Ryan Conner Muir
I have created this blog to tell the story of a very special little boy.
I used the pronoun "I" throughout my story, but really, it
should be I/WE/US. My husband and Ryan's Grandparents
were my partners and support in my search.
Ryan is my heart and soul.
He is my sunshine on a cloudy day.
He is happy and smart and amazing.
Ryan is also autistic.
Like so many parents, I have felt alone. When a child is diagnosed with a serious illness, the doctor sends the child to the best team of doctors to help cure the child. When a child breaks a bone, or needs stitches, the doctor quickly fixes them and sends them home. When a child is diagnosed with autism, typically, you are handed a packet of information and told "good luck".
I have felt alone and scared. I have felt helpless and insecure. I have questioned every decision I have made as a mother. I have also blamed myself thinking it was something that I did while I was pregnant with him. I have been reasured that I didn't do anything to cause my little one's autism, but I can't help but to be angry with myself.
My husband and I welcomed our first baby in September 2001. After a very long and difficult pregancy and delivery, we were blessed with a beautiful baby girl that we named Lindsey Joelle. She was advanced in all that she did. Not only did she pick up everything so quickly, she retained it. I believe that every child is given a special gift from God, and her memory was incredible from early on. Lindsey had a very normal life. She was pampered and spoiled and given the World. As we celebrated her second birthday, I got "the baby bug". I felt it was time to add to our family.
I found out in October of 2003 that I was expecting. I was overjoyed! I knew in my heart from the beginning that it was going to be boy. My pregancy was easy and I felt great the entire 9 months- I even worked up until the Thursday before he was born. Ryan would be delivered by way of a scheduled c-section due to the fact his older sister became an emergency c-section. I arrived at the hospital on his selected birthday, June 21, 2004. Once I registered, I was prepped, and then wheeled to the operating room and about 20 mintues later, I heard a stong and healty cry come from my newborn. He was named Ryan Conner. We spent four days in the hospital and then were discharged so Ryan could begin his new life with mommy, daddy and his big sister.
This is Ryan's story...
From the very beginning, Ryan had issues. I bottle fed him and noticed that it took forever for him to eat. It would take him almost 2 hours to drink one ounce of formula. The poor little thing was always hungry and all I got done doing almost 24 hours a day, was putting a bottle in his mouth. I brought this to the attention of his pediatrician, and was told for much of three months not to worry about it. I knew something was wrong, yet the doctors were not concerned? During this time, Ryan would only turn his head one direction. We were sent to a physical therapist because he had developed Tortichollis. After 6 weeks of therapy, he was able to turn his head both directions. It seemed at this point we were at the pediatrician once a week for my concerns regarding things I was noticing about Ryan, and because the poor baby was sick all the time with colds, feavers and ear infections.
He continued to eat very slowly and I started to notice that he would take breaths while eating. He would end up so out of breath from eating that he was exhausted afterwards. Finally, after my persistance, the pediatrician sent him to an ENT specialist. We saw Dr. Casselbrant and she suggested that she do a bronchioscope to see what the issue might be. At 16 weeks old, Ryan went in for the procedure. After 30 minutes, her diagnosis was clear. Ryan was refluxing and he had Lyringiomylacia. That very long word simply means that the cartidge in Ryan's throat was soft and floppy and because Ryan was refluxing, it was not strengthening. Her suggestion was to see the gastroenterorologist. Later that same day, the gastro doctors came in and made the recommendation to thicken Ryan's formula to the consistancy of yogurt. I hadn't slept much since he was born. I kept him close by me at all times and woke up frequently to make sure he was still breathing.
Over the next few months, we followed their recommendation. Ryan began to eat and improve. We still were regulars at the pediatrician's office for weekly illnesses and the way our lives were became normal to us. With everything that had been going on and all of the issues that were occuring, I had suspisions that something underlying was going on with Ryan, but the pediatricians kept treating me like I was crazy and since they were the professionals, I tried to calm my fears and listen to them. I actually thought I had "Munchosims Syndrome" where mothers actually make up illnesses to seek attention. It was a very low time in my life.
Ryan had tubes put into his ears when he was 10 months old. His ear infections slowed down and I began to get some sleep at night time. I began to think that Ryan was the way he was and I needed to accept that this was his "normal". I constantly compared Ryan to his sister, which was a big mistake because of how advanced she was. Friends, family and doctors assured me that he was a boy and that is why he was further behind.
As soon as he could move, he began holding his toys. I don't mean that in a good way, like "Wow, he can hold his own toys!" I mean he would hold his toys and would not put them down. He would hold 3, 4, 5 things a time. I called them his "treasures". He would play, eat, bath and sleep by holding his treasures. If, and I mean that was a big IF, he put them down, he would immediately go back them. If he fell asleep holding them, he would wake up looking for them first thing. And there was no tricking him. He remembered exactly what treasure he was holding dear. It was really hard to take him and all his treasures places, but that is exactly what we had to do.
Like so many parents, I have felt alone. When a child is diagnosed with a serious illness, the doctor sends the child to the best team of doctors to help cure the child. When a child breaks a bone, or needs stitches, the doctor quickly fixes them and sends them home. When a child is diagnosed with autism, typically, you are handed a packet of information and told "good luck".
