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.

Wow- I Don't Update Enough!

Luke is enjoying his summer. He has started sleeping in the toddler setting of his bed. He is enjoying being outdoors and watching the trees. He also love to swim. What a change! He used to loath water, now he has to always touch it and play. I am so thankful for the growth. He is also eating a wider variety of foods. He ate his first peanut butter and jelly sandwich this past week while on the way to Waynesboro. He is chewing better and moving his food around his mouth with his tongue. His oral motor skills are improving. I give glory to God for all the strides Luke is making this summer. When I think about all of the positives that are occurring, I just can't help but totally know that God is in control. He should be glorified!

Luke received his new gait trainer a little over a month ago. He is not responding very well to it. He is in denial of the fact that his old gait trainer is gone and he has to deal with the change of a new one.

We will get him walking, though. It will just happen. Just as everything has been- we pray, we wait, we praise.

There are a few new challenges. I have spent quite a bit of time quietly observing my little guy. I watch his face, his head, his hands, his arms and legs, and his feet. I quietly listen to his little voice as he yells, says "Dadada!" or "Bababa!". I watch him as he turns his eyes to the ceiling and shakes his head side to side quickly and laughs. I watch as he flaps and waves his little hands when he gets excited. I watch his sweet little facial expressions that are uniquely Luke. He cuts his eyes over as he looks a suspicious person or item up and down. He fakes a smile when he is considering his options. He laughs out loud as he hears a loud sound. He panics when he falls and it hurts. I watch him as he falls asleep. Only in those moments he looks at me as if I am the only person in his world that matters. My heart melts.

I watch him become frustrated with his feet. I watch as his facial expression changes and he bites his hands because he is feeling stress. I experience the new biting behavior and realize that he is only expressing himself and he will need to be taught a replacement behavior. Most of the time, I watch my little one from a far and notice how much time he spends engaging in self-stimulatory behavior. My head tells me why you do this. You find pleasure in scratching walls and baskets. You like the way it feels when you move your head back and forth vigorously. My heart continues to wonder- What do you see? What do you hear? What do you feel when you reach your little hand out?

So, emotions just seem to take over. I am hopeful, yet I hold back. I don't want to be the one putting limits on you. In my eyes, you have caught the moon and brought it down for me to explore.

Emotions

My emotions are kind of up and down right now. On one hand, Luke is making great progress. He is taking steps, becoming stronger, exploring his environment, and becoming more vocal. On the other hand, I am becoming worn out and frustrated with the lack of progress in other areas. His eating and meal time behaviors can get old really fast. He spits and chokes and coughs. By the time I am done feeding him, I have food all over me. Also, I know that he knows how to drink appropriately from a sippy cup, yet he always gets his almond milk all over himself. So, this blog is meant to give me an outlet for my frustrations, while helping other people understand how frustrating it can be for a mother with a child with disabilities.

I spend most of my time focusing on the miracles that occur with Luke- his walking, vocalizing, etc. There are times, though, when I must allow myself to write through my negative emotions in order to get over them and continue focusing on the positive. I find myself feeling anxious right now. We have started the process of enrolling Luke into a ESE Pre-K class at Berryhill Elementary. I have had a transition (meaning going from Early Steps into the Santa Rosa County Schools) meeting with Luke's Early Steps team. Luke was successful while being served in Early Steps. They helped him get into occupational therapy, speech therapy, and physical therapy while providing in-home services once a week. We talked about what my goals for Luke are now that he will be entering Pre-K. Some of the things I want him to learn are; (continuing) walking with a gait trainer, feeding himself with a spoon, attending to an adult in order to receive instruction, attending to pictures, books, and toys, manding (asking for items using sign language or a vocal), imitation skills (clap hands when adult claps hands), using pincher grasp to obtain small items (cheerios or other finger foods), and sitting at a table during meal time with appropriate sippy cup behavior.

All of things are going to take consistent work and follow through. He has learned to throw little temper tantrums in order to escape from what is being asked of him. His teacher will just have to push through it. I am so thankful that his teacher has agreed to work with him. I just know that we are going to see a lot of growth this coming school year (2010-2011)! We have an IEP (Individual Education Plan) meeting coming up on Friday. This is where I feel a bit of anxiety. I have sheltered Luke for almost three years now. It is almost like I was ready to tell the world that I have a son with a disability. I have accepted it, yet I just haven't been ready to share with people in education. Educators tend to look at everything with a critical eye. We pride ourselves in being able to point at a kids and say, "He has this..." or "He must be that...". Now, I am sitting on the other side of the table. Now, I see how destructive those behavior are. My child is going to be the one pointed at and discussed in the teacher's lounge. By the end of the school year, he may have a laundry list of disabilities (labels) tacked to him that will travel with him during his career as a student.

What an awful feeling this is. I have asked God to forgive me for any times I might have acted like that. Now, I look at things so differently. My heart is burdened for parents with children with disabilities. Their lives are a constant battle, yet they can see where God has moved. They have to constantly battle feelings of inadequacy, disappointment, and guilt. I am so thankful for my walk with the Lord. It is through Him that I find my strength to work through negative emotions and find the miracles in our everyday lives.

