this Christmas. I am really trying to treasure every sweet moment. I am missing my father. I am missing old friends. I wish that I could share some of these moments with my father or my grandmother who lives in Tampa.
I am thankful to have my mother, second father, and grandmother (among others) here in Milton with me. It would be so hard if they were not here. I do miss my friends and family in Tampa and in Texas, though.
I wish I had someone I could really talk to. Someone who would listen to my fears and frustrations and who would still love me and support me. I have been put into some situations lately where another mother is going through some tough things with her child. I am glad to be friends with this mother. I want to provide some comfort and encouragement. The frustration I have is that she is getting so much support from others. I really have not had much friend support with Luke. My mother is there for me, but the support is different. I am so thankful for Mom, but I wish that some of the people who call themselves friends of mine would provide some prayer and support.
I took Luke to the doctor two days ago and found out that he has not gained any weight for over 6 months and has not grown like he should be growing. I asked this doctor if I should be worried about this and she said I should definitely be worried. So, we get to go see another doctor to figure out why he isn't growing. I feel like it is all my fault. I get so frustrated! He can't eat table foods. He even gets choked up on soft chunks, so I have to puree everything. His body doesn't react correctly to dairy or wheat products, so his diet is really restrictive. Of course, he is not getting the calories he needs. He can't eat the foods with the bulk of the calories. Is my son ever going to show growth in this area?
I had a dream a week ago. It was terrifying. I need to open up. I feel as if I am trapped in a box.

Memories

This picture was from almost 2 years ago. I have spent some time looking at pictures from the past 4 years (pictures taken after meeting Marty). Luke was a beautiful baby- he still is. His skin is so pretty and his hair is so thick and curly. I strain to remember when the girls were babies. I enjoyed them so much. I loved watching them learn how to crawl, play with their toys, learn how to pull up and walk. I expected those things to happen with the girls and so, when they did happen, I wasn't surprised. I was happy, but I didn't really celebrate the milestones.

With Luke it is different. When he rolled over, I celebrated. When he started army crawling, I counted it as a victory. When he began crawling, I took videos and pictures. My heart longs for him to hit other milestones. I so badly want to hear him talk. My heart longs to hear him say, "Mommy". I look forward to the day when he will walk.

Sometimes, it is easy to become discouraged. The days when I don't see growth make me question. Lately, I haven't seen growth. I have actually seen some regression. He is beginning to choke on his food more. He is constantly congested. He seems disconnected lately. I hate it. I feel like he has to fight to grow. I feel like I have to fight to see him grow. We cannot afford lost time. He needs certain therapies. I am having to fight to get him into them.

The more I am finding out and learning about the world of disabilities, I am becoming more resolved to make a difference. Parents and their children with disabilities need many people to advocate for them. I am pushing through hurt and worry and choosing to position myself where I can make a difference. Oh, that God would open doors for me to help others!

Research and Luke's Little Personality

I have recently obtained a graduate research assistant position at the Autism Center at Sacred Heart Hospital. I am really enjoying the job. I assist a lady who is so bright and so experienced. I just love being around her and talking with her about the research that has recently come out about autism.

Did you know that there are over 6,000 syndromes? Yep, there are! Finding a syndrome that matches what Luke has going on is like finding a needle in a haystack. It's insane. Researching syndromes has really make me think about all the challenges that people are going through on a daily basis. Some of these syndromes are fatal, some syndromes cause major life-altering physical and mental problems, and others can just cause minor issues that doesn't effect the person's way of life. Dealing with a "not-yet-identified" syndrome is like a great mystery that may take years to solve. There is part of me that wants to know. Then, there is another part that just wants to let it go.

So, totally off subject- Luke's little personality is beginning to shine! He laughs and smiles. He is actually beginning to accert himself. He is beginning to attention seek and he is beginning to express himself when he is not happy. He is making awesome progress. We have been working on potty training a bit. The picture above is Luke telling me off about being on the potty :) He is starting to eat some cut up table foods like hot dogs, cooked carrots and peas, cooked apple chunks, and pancakes (yes, I know pancakes have gluten). I have began to introduce some gluten into his diet. I allow him to eat it one meal a week. It is an experiment. Research has shown that a gluten-free diet does not positively effect a child with autism. I actually think that the research I have read is correct, in a way. The researched was aimed at disproving the theory that a certain diet can effect children with autism. The research, indeed, proved that it does not directly effect the behavior. I have a different theory, though. I believe that certain people do not react well to certain foods. This pertains to any individual, not just an individual with a disability. In normal circumstances, the body takes each ingredient in the food we eat and processes it to give us energy among other things. The body uses the starches, sugars, proteins, etc to run itself. The people whose bodies do not process nutrients correctly, begin feeling the side effects of their body rejecting the ingredients. These side effects can trigger problem behaviors as well as many other health related issues. For instance, I notice that when Luke eats foods containing gluten he seems a bit more disconnected, grumpy, and he begins to produce mucus. The mucus causes congestion. The congestion may be the cause of the grumpies. Every system is connected. Even if you have been tested for allergies and the tests came back negative, your body may still be "sensitive" to certain foods. So, if you're feeling fatiqued, moody, sick all the time... begin looking at the foods you are eating.