I have felt alone and scared. I have felt helpless and insecure. I have questioned every decision I have made as a mother. I have also blamed myself thinking it was something that I did while I was pregnant with him. I have been reasured that I didn't do anything to cause my little one's autism, but I can't help but to be angry with myself.
My husband and I welcomed our first baby in September 2001. After a very long and difficult pregancy and delivery, we were blessed with a beautiful baby girl that we named Lindsey Joelle. She was advanced in all that she did. Not only did she pick up everything so quickly, she retained it. I believe that every child is given a special gift from God, and her memory was incredible from early on. Lindsey had a very normal life. She was pampered and spoiled and given the World. As we celebrated her second birthday, I got "the baby bug". I felt it was time to add to our family.
I found out in October of 2003 that I was expecting. I was overjoyed! I knew in my heart from the beginning that it was going to be boy. My pregancy was easy and I felt great the entire 9 months- I even worked up until the Thursday before he was born. Ryan would be delivered by way of a scheduled c-section due to the fact his older sister became an emergency c-section. I arrived at the hospital on his selected birthday, June 21, 2004. Once I registered, I was prepped, and then wheeled to the operating room and about 20 mintues later, I heard a stong and healty cry come from my newborn. He was named Ryan Conner. We spent four days in the hospital and then were discharged so Ryan could begin his new life with mommy, daddy and his big sister.
This is Ryan's story...
From the very beginning, Ryan had issues. I bottle fed him and noticed that it took forever for him to eat. It would take him almost 2 hours to drink one ounce of formula. The poor little thing was always hungry and all I got done doing almost 24 hours a day, was putting a bottle in his mouth. I brought this to the attention of his pediatrician, and was told for much of three months not to worry about it. I knew something was wrong, yet the doctors were not concerned? During this time, Ryan would only turn his head one direction. We were sent to a physical therapist because he had developed Tortichollis. After 6 weeks of therapy, he was able to turn his head both directions. It seemed at this point we were at the pediatrician once a week for my concerns regarding things I was noticing about Ryan, and because the poor baby was sick all the time with colds, feavers and ear infections.
He continued to eat very slowly and I started to notice that he would take breaths while eating. He would end up so out of breath from eating that he was exhausted afterwards. Finally, after my persistance, the pediatrician sent him to an ENT specialist. We saw Dr. Casselbrant and she suggested that she do a bronchioscope to see what the issue might be. At 16 weeks old, Ryan went in for the procedure. After 30 minutes, her diagnosis was clear. Ryan was refluxing and he had Lyringiomylacia. That very long word simply means that the cartidge in Ryan's throat was soft and floppy and because Ryan was refluxing, it was not strengthening. Her suggestion was to see the gastroenterorologist. Later that same day, the gastro doctors came in and made the recommendation to thicken Ryan's formula to the consistancy of yogurt. I hadn't slept much since he was born. I kept him close by me at all times and woke up frequently to make sure he was still breathing.
Over the next few months, we followed their recommendation. Ryan began to eat and improve. We still were regulars at the pediatrician's office for weekly illnesses and the way our lives were became normal to us. With everything that had been going on and all of the issues that were occuring, I had suspisions that something underlying was going on with Ryan, but the pediatricians kept treating me like I was crazy and since they were the professionals, I tried to calm my fears and listen to them. I actually thought I had "Munchosims Syndrome" where mothers actually make up illnesses to seek attention. It was a very low time in my life.
Ryan had tubes put into his ears when he was 10 months old. His ear infections slowed down and I began to get some sleep at night time. I began to think that Ryan was the way he was and I needed to accept that this was his "normal". I constantly compared Ryan to his sister, which was a big mistake because of how advanced she was. Friends, family and doctors assured me that he was a boy and that is why he was further behind.
As soon as he could move, he began holding his toys. I don't mean that in a good way, like "Wow, he can hold his own toys!" I mean he would hold his toys and would not put them down. He would hold 3, 4, 5 things a time. I called them his "treasures". He would play, eat, bath and sleep by holding his treasures. If, and I mean that was a big IF, he put them down, he would immediately go back them. If he fell asleep holding them, he would wake up looking for them first thing. And there was no tricking him. He remembered exactly what treasure he was holding dear. It was really hard to take him and all his treasures places, but that is exactly what we had to do.
Ryan began this obsessive drooling. It was not uncommon to go through several shirt changes every day. He would get these awful rashes around his mouth. I took him to the dermatologist, and they really couldn't do anything for him. Both the dermatologist and the pediatrician were sure it was that he was teething. Their answer was "Once he stops drooling it should clear up." So everyday I would lube his face up with vasoline. I began scratching my head after he was done teething and the drooling wasn't getting any better?
I went with the flow for the next handful of months, but when Ryan turned 15 months old, and the illnesses and drooling continued and at this point his only communications was gibberish, and the drooling continued. I became worried more than ever. I asked the pediatrician what she thought and she suggested waiting until he was 18 months old and if he was not saying any words at that point, then we needed to seek an evaluation for Early Intervention Services for Speech Therapy.
