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.