The research I have been reading has really opened my eyes. It has also made me start thinking about what I want to do my Master's research on. Life is good :)

A Sign Whose Presence Ticked Me Off

So, as I was traveling across the Florida Panhandle with my husband and Luke when I came across this sign. It really rubbed me the wrong way. Two questions; 1. Why in the heck are they announcing this to the world?, 2. Do the parents of this child think that it is MY responsibility to watch out for THEIR child? I have children and it is MY responsibility to ensure their safety. I do not try to make other people responsible for MY responsibilities.

Another thing... the sign should read "Caution Child With Autism", not "Caution Autistic Child". The child is a person first. The disability comes second. Not autistic child, but child with autism. Ugh!

Thought Provoking

I saw an old friend the other day at my grandmother's place. My old friend looked good. She has two children. One is 4 and is autistic. The other is around 3, I think. She had a chance to meet Luke. She knelt down by his stroller and talked to him like he was a normal two year old. Most people do this, but I always feel awkward. With her, I didn't. I knew that she has been through the same thing. She asked if Luke was ok with being touched. Her son was comfortable with touch. I told her that he is comfortable with touch. She was good with Luke. It was neat to see.

My son is extraordinary. He smiles and likes to be touched. He will cuddle with me or Marty. Last night, I was holding him while I was sitting on the couch. Luke pulled up on my shoulders and pressed his face against mine. He was smiling and laughing and babbling. Times like those are "Jaime Therapy". Something my heart and soul needs.

I cannot imagine how mothers feel when they give birth to a child who does not like their touch. It is innate for a mother to touch her child and for the child to find comfort and healing in this. I have heard many stories where a child has been deathly ill and the mother has held the child, bare skin to bare skin and this provided healing for the child. I guess I have never really given Luke the chance to reject my touch. I do not push him beyond his boundaries, yet I always take advantage of his good moods. He hated showers, yet I always took time to bath with him. I held him, bare skin to bare skin. He would fuss for a while, but find comfort in my arms. He hated the water, but my presence helped him push himself beyond his sensory issues.

I will admit that Luke spends a lot of time playing, by himself, on the floor. A typical child would demand attention and therefor receive attention. Luke does not demand it, and does not get as much attention as the other children in our family. Sometimes guilt creeps in, but I do what I can to not allow it to stay. It doesn't change anything. Luke is different. I make sure his basic needs are met, but I have to get things done in my house. None of my kids get an extreme amount of attention. I, more or less, expect them to entertain themselves. Right or wrong, it's what has to be done in a family of 6. It's amazing how we all fit into our place and space in our family. Even Luke fits. Our family has a lot of work to do, but we are blessed to have each other. Every child and each adult is worth the work.

An Overwhelming Need

I am noticing something about myself- I have an overwhelming need to share my story about Luke with other people. I need to share with other parents of children with disabilities. I keep finding ways to do this. Today, at work, I spoke with a lady around my age who is volunteering at my school. Every day I find a way to talk about it. I have been through so much in the past couple of years. It has been a mix of sweet and sour experiences.

What I am about to share is very personal, but it is part of my journey. I married my husband on September 30, 2006. I had two little girls from my previous marriage. My husband had a boy from his previous marriage. We were happy with the three we had. We did not want any more children. I was on birth control and my husband planned to have a vasectomy in late December. As fate would have it, or as part of God's plan, I conceived Luke a couple weeks before Marty had his vasectomy. In late December, I knew I was pregnant. I had all day sickness and many other pregnancy related symptoms. I went to the doctor when I was a week late. They did a blood test and told me that it was negative. A week later, I had a period. So, I accepted the fact that I wasn't pregnant with joy. 4 weeks later, I was still feeling sick along with the other things, so I went back to the doctor thinking I was going crazy. They did a urine test and told me that I was pregnant. I broke down into tears. This was not part of the plan.

I continued having periods for 3 months. Then, during month 3 I woke up in a puddle of blood. I was in pain, so we went to the emergency room. I was never seen. The next morning I had an ultrasound and all was well with Luke. No one knows why bled. In the 8th month of pregnancy I began running out of amniotic fluid. The ultrasound I had on the afternoon of the 21st of August 2007 proved that I needed to go right to the hospital to have a c-section. Luke was breech. He was feet first and his umbilical cord was right underneath his little toes. He had to be delivered by c-section.

The pregnancy and the delivery was traumatic for me. There was so much stress. So, Luke was delivered. He was so cute. He looked like a little alien. Just like his mommy :) The first week after his birth was hard. There were three other kids in the house. My in-laws were in town. No one seemed to really be paying attention to my needs. I came home from the hospital running a 104 degree fever and in severe pain. I was left alone in the house with Luke and the two girls. I finally called my mother to come get the girls. I couldn't handle it. I was tired and in pain and feeling quite stressed because people were more concerned about a certain two people in my house than about me or Baby Luke. My mom picked up the girls. I was so thankful. I couldn't take care of them at the moment. Even with all that I was going through, I ended up being told off because I sent the girls away. It was weird and traumatic. It has been two years and yet I still hurt over the situation. I felt so small and meaningless.