Luke Walking

This is a picture of Luke while he is physical therapy. He is walking! He uses a gait trainer and his legs are getting stronger every day! He fusses a bit during PT, but he has come so far in the past year. A year ago, he wasn't even crawling! We were still working on sitting without assistance. Now, he is taking steps. The new goal is to strengthen his legs and work on stamina. He has taken 18 steps at a time and has walked down the hall in the therapy center. I am truly looking forward to the day when we receive our gait trainer and he can walk into church by himself. I give God the glory for how far Luke has come and I know that Luke will go even further than we can imagine!

A Hilarious Moment!!!

This morning, Luke was complaining rather loudly about the fact that it was taking so long for his oatmeal to cool off. After several minutes of this, I told him to "Put a sock in it!". A couple of minutes later, he crawled up to me with a pair of socks in his mouth! I couldn't help but laugh at him!!! It was so funny. He even posed for me with the socks in his mouth while I took a couple pictures! He definitely has a great personality!! :)

Good News!

It looks like Luke is going to be able to be a Berryhill Bear next year! God is giving us favor!!!!!!

Adenoidectomy

Luke had his adenoidectomy last Thursday. It was scary for me, I must admit. I just hate it when I know my kids are in pain. He did so well, though. In this picture, Luke had just been put into the recovery room.






After a couple hours in the recovery room, we were able to take Luke home. He wanted to be held for almost two days straight. I was finally able to put him down in the recliner for 20 minutes at a time on day two.

Since then, he has been running about a 101 fever and has been a bit grumpy, but he is already responding differently. When I call his name, he looks at me. Yesterday in Sunday School, I was holding Luke and he actually reached out with arms and body to his daddy. He wanted Marty! This is huge for Luke... He hardly every does this!

So, I am really happy with how things are going for Luke. We also found out that insurance will cover his gate trainer (walker for children with disabilities)! I am looking forward to the day when Luke can walk into the doors of the church and move into a room with kids closer to his own age in nursery. God is good!

Discovering What Love Truly Is and An Update

WHAT LOVE IS: My love for Luke gets stronger every day. Bonding with Luke has been a different experience. The moment my girls were born, I felt a strong bond with them. Luke's birth was more traumatic. I think I even went through some sort of depression after his birth. So, I did not automatically bond. I knew that I loved him and I was committed to being the best mother I could be to him. I just didn't have that strong connection with him like I had with Sydney and Gracie.

Now that he is almost 31 months old, I feel a closeness with him that is unlike anything I have ever experienced. He will cuddle with me now and he will even reach up for me to pick him up. Those moments are the best! So, this journey with Luke has taught me so much about life. I am so grateful for the experience :)

UPDATE: Luke has really grown lately. He is now almost 26lbs and he will stand in a gait trainer for 15 minutes without help. He is learning to request items and actions also. This requesting is called "manding". When he mands, he signs for what he wants. He now mands for "up". We are working on "eat" and "drink" also. He also tacts "Baby". Tacting is just another word for labeling. I have a book with a baby on the front cover. I will say to him, "Luke, touch the baby". He will look at the baby and put his hand on it. This summer we are going to work on teaching Luke to use a spoon to feed himself. I am so happy for him. He is making good decisions that are leading to growth.

He is also doing something else that is new and can be viewed as good and bad- He is throwing fits! He is learning to assert himself. He will sit and rock back and forth and throw his head back and yell when he doesn't get what he wants. He also throws fits when we push him to do something that he doesn't want to do at that moment. So, it is good that he is asserting himself. Now, we just have to treat him like the rest of our kids and not let him get away with this behavior :)

I no longer say that I am proud of my kids. I now say that I am happy for them. If I say that I am proud, they may think that when I have to discipline them, I am no longer proud. When I say I am happy for them, it puts the ball of responsibility in their court. When they make good decisions, I am happy :)

Getting the Ball Rolling

This picture was taken by Mimi yesterday during Luke's therapy. Look how well he is doing! I am so happy for him! He fussed the entire time, but he is strengthening his lower body.

So, my mother, Marty, and I are getting the ball rolling for Luke to be enrolled in school next year. We are going to observe in some local classrooms and set up meeting, so we can be as informed as possible when making choices.

It is really interesting. Enrolling a child with special needs in a school is a totally different beast than enrolling a typical child in school. We are already starting the process now, in February, so we can set up IEP (individual education plan) meetings in May, so he can attend school on the first day of school in the fall this year. This process is taking a lot of mental energy as well as taking a good amount of physical energy between emails, phone calls, observations, etc.

I have been on the other side before. I have attended IEP meetings as a teacher. Now, I am having to go through this process as a parent. I must admit that it is difficult. My child, whom I have protected for the past three years, is now going to be exposed to life outside of my protective shadow. It is scary for me. I know it is not scary for him, but I just don't want anything negative to happen to him. Many people have opinions of Luke that are totally wrong. They look at him and think that he has no cognition (thought, ability to think and reason). They don't see what I see. They also don't expect of him what I expect of him. So, it scares me.

