The Weekly Visits to the Doctor, Digestion, and The Object of His Affection

The Weekly Visits to See "Dr. Happy"-
Lately we have been spending a lot of time at the doctor's office. Luke has been sent home from school almost once a week since school began in late August this year. There are a couple things he has chronic issues with;
1. congestion, 2. ear infections (just starting recently), and 3. running pooh pooh. Luke has dealt with congestion since birth. Since having his adenoids taken out, he has had congestion less often and it has not affected his breathing as much. This, of course, is a big relief . He has just started getting ear infections. He has had two double ear infections in two months. This means that he has had two big doses of antibiotics.
Luke eats pureed food, so he has runny pooh pooh. This leads me to my next subject- digestion.

Digestion-
During Luke's last visit to the doctor (Friday), the doctor looked at how many times Luke has been sent home from school as a result of his pooh pooh issues. She noticed a pattern and said that we, of course, know that he has an "unknown syndrome" and does not surprise her that new health related and behavior related issues have begun to show up. These new health related issues are probably a part of the syndrome that has not been identified. The doc hypothesizes that Luke's body is not digesting foods that contain carbohydrates. This is something we agree about. I have also hypothesized that he is not digesting properly. So, now, his last poopy diaper is wrapped up tight and is in a ziploc bag in the refrigerator. It will be delivered to the doc tomorrow. I am actually hoping that it will give us some answers. Hopefully, all we will have to do is make some dietary adjustments. At least it gets us moving in some sort of direction. This now brings me to my last subject- The Object of Luke's Affection.

The Object(s) of His Affection- Our Walls.

Not only is Luke scratching our walls with his little fingernails, he is now licking the walls and using his teeth to scrape the walls and eat the paint. I, of course, stopped him, but he keeps going back. If it's not the wall in the picture, it's the corner of the wall across from him or in the dining room or in the bathroom or in his room or it's the wall in his sisters' room where a basket sits with books in it. He loves baskets also, but they pose less of health threat to him. 

I am upset. Two new things have come up. We first think about having to change his diet so he can digest his food. We now have to think about completing a Functional Behavior Assessment (FBA) on my son for this wall licking, biting, and paint eating behavior to keep him from doing this brand new behavior. It's one thing if he uses his nails. It is completely different now that I am seeing him eat the paint he licks or scratches off. 

What's next, I wonder. 

I am thinking that I need a break. I don't think I can handle worrying anymore. He was making so much growth. Now, we seem to be regressing. I don't know. I am just upset.

Blah

My anger has gotten the best of me lately. I have tried to talk myself out of it or think myself out of it, I guess. I am worn out. Being a teacher of children with autism has given me a huge shot of reality when it comes to Luke. I focus on the positive or I try to, for the most part. I accept that he is different, yet I find myself feeling sad. What a mixture of emotions. Thank you, Lord, for making me a woman.

My older three are having problems of their own. Behavior and academics are challenging. I often overreact because I do not want anything bad to happen to them. Any problems that are occurring, I want fixed- immediately.

I am blessed with my job. I am successful. I have worked hard. Family life is challenging. Really, the challenge is the turmoil that is going on within each of us. We have a blended family and each of us have our own unique personality and inner challenges.

So, why write all this junk? I want to remember the challenges. I do not want to dwell on them, but I do want to remember where I have been so that I can remember who has brought me from that place. Growth cannot occur without questions and emotions. How can you discover who you are and what you believe in without questioning? We teachers have learned, through much education and training, that it takes questions to learn. You must ask higher order thinking questions in order to help others find the answers in themselves. So, this blog is an answer to the question, describe how having a child with disabilities has changed your life for the better and what challenges it has presented. Describing my emotions- the good, the bad, and the ugly- has allowed me to understand what God has really done in my life.

He has given me the direction that I have prayed for. He has provided the drive I have needed to succeed. He has also provided the grace and mercy to cover the many mistakes I have made a long the way. Logan, Sydney, Gracie, and Luke have shown me what true love really is. God gave me my children to help me discover how He loves me.

My Buddy Who Has My Heart :)

Luke and I have so much fun together. He's been my little "water buddy" for a while. When he was a newborn, he expressed that he hated water. I just thought it was a newborn thing, but several months later, he was still freaking out during bath time. I was realizing that it was not just a boy thing or a newborn thing, it was a sensory thing for Luke.
Kids with disabilities have sensory issues. Some are extremely sensitive to noise. They cannot endure loud noises. Something inside their brain goes into overload when they in a loud environment. Other children with disabilities have sensitivities to bright light. The bright light overstimulates them and they become scared. Luke has touch sensitivities. He is especially sensitive with his feet. The first time he stood on grass with his feet, he flipped out. His therapists would try to rub his feet with beans and rice. It was torture for him.
Bath time was torture for the longest time. Even if his water was luke warm, his skin would turn bright red. His hands and feet would look like they had been dipped in boiling water. Since I new it was sensory problem, I decided to try a little therapy of my own. I started taking baths with him. He would lay on my chest and I would gently wash his body. Once he grew comfortable with this, I would physically take his hand and teach him how to splash. He soon was laying on my chest and splashing at the water. So, I moved him so that he was sitting in the water. We continued the splashing. It took a year, but we finally reached the point that he would sit in the water without me being in the tub with him. Now, there is no fear or discomfort. Only when I spray his face (by accident) with the shower head does he fuss. I am so proud of him.

This experience with Luke taught me so much. I now teach pre-k aged kiddos with autism. Each of them have their own specific and unique sensory needs. I know, from experience, that all I have to do is provide repeated exposure to situations that are uncomfortable for them in order for them to change and grow.