A couple months later, I began realizing that Luke was "neurologically young". I felt, in the pit of my stomach, that something wasn't right. At the age of 5 months, Luke began the journey of testing, doctor's appointments, more testing, and more doctor's appointments.

I love my son. I am passionate about my son. We, as a family, are finally getting to point of understanding, compassion, and kindness that we should have been when I had Luke. In writing about this, I am trying to forgive. I am trying to move past two years of trauma. I love my family- my husband, kids, parents, in-laws, etc. But I can acknowledge that I have been hurt.

A Rare Moment of Open Honesty

I have been following a blog of a woman whose baby has been diagnosed with Trisomy 13 prenatally. This is a fatal condition where "conditions are not favorable for life" outside the womb. She is having to face the fact that her baby will most likely die after she gives birth to him. She, and her husband, are facing this with grace and faith. It is so amazing to see people going through these situations. They have so much faith. I am absolutely in awe of these how they are dealing with everything.

She has a video on her blog that shows a husband and wife going through the same thing. In the video, the baby is born and five days later the baby dies. It is a very real, very personal video. I feel priveledged in being able to view it. After the kids went to bed last night I asked Marty to watch it with me. Marty was a little hesitant, at first, but the vidoe ended up really bringing out some emotion in him. I told Marty that viewing the video really allowed me to put some things in my life in perspective. He, then, looked at me with tears in his eyes and told me how he feels so blessed to have Luke in his life. He said that he knows that God made Luke and Luke is perfect. He admitted that he lives a blessed life and he is so thankful for it.

It is so wonderful to have a moment like that with my husband. It does not happen often. I am just so thankful for the moment because it helped me see what is really going on inside my husband.

Smiles and Acknowledgments

Luke is crawling now!!! He is actually getting on hands and knees and crawling. It is such a huge victory! I want Luke to take his development steps in order, even if he is late in taking them. I want him to crawl before someone tries to get him to walk. I just think that it is important for a baby to go through the steps God intended in development. Crawling helps the baby's brain develop.

I am just so proud of Luke. A lady at my church came up to me and said that the nursery workers at church are just so amazed with the progress he has made since being off the seizure meds. He has actually been making some social progress at the church. Today, he crawled up to a couple of the kids in his class and tried to play with them.

To me, knowing that Luke is moving forward is so comforting. So many of the worries and fears I had seem so petty now. I have started reading some other blogs of people who are going through so much more than I. Reading the blogs has given me a different perspective. I am so grateful for Luke. He is such an amazing little boy and there is no doubt in my mind that there is a reason he was born. I totally understand that life with a child with Cerebral Palsy and a "unknown" syndrome with autistic features is not always going to be easy, but I am just so thankful to have him.

A Different Perspective

I wrote this last year when I was teaching first grade at Bennett Russell Elementary School...

Having a son like Luke has caused me to think about so many things. How will he be perceived? What will his experience in school be like? What will be his diagnosis? What will my future be like with a son with disabilitiies?In thinking about my own experience, I begin to think about other children who struggle in school, whether they have a disability or not. There are a couple students in my class who struggle. I find myself wondering how that must be for them. They are so sweet and so young to already have struggled so much academically. Sometimes, teachers can view these kind of students as almost a heavy weight of sorts. These students tend to be a bit more high maintenance. On the surface, they seem to have no motivation for learning, and because of this they can have behavior issues. Sometimes these students are viewed as lazy and as goof-offs. I have begun to look deeper than the surface with these students.
Imagine for a moment that your husband or wife took you to a place where you were made to play an instrument like the violin or piano. You have no idea how to play, and you are being told that you HAVE to play. When you ask why, The people just tell you "because I said so". They put a piece of music in front of you, give you the instrument, and expect you to play right then and there. You've never really wanted to play the instrument and have trouble finding a reason to play. So, you struggle because you can't read music, the instrument is just plain confusing, and you really don't have a good reason to try. You are frustrated and the people are frustrated with you. How aweful that would feel! Then, you begin to feel bad about yourself, and to make matters worse, you are put with the group just like you who have no real motivation and are struggling and frustrated. You are made to play that instrument during your 90 minute instrument block. You have an instrumental intervention specialist, and you go to a 20 minute instrument intervention group every day. All the while, no one has helped you understand the reasoning for learning to play in the first place.
You see, all of the best instrumentalists and musicians could teach you, but until you begin to motivate yourself, you will never truly learn how to play.It is the same with these students. Until you prove to them that it is worth it TO THEM to learn, they will never reach their full potential. Oh, they may learn, but may only be learning to get by. Instead, let's show them that they can learn and that the only limits on them is the limits they put on themselves.

The First Diagnosis

Today's doctor appointment went well. We finally have a diagnosis-

"A not-yet-identified syndrome with autistic features & Cerebral Palsy"

The diagnosis is pretty vague, but it will give up the ability to sign up for the Med Waiver Program when he turns 3 and we will be able to try to get SSI. That's all I wanted. I want Luke to be able to receive a few specific therapies when he gets a bit older. This diagnosis will help him get these services.

