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.