Going through this process also forces me to forgive some people who have hurt me deeply in my professional experience. Will they treat Luke as they had treated me? I pray not, but I am unsure. My plan is to advocate for Luke, while also keeping in mind what the school system is capable of. I will not be the type of parent that every teacher dreads, but I will be the kind of parent that keeps people accountable for their actions.

This is just kind of difficult... and the difficulties are starting to effect me in weird ways.

Yet Another Hospital Visit

We had the opportunity to visit the hospital with Luke for three days again this year. Every year, since his birth, we have made a trip to the hospital. Once for apnea issues, once for testing, and the third time for lethargy (not at all normal for Luke).

On Saturday January 23rd, we went to the local ER. He was really lethargic, he wasn't eating.... he was just acting like a blob. The docs had no idea, so some testing was done. First, blood work (for RSV), a urine sample, and starting fluids. Next a chest x-ray. Then, a cat-scan. Last, and biggest of all, a spinal tap (checking for meningitis). I freaked out at this point. All tests were negative, so we were sent to Sacred Heart so Luke could be "observed". We stayed for three days and were sent home with only one answer. His adnoids are too large so they will be referring him to an ENT. We actually have more questions now than we did before going to the hospital. It was so emotionally draining.

Yay Luke! You're Standing!

On Monday, January 18th, 2009 Luke decided to pull up on the couch and stand up all by himself. His sippy cup was on the couch and he couldn't reach it when he got on his knees, so he used his upper body and got to his feet to get it.

I walked into the room and there he was, on his feet! I cried and shouted for joy and praised God. This one thing, this miracle, gave me hope. It brought me so much joy!

Thank you Lord for my unexpected day-off miracle!!!!!

New Blogs

I have two new blogs. Please go visit. The first one is our family stories blog at http://eagleeyedaniel6.blogspot.com. The second is a blog I started to post information I research- http://informationcrusade.blogspot.com. I am currently researching diet related issues. Enjoy!

Ponderings...

Yes, I know, weird title... but it fit :)

Pondering #1: I wonder if my husband is angry with me for having a baby with a disability. Does he blame me? Is he angry with me? Is that why he seems to not like me most of the time? I feel like what happened to Luke was my fault. Were the showers I took when I was pregnant too hot? Did it cause him to have seizures in womb? Is that why they say he has a brain injury? Did I not eat enough? Did the virus I had when pregnant with him cause his disability? I know, worrying about this stuff is stupid, but It is what I think about.

Pondering #2: Luke is God's gift to me. All of my children are the most special kind of gift I could ever receive.

Pondering #3: I wonder if my dog is ok out in the yard, by herself, when it is 20 degrees outside... we left the dog during our North Carolina/Georgia trip.

Pondering #4: What goes through Luke's head? What is his level of intelligence? What does he feel? Does he have hidden health issues? What if they are serious? Who do I need to call? Who does his pediatrician need to refer Luke to?

Pondering #5: He has a stomach virus and refuses to eat. Will he lose weight? I can't bring him back to the doctor if he has lost weight. What can I give him to gain the weight back?

Pondering #6: How awesome is my God!!! I just want to worship Him!!! Heaven is going to be awesome! Luke will walk and talk and praise God right beside me, my father, my brother, and my two grandfathers.

Pondering #7: Will Marty and I be together in heaven? How does he really feel about me? 7 years seems like a long time to blend a family!

Pondering #8: Am I a good mother? Do my children love me? Does my husband? Am I a good wife?

Pondering #9: What can I do for God today? What can I do in my church? What can I do to bless others? God answered all of these questions today :)

I would be nothing without God. He is my all in all!!!!

The Crusade for Calories

So, the newest struggle we have had to deal with lately is that Luke is not gaining weight and is really not growing like he should. He has been 22 pounds for the past 6 months. His 1 year old cousin weighs about that much. So, we have been trying to figure out how to add more calories to his diet. He is still on the gluten free/dairy free diet. Adding those two food groups would definitely add calories, but at what cost? Would he then be sick all the time? Would being snotty and yuck all the time cause him to stop making progress? So, for now, I am making every meal count- packing as many calories as possible in one bowl.

We still puree. He eats better when we do that. He doesn't choke and get frustrated. It is really hard to vary foods when you have to puree everything. I am concerned that his doctor is going to think we are starving him. So many of these little issues that come with having a child with a disability almost look like parenting problems instead of what they really are. It is trying to meet needs that are completely different than that of a typically developing toddler.

I guess I am realizing that my life with my child with a disability is totally different. It will always be completely different. We will see more doctors and therapists than other people will see in their lifetimes. We will have to go through therapies and Individual Education Plans (IEP's) and BIP's (Behavior Intervention Plans). We will have to constantly try to solve the mysteries that lie within our son.

I would not trade it for the world!!!!