I honestly feel exhausted. I have much more to write, but really little energy to write it with. So, I will save it for another time. Finally- a peace of sorts.

Immunizations and Today's Doctors Appointment

Prior to last week, Luke has not had any immunizations. I have done some research supporting immunizations as well as some research not supporting giving immunizations to children. When Luke was born, I decided that I did not want to take chances with immunizations.

He turned two a couple weeks ago. I know that he will be going to a pre-k program in two years, so (with much reservation) I took him to get his first immunization. During the appointment I expressed that I was worried about it because I didn't want to ruin the good thing we had going. Luke spent the first 15 months or so of his life chronically sick. He seemed to always be congested and always seemed to have problems breathing. After beginning the gluten free and dairy free diet and giving him supplements, Luke's health drastically improved. He has not been sick since early spring this year (2009). I was worried that giving an immunization would cause his health to regress. Even with my reservations, I chose to allow him to receive the first Hep B shot.

It has been less than a week and he is sick. He is congested and has been running a fever for two days. So, is this just a coincidence? Would he have gotten sick anyway? or... was the immunization the cause of the sickness? I don't believe that the immunization caused the specific illness, but I do believe that it caused Luke's immune system to struggle, therefor, his body could not fight the germ that was introduced this past week. So, now, Luke is feeling yuck, I am feeling yuck, and so is Sydney.

I don't think I have posted my full explanation of beliefs about immunizations. I may have to do that soon.

I have an appointment with Luke's doctor today to talk about diagnosis. I am feeling a bit stressed about. It's a long story as to why I am stressed. I do not wish to share the story. I hope it goes well... I really wish my husband were going with me.

The Answer That Leads To So Many More Questions

Luke scored high on the ESAC. This means that he definitely qualifies for the autism diagnosis. There are two reasons why he scored high on the ESAC; 1. The test is for children who are at the chronological age of 12-36 months and Luke is that age, but he is significantly delayed and acts more like a 6-9 month old baby, 2. He has definite sensory issues as well as many autistic like behaviors.

The autism society's theme, which is puzzle pieces, truly fits what is going on with Luke. Think of it this way- The answer to what is going on with Luke is the big picture, a fully put together puzzle, if you will. We only have a couple pieces of the puzzle put in place and it is a puzzle with, at least, 500 pieces (if not more). We know what it isn't- He is not deaf, blind, or mute. He does not have a life-threatening condition, as far as we know. We speculate over a couple different diagnosis'- autism and cerebral palsy. Autism is more of the academic diagnosis for Luke, while Cerebral Palsy is more a medical diagnosis. So, we know that Luke fits these two diagnosis', yet autism and cerebral palsy leave many huge questions-

-What caused these issues? Immunization maybe given at birth? Medical malpractice? A virus?
-What causes his yellow skin?
-What about the small hole in his heart? Will that heal itself?
-What is his true cognitive ability?
-What is he seeing? How is he prossessing visual information? How is he processing auditory information?
-What medical issues does he have that we just haven't discovered?

It is going to take many years to gather the right puzzle pieces in order to see the full picture more clearly. For now, I will just have to go to each doctor appointment with ammunition ready.

CARD and the ESAC

Last week on Tuesday, a lady with CARD came to observe and evaluate Luke. She said that Luke should definitely qualify for the diagnosis of ASD (autism spectrum disorder). Of course, she does not have the authority to give a diagnosis, so she will write a report and send it to Luke's doctors. She spent two hours with us last Tuesday and plans to spend about 3 hours with us today. She wants to make sure that she is thorough and can make good recommendations based on 5 hours of observation and completing the ESAC. I really appreciate the fact that she is moving slowly and methodically. She seems like a really good lady. She has a daughter who has been diagnosed with autism, but also has other things going on. She knows how we feel.

We all know that autism is only part of what Luke has going on. It's only part of the picture. We know that there may be a Cerebral Palsy diagnosis.There is also something genetic going on. It may takes years to find out the specific information about it. We also know that there could be some other health issues. Carol is going to give us a list of suggestions to talk to Luke's pediatrician during his well-child visit. I will update the blog again after our visit with Carol today.

Baby Showers

I have been to at least 10 baby showers this year. Everyone is having babies. I have now realized that baby showers bother me a bit emotionally. Don't get me wrong, I am so happy for the ladies who have had or are having babies this year. I know they are feeling great joy. I remember what it was like. I just find myself getting upset after these events. I told my mom this today. She seemed shocked. It's ok. Luke is a great joy in my life, but he also a traumatic event in my life. This is going to sound really bad to people who do not have a child or children with disabilities. It is how I feel, though. It is traumatic to me to know that I will never have the same kind of relationship with him that other mothers have with their sons. It is truly sad to me. I have an interesting relationship with Luke. Sometimes, I know that he knows me. Other times, he barely seems to care about my existance. I feel powerless. I feel not needed, yet I know that I am needed.
It is a constant fight between my optimism and my fears and pain. It is something I go through in my head daily. Then, I feel guilty for even going through it. There is no talking myself out of these feelings, though. I have tried it. So, if you are one of the ladies whose baby shower I have attended this year, please do not feel sorry for me. Please do not feel awkward around me. I may have some pain in my life, but I do count it all joy. This is something I was meant to do. I was meant to be Luke's mom. I was meant to go through this so I might understand what other mothers of children with disabilities have gone through and are going through. Yes, I do acknowledge my pain. I do acknowledge my fear, but neither my pain or fears are running my life. I have faith... even without sight.