Having Luke has also taught me how to treat the parents of my students. I think back to how much heart-break I went through. I have felt pain and fear. I can see this is the eyes of my students' parents. So, I am planning a "Fall Celebration" for my students, teacher assistants, parents, grandparents, and front office staff. We will have turkey and dressing and mash potatoes and mac and cheese... and of course, we will have McDonald's McNuggets :) We all deserve a little celebration!

Another huge step in the right direction

Luke's teacher sent me a video text today. The video was of Luke eating snack. He was feeding himself, out of a bowl, with a spoon. It brought tears to my eyes. He has started walking with assistance and is feeding himself. Just a little over a year ago, he wasn't even sitting up without support, yet he has grown so much in the past six months.
God has done a great work in my life. He has done a great work in Luke's life. He has been there, holding us. The past couple of years has been full of ups and downs, and we have become stronger because of them. I guess that is part of being a Christian. We all know we will have trials. The difference is that we have true hope. We know we may be riding the waves of life, but we also know that we will stay safe because it is Jesus who will calm the waves.
It is so hard to not know what is really going on with Luke. In some ways I would like to have a group to belong to. A group to advocate for. Amazingly enough, God has given me that through my profession. He has given me hope through seeing Luke grow. He works it out. He knows what we need and what to do for our individual situations.
It is amazing what one small miracle can do for a family. Thank you Lord for giving us hope!

Our Answer to 18 months of prayers

My prayers were answered yesterday. My mom has told me how the teacher assistants in Luke's classroom have Luke walking up and down the long halls in his elementary school building. I got the brilliant idea to test it. We pulled into a parking spot that was a short distance from the sidewalk leading to the preschool building. We got him out of the car and into his gait trainer. With only a little belt to provide physical prompting, when needed, I started walking with Luke as he gingerly stepped onto the concrete parking lot.
Each foot of travel seemed to energize Luke. He was smiling and laughing and high stepping. He was really happy for himself. He made it all the way to the preschool building and wanted to walk more. So, he walked to the door of his room. I was so happy to say that he had walked into church this morning. It was truly a tear-worthy moment.
I had planned on venting my emotions, but praising God is such a better option! God gives me hope that this won't be the last miracle and it definitely won't be the last answer to prayer.

The Broken Record That Plays

Every doctors visit is the same. "He obviously has a syndrome.", they say. We might not ever find out what it is because all tests have come back normal. I no longer make appointments that are not really needed. We no longer have testing done unless there is a true medical reason. Many other parents would be happy with the fact that their child does not have a diagnosis. A diagnosis doesn't change a thing. It just gives a name to what is going on with your child. For me, hearing the broken record play over and over again makes me feel a bit hopeless. Saying something like "He has autism." or "He has _____." would give me a way to explain why my child acts the way he does. It shouldn't bother me when people look at my child with questions in their eyes, yet it does.

I can't explain why I feel the way I do. I feel hopeless in my situation with Luke, yet I have so much hope because of my God. How is it that I can feel two separate ways? Am I not a true Christian because I feel pain and I grieve over my son? Questions that will no longer matter once I reach heaven's gates flood my mind constantly. Ah, this human nature- it is joyful and painful.

Luke enters Pre-K in two weeks. I am anxious. He is my baby. He is my last born. I want to shelter him. I know, in reality, that I cannot shelter him forever. God bless parents of children with illness and/or disabilities. God bless the mothers who long for answers. I am thankful for the hope of heaven. My sons and daughters will be made whole in God's presence. I will be dancing and singing in the Hallelujah Choir.

Being a Parent

Luke will be 3 on August 21st this year. Two days later, he will enter the ESE pre-k class where his brother and sisters go to school. How is it that the first three years of his life have passed so quickly? I think back to all the challenging times and all the times that God showed us who He really is. The first year of Luke's life was consumed with the realization that something was not quite right. My mother and I agreed that he was "neurologically young". Honestly, it felt like a nightmare that I couldn't wake up from. From a relatively young age, I always felt in my spirit that I would one day have a child like Luke. I began writing this blog because I desperately needed a way to work through my feelings. I needed a place to put my feelings down and walk away. This blog provided that for me.
During Luke's second year of life, I felt the need to know what was going on. We went from doctor to doctor, place to place, trying to find an answer. Many tests were done. The only conclusion was that you had an abnormal EEG. As a result, Luke was put on strong seizure medications. These medications made Luke seem like a zombie. His eyes were open. He moved a bit. He had no personality, though. It made it impossible for us to bond with him. Honestly, I went through deep depression. I was grieving for my child.
Shortly after Luke turned 2, we found out that he had not been having seizures. He spent a year of his life on medications that he didn't need. He was taken off of the medications and his life changed. He changed. He began sitting up and smiling and laughing. His personality began to develop. He began crawling and standing. He pulled up and reached for things he wanted. He began to explore his environment and play with different toys. He has come so far and his personality is so bright! So, I openly share what God has done is our lives. I do not think anything is a coincidence. Every good thing happens because of my God.
So as we are approaching his third birthday, I am still wanting answers. While Luke has come so far, it is still extremely evident that an autism diagnosis would be appropriate. The two doctors that Luke sees consistently have spent three year avoiding me- avoiding the questions. I do not think that a diagnosis of autism would be the end all, but I do think it is appropriate.
I have found many ways to work out my frustration, anger, guilt, and grief. I write. I have taken 4 classes towards my Master's Degree. I have had to take a break, for now. I have obtained a job working with pre-k kiddos with autism. I have reached out to other parents. I have volunteered at Kids for Camp in order to create a book to be used in classrooms. I have networked. So, I have some hard feelings to deal with, but I have chosen to do anything in my power to help others who are going through this.