Updates and Cool Stuff

Luke is doing really well! He has started crawling on elbows and knees. He's pulling up on his knees. I am so glad that he doesn't take the seizure medicine anymore.

Logan is going into 2nd Grade. Sydney's going into 1st grade and Gracie's going into Kindergarten. I can't believe how fast all four of my children are growing. School starts in a couple weeks and it has gotten me thinking about what I want for Luke this next school year. I want him to receive therapies that are more tailored to his communication delays. He gets PT, OT, and Speech, but the speech therapies do not provide him with a way to communicate his needs. I want him to learn some signs. So, he could tell me if he wants milk or water, or if he wants food or if he wants a specific toy.

This is where the diagnosis comes in. He cannot receive those tailorized services without an autism related diagnosis. So, I met with his neurologist who says that all of his genetic tests have come back normal and it may takes years (and a lot of money and traveling) to figure out what syndrome Luke has. We don't have the money to travel the world trying to figure it out. He told us that it isn't life threatening, so we could wait. I then asked him why no one has talked to me about autism. He acted shocked. I read him my list of reasons I believe Luke has autism and he finally agreed. He would not diagnose, though.

This month he will have his well-child check-up and I am going to bring my list to his pediatrician. We are having to take baby steps, but at least we are moving forward!

Other exciting family news-
Sydney learned how to ride her bike without training wheels this past weekend. She also learned how to tie her shoes. I got a part time ESOL position in Escambia county and will be going back to school this fall. I will be pursuing my Master's Degree.

Missing Luke

After work Thursday, I left with my two girls and my mom and dad to go Tampa. The reason for the trip was to visit with family and go to my cousin's wedding. My husband, Luke, and Logan went to Georgia to visit his family. I enjoyed my trip to Tampa. I needed that time with my family. Marty enjoyed his trip because he needed time with his family. It has now been 5 days since I last saw Luke, and I am missing him terribly. The girls and I are back home and the boys should be coming in during the next few hours.

This is the longest time I have ever been away from Luke. I miss him. It has given me the opportunity to look at a lot of things by taking a step back. It has helped me gain strength.

The ESAC

I received a call from a lady with CARD (the Center for Autism and Related Disabilities) the other day. Luke's Early Steps (a local early intervention program) teacher had refered him to be evaluated by the lady. She is going to do the ESAC (the Early Screening for Autism and Communication Disorders) with him. She will come a couple of afternoons for a couple of hours. She will ask questions and go through the screening. I am really excited about this. I feel like we are moving in the right direction.

While Cerebral Palsy is a fitting diagnosis, I believe that Autism is what Luke really has. I have gotten so frustrated with his doctors. His pediatrician and his neurologist have children with autism, but they refuse to even talk with me about autism. His pediatrician had a hard time dealing with her son's autism diagnosis. To this day, she still thinks he has a syndrome, but really disagrees with the autism label. When I take Luke to see her, she dances around the autism subject. She will admit that he has "autistic behaviors", but will not diagnose him with autism. His neurologist will not even talk to me about it. So, if he has "autistic behaviors", wouldn't that be good enough for an autism diagnosis? Then, he would be able to received specialized services for the disability.

So, he turns two on August 21st this year. He has an appointment with his pediatrician and his neurologist. I am going to those appointments with guns blazing. We'll have the ESAC evaluation paperwork. I am also going to be sending in a video of Luke to both doctors. I am done dancing.

The following are the reasons I believe autism is the correct diagnosis-
1. He makes little to no eye contact.
2. He flaps
3. He self stems (ie; tapping toys against his teeth, tapping his teeth against hard surfaces)
4. He is developmentally delayed (which could mean other disabilities also)
5. He does not talk, yet he screams
6. He stems vocally (mmmm sounds)
7. He usually wants to be left alone (he does not seek out social interaction)
8. He likes fans and lights (really all things that are bright and spin)
9. He engages in repetitive play (pushes the same button hundreds of times, does the same thing over and over again, etc.)
10. He is hypotonic (low muscle tone)- This could be genetic. I am not Ms. Toned Muscle myself.

There are probably some other things, but come on! I mean, really! Autism should at least be on the table as a diagnosis.

Pure Happiness

I have gotten to spend most of the evening alone with Luke. It has been refreshing. Our afternoon together started off with a surprise-

I picked up Luke from Mimi and PapPaw. When I walked in the door, Luke was playing in his "gym". His "gym" is his room at Mimi and PapPaw's house. They have all his toys on the floor so he can play with them. I went into the livingroom, which is down the hall and across the kitchen from his gym. I talked to Mom and Dad for a while and then I thought I heard Luke's little voice in the hall. I got up to look... He was crawling towards me! He heard my voice and wanted me. When I picked him up he screamed and smiled. He got so excited.

So, I drove him home and fed him dinner. I have been on the floor with him for a while. I know not to force it with him. He doesn't like to be crowded. I just let him be, and he crawled up to me and snuggled my leg.

I celebrate every little victory. The little things are HUGE to me! Yeah Luke!!!!

The Little Boy Who is Teaching Me About My Son

I have been working closely with a little 3 year old boy who is autistic for the past week or so. Knowing him has changed my life. He is a tiny, brown hair little boy with pale skin. He talks a little bit. He can name some animals and he can say "No!". He came to me not knowing how to request something that he wants. He would take my hand and lead me to the object of his desire, but he could not request it verbally or with signs. I learned quite quickly that he liked to squeeze things, especially when he was frustrated. For example, if someone wouldn't give him what he wanted, he would pinch. If he was feeling frustrated with me, he would find the nearest piece of my skin and squeeze. I quickly found a squishy ball to replace my skin :)

This little boy loves pressure. He loves to press his face against me. He loves hugs. He loves to be squeezed when he hugs. I have noticed that Luke likes the same things. So, I went home and hugged Luke. I squeezed him tight and said, "Mommy loves Luke". His reaction was priceless. He smiled and laughed and squeezed me back. The little boy I am working with has taught me how to bond with my son.

I love each of the four boys that I am working with. They have such a hard road ahead of them, but the right teachers can make all the difference. I am hoping that I will have as big of an impact on them as they have had (and will continue to have) on me. They are helping me face the reality of having a son with a disability.

Sippy Cup Victory!

I have finally found a sippy cup that Luke will drink from!!!!! So, no more bottles! I was bound and determined to get him to the place that he would drink from a sippy cup by his 2nd birthday. Luke beat my deadline. I want people to view him as a two year old and not a baby baby. Marty says I shouldn't worry about what others think, but you know what, I do! I am sorry, but I do care what others think. I do not want to be viewed in the wrong light. I do not want my children to be viewed in the wrong light either. IT MATTERS!

Refreshed

I spent the day with my two girls today. We took our puppy to the vet and went to Target to spend tooth fairy money. I am finding that shopping is theraputic. The girls bought some items from the dollar section and I bought them summer camp appropriate shorts and shirts. They are going to Santa Rosa Christian this summer. They have strict dress code rules, so I had to buy the girls shorts from the boy section. I hope they'll forgive me :)

Gracie and Sydney love to brush my hair, "play lotion", and put make up on me. They are so cute. They will fight over which side of my head belongs to them. I really needed this time with them. Now I feel refreshed and ready to face any challenges that may come my way...

Here is what Sydney wrote to Jesus today- "I love Lord. He has blessed me. When I call Him he comes to me". She accepted Christ on July 16th, 2008. She knows her Lord. Gracie is getting there too. She is beginning to understand Christ's love for us. :)

Not Forgotten

It is so easy to become consumed with all that is going on with Luke. There are just so many questions in my mind. I spend so much time thinking about everything. I have noticed that my other three children are engaging in some quite dramatic attention seeking behavior. It has kind of shook me back into reality. All of my children are equally important. They have all changed my life. They all deserve so much. I guess we are all learning how to act in a large family. I was an only child. My husband was one of two children. Our children are getting used to it also.

I am sure my children have noticed that I am really distracted. They are also hating the fact that I am working this summer. I guess I feel a bit guilty. I hope that all of my children know that I truly love them. I need to learn how to meet the needs of my children. Now, I realize that I am not capable of meeting all needs. I do need to clear my head and allow myself to truly enjoy what God has given me without worrying about the cares of my life.

Total Awesomeness!

Just a few minutes ago Luke did this! He pulled up to the table in order to get his bottle (major reinforcer!). He tried for about 5 minutes, then became frustrated and fell back on his bottom. He then did something great- he tried again. He actually walked on his knees to get back to the table to try again. This time Marty moved his bottle closer so he could get it.

He is a totally different child since being off his seizure meds. He interacts more and cuddles more and makes more noise. It is truly fantastic! To see my son act more like the boy I know him to be has brought me so much joy! Yes, he still has strange behaviors and he still does not communicate with words... but... he is communicating with actions now. He is looking at what he wants and moving towards it. He is noticing the world around him. He now notices the leaves in the trees and his siblings. He is truly an awesome little boy and I look forward to seeing him grow... Then, we will give God the glory! God has been good to us. God has been good to Luke. I guess I am just realizing that now. I have been so confused as to why Luke had to go through this. Now, I truly believe there is a higher purpose. There is a plan. There is NO coincidence.

Tests that Led to More Questions

So, One great thing came out of the three day testing that took place. We found out that Luke is not having seizures! How awesome is that?! It is a total answer to prayer. He no longer has to take meds. I noticed a couple things while he was not on meds during the testing- he smiles, laughs, makes some eye contact, and tries to communicate a bit. It is awesome! So, thank you Lord for an answer to prayer~

The one frustrating thing is that the testing really didn't provide any answers. We know what is not wrong... we just do not know what is wrong. It is frustrating. I really want answers~

We're Beginning to Talk About a Diagnosis

Luke had an appointment with his nuerologist yesterday. We still do not have results from the blood work, urine work, EEG, and MRI. It is frustrating. I so badly want answers now. I need to wrap my head around something, deal with it emotionally, and move on. I am almost feeling angry. One thing was said during the appointment that totally shocked me. The doctor said she would feel comfortable giving him a diagnosis of cerebral palsy. When I thought about someone with CP, my mind automatically took me to experiences with people in wheelchairs who do not use their arms, hands, legs, and feet. These same people also cannot communicate. Luke just doens't fit into that group of people. He uses his arms and hands and he at least moves his legs and feet. I really didn't respond to what the doctor said. I really didn't know a whole bunch about CP.

I called Marty after the appointment. He didn't want to talk about it. I then talked to my mother who told me that she had been thinking this all along, but also knows that doctors give the CP diagnosis when they don't know what is really going on. Mom is always so good at helping me find peace.

So, I went online and looked it up... and actually, I was quite surprised to find the diagnosis is pretty right on. I am looking forward to see if the MRI and EEG support the theory that Luke is CP. Here is some CP information I have found...

What is Cerebral Palsy?
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse.

Is there any treatment?
Cerebral palsy can’t be cured, but treatment will often improve a child's capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Treatment may include physical and occupational therapy, speech therapy, drugs to control seizures, relax muscle spasms, and alleviate pain; surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers; and communication aids such as computers with attached voice synthesizers.

What is the prognosis?
Cerebral palsy doesn’t always cause profound disabilities. While one child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, another with mild cerebral palsy might be only slightly awkward and require no special assistance. Supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.

What research is being done?
Researchers are investigating the roles of mishaps early in brain development, including genetic defects, which are sometimes responsible for the brain malformations and abnormalities that result in cerebral palsy. Scientists are also looking at traumatic events in newborn babies’ brains, such as bleeding, epileptic seizures, and breathing and circulation problems, which can cause the abnormal release of chemicals that trigger the kind of damage that causes cerebral palsy. To make sure children are getting the right kinds of therapies, studies are also being done that evaluate both experimental treatments and treatments already in use so that physicians and parents have valid information to help them choose the best therapy.

3 day trip to Sacred Heart Hospital

It has been a long three days. Luke's EEG has turned out to be a 48 hour test. He has wires hanging from his head from a modified ponytail. He has been such a little trouper. He has been poked and prodded and still manages to enjoy himself. Luke has had a couple "staring" seizures, but has not had a major episode. The whole purpose of the EEG is to identify what Luke's seizures look like. I am frustrated. It's as if I am praying that Luke will have a seizure so that we will know what it looks like. The EEG will also help us see if he is epileptic. The doc came in this morning and asked us if we would want to stay for another 24 hours to increase the chances of seeing one of his major episodes. See, not only is Luke hooked up to a computer, he is also being recorded on a web cam. So, Luke has to stay in his little hospital crib.

I really want to go home. I am tired. Marty is tired. Luke has actually acquired a snotty nose and a barking cough since being here. I hate hospitals, but I want answers. What is the right thing to do? Should we go home and let Luke rest before having to come back Monday for an MRI? or should we stay to try to catch a seizure? I really don't know! I wish I could just take a walk with God and get an answer. If only it was that easy!

Frustration and an Update

We have not received any information about the genetic tests at Shands. It is frustrating. No one knows what is wrong, yet we all know something isn't right. He had blood taken at Nemours in Pensacola to test for allergies. The results have all come back negative. He is not allergic to several things- pet dander, pollen, etc.

So, Luke has a new neurologist now. I like him much better than the man he went to for the past year. The new doctor is thorough and kind. That is always appreciated. The doctor wants us to voluntarily admit Luke to Sacred Heart Hospital in Pensacola for three days of testing. He will have an MRI of his brain, blood work, urine work, and an over-24 hour EEG (brain wave observation). We plan to take Luke in on May 28th and stay until May 30th. While I am choosing not to worry, it is quite nerve racking. I am in prayer... constantly.

We have moved to a new rental. Luke loves to get on the floor and explore. He "army crawls" all over the house now. He is also putting small things into his mouth. We are finally having to baby proof the house. It's a good feeling :) I am proud of Luke. He is strong willed. That will prove to be a good thing in years to come.

People Who are Truly Strong

So many people see disabilities as a sign of weakness, but it is not. These people have gone through numerous tests and have been poked and prodded their entire life. They stand up in the face of doubt and discrimination. They are truly strong.

Luke has been through so much in 19 months. He has so much more to go through. Even though he has had some issues, he continues to be bright and sweet. I am the one who is weak.

There are people in this world who need to change their way of looking at people with disabilities. We have so much we could learn from all of them. They are, first and foremost, PEOPLE. Their disability is only a small part of who they are.

Update

Luke had his appointment at Shands in Gainesville, Florida this week. We met with the doctor and a genetic counselor. I had a notebook with me complete with all needed information and family health histories as well as pictures. The doctor did not tell us anything we didn't already know. Luke has obvious neurological issues, but looks completely normal otherwise. They took blood while we were there. They are going to do a more in-depth look at chromosomes. It will take two weeks to get results. (Another week and a half to wait). The trip was quite emotionally draining for me. I wanted answers. I am just going to have to be patient and wait.

Luke also had an appointment with a Rhumatologist today. They took blood also. The doctor wants to see if there are any allergies present. They are also testing for immune system difficiencies. We have a week to two weeks to wait for that.

The next step is an appointment with his new neurologist on April 7th. The Genetics doctor wants an MRI of Luke's brain. This will show if there is any atrophy. It will also show the effects of the seizures on Luke's brain.

So, more testing for Luke. I hate that he has to go through so much, but I do feel that we need answers as soon as possible. I want to make sure we can do all we can to help him.

Anxiety

Luke's genetic study is coming up in a few weeks. I can't say that I am feeling peaceful about it- I wish I could. I just so badly want some answers. This study could give answers, but the again, it may lead to more questions.

It is so hard to relate to Luke. Sometimes he is right there with us and other times he is in his own world. Tonight, for the most part, he was in his own world. I wanted and needed to hold him but the only time he would give me was when he was drinking his bottle.

I am so torn. Some people tell me that, because I am a woman of faith, I shouldn't worry, fear, grieve, or feel sad over the situation with my son. Others tell me it is ok to let myself feel the pain of this. Who is right? Who is wrong? I am conflicted. I worry. I fear. I definitely feel the pain of this situation... even though I try to keep a positive attitude about this.

Truth be told, I have never felt so much pain. This is my son... my flesh and blood. There is something wrong and I can't fix it. There is a high probability that, by the time it is all said and done, he will have a list of diagnosis' and disabilities. I so much want to have a real relationship with him. I want him to call my name. I want him to crawl... and walk!

I just want to feel ok with all this...

It's been a while

It has been a while since I last posted. My boss, the principal at my school, asked me about Luke today. I had to say that he is doing so well. He has got the love of Jesus all over him. He smiles and laughs and is a mommy and daddy's boy! He loves Marty. The moment he hears Marty's voice, he does all that he can to grab daddy's attention. I know he loves me also. He has begun to cuddle. He will lay his little head on my shoulder and I know that life is good at that moment. I know my son needs me.

The neurologist upped Luke's seizures meds. That is the best thing that could have happened at this point. Since the med change, Luke has been making more eye contact, army crawling with real purpose, babbling more, and becoming interested in his surroundings. I really believe that God is working in Luke's life. I see the grace of God in our situation.

I am still so proud of my little boy. He is amazing!

Awesomeness!

The neurologist increased Luke's seizure medication. This has been such a great move! Luke has started really working on crawling. He is doing the "army" crawl now. He has also started eating table food. He has eaten grits, potatoes, cole slaw, green beans, and banana bits. I am so proud of my little boy. He is sitting up, and trying to stand up. He has grown so much in just a week! He went from having full blown seizures to growing by months developmentally. I am so thankful to God!

Behaviors

I took Luke to the mall today. He was in his own little world the entire time. About an hour into our adventure, Luke started showing signs that he was completely overstimulated. He was making weird noises and weird facial expressions. It is normal for him to act this way when he is overstimulated. What was different this time was that people were staring. I was so very uncomfortable. So, I covered his stroller with a blanket. He calmed down a bit, but continued to act strange for the remainder of the day. Mom says that she is at a place that she doesn't care about other people. I am not there. I do not care what other people think. I care about how people stare. I don't like it.

I dropped Luke off with Marty this afternoon so I could go to the dentist. When I came back home Marty told me that Luke had been having some major seizure activity. As I was making dinner, I noticed this major seizure activity. He was actually frothing at the mouth. I really do not know whether to worry or to just think that it is just something that Luke does. The doctor said to call the neurologist. I put a call into the neurologist, but no one has called back. Sometimes I feel like I am going crazy.

Constant Congestion

Luke has been congested since birth, it seems. Every month, we have to go see the doctor because he is running a fever and has green snot flowing from his nose. I want this to be clear- I HATE SNOT! So, I asked the doctor what could be done. She wants us to take him to an Ear, Nose, and Throat specialist. She also wants a catscan of his sinuses. Now, Luke had an MRI of his brain and sinuses at 3 months. It was completely normal. I wonder what could have changed in 1 year. He was congested back then. Who knows?

So, I guess we'll be able to add a catscan to the long list of tests Luke has endured. He is such a little trooper. He has been poked and prodded and looked at and discussed for a year now. He is still as patient with us as ever. God bless him.

To The Point of OK

I believe that I have reached the point of "OK"... for now. I have spent a week in Georgia getting to know my sister-in-law's 2 month old little girl. I thought that it would be a bit more tough to be with a little one who is "normal". It really wasn't. I enjoyed the fact that I could interact with Kherington and still feel happy. Babies, no matter if they have health problems or not, are true blessings.