Ryan turned 18 months and not a "momma" or "dadda" came from his little mouth. We went for an evaluation and were granted services. We were paired with a wonderful Speech Therapist. She was a Godsend. She worked for 18 months with Ryan and determined he had a oral motor delay which contributed to the excessive drooling and lack of speech. She worked miracles. By the time he was 3, he was talking in sentences and the drooling pretty much stopped. She was not able to see him after his third birthday, which was a very sad day for us. As Ryan became more active, it was noticable that he walked in-toed, and bow legged. He tripped over his own two feet constantly. We saw an Orthopedic specialist and had numerous x-ray's done, yet no one had an answer and just said that he would eventually grow out of it. He would not leave his socks and shoes on and would cry. He would often say "my feet hurt". I had no clue, but when he did not have socks and shoes on, he seemed to be calm.
At 3, children needing therapy get directed to the Intermediate Unit. Ryan was tested and was eligable for Physical Therapy, Occupational Therapy and Developmental Therapy. The IU does all of the services in the school setting which worked out well because Ryan was enrolled in a preschool/daycare program. It was now obvious that Ryan was behind other children his age. There was no doubt he was intelligent, but getting him to stay on task was difficult. My fear became if he could not absorb the basic skills at preschool, how would he know enough to start kindergarten and be on target as all of the other children? I had done all of the reading that said that children are sponges and absorb a termendous amount by their sixth birthday. It was a fear of mine and I wanted more than anything for my little one to be "normal" enough to be like all of the other kids by the time he went to school.
I had this feeling in the pit of my stomach that something more was wrong. I was talking to anyone that would listen and getting appointments with any doctor who might have an answer. Everyone kept telling me the same thing, Ryan was a boy and that naturally makes him further behind. They would all tell me to quit worrying. The doctor blew me off now, I think she tought I was crazy. I was at the most frustrating point of my life. I had been searching and searching and felt like I was never going to find any answers. I knew my little boy was special, but he was in no means like the other little boys his age. He didn't play with them, he played beside them. He didn't play with his toys, he arranged them. He would ask for 4 cheese curls- and he meant 4, too many, or not enough he would run and hide. He didn't use imagination to play, he repeated what he saw. If I asked him a question, he would stare blankly out into the world, until I asked him again and again. After asking him a question for the third time, he would look at me and answer "oh, I want a red one". It's like it took him 3 times as long to process information. He didn't just like colors and numbers, he got fixated on them. He wanted to eat the same 5 things each and every day and would not try anything different. He would go to bed hungry if I didn't offer him the food he would eat. I thought for sure he was going to turn into a chicken nugget. But I guess he was just a boy, right?
Memorial Day weekend 2007, Ryan became extremely ill. He had a high fever for days and was now listless and dehydrated. I took him to the doctor and they blamed it on a virus. He got worse as each hour came and went. I took him to the emergency room where they gave him antibiotics and fluids, took blood and sent us on our way. As we got home, he got worse not better. I got a call on Memorial day that I needed to bring Ryan back to the Emergency Room. His blood work had come back and he was more serious than they had originally thought. I rushed him in to find that he had a blood infection. Apparently bacteria had collected behind his tonsils causing his illness. This was not uncommon and is most likely the cause of many of the doctor visits we had each and every week. But this time, that infection went into his blood and that was serious. They treated him with high doses of antibiotics and admitted him. He spent a few days in the hospital and then they released him to come home with strong antibiotics.
He improved and I made an appointment to see the ENT. She agreed that his enlarged tonsils should come out. She scheduled him for surgery the following week. After the surgery, we encountered three very rough weeks of recovery. It was awful, but at the end of the three weeks, Ryan became a child we had never seen. He felt great. He was ornry and funny. He was full of energy. Prior to the surgery, he would just lay and cuddle. He did not want to participate or do anything. He acted as if he was always sick, which he was. This surgery was the answer to a prayer. Anyone could see how great he felt. And as each day came, and he woke up feeling good, something became more evident. Ryan was really "different".
I decided to switch pediatricians not long after the blood infection episode. I selected a pediatrician that my boss at that time respected and took his own children to. At my first meeting with her, she examined him and suggested I go to a place call the Children's Diagnostic Unit at Children's Hospital of Pittsburgh. They are a team of doctors that work together to help you find answers. I went there and met a wonderful doctor who spent two hours with us. She suggested that I keep a diary of Ryan and see her in 4-6 months. I took her advice, and faxed the diary pages to her.
In the meantime, it was time for Ryan's 4 year old well check. We went to see our new pediatrician. She examined Ryan and was shocked when she found he was not potty trained, and was not even close. She got very upset with me and started telling me what I needed to do. I stopped her and asked her to just watch Ryan. Watch him and talk to him. She did. She spent a half hour watching him and asking him questions. She looked at me and I heard the words I had longed to hear for so long, "Julie, I see what you see." She then referred me to the Child Development Unit at Children's Hospital.
A few weeks passed until we could get in to the CDU. I kept our doctor at the Diagnostic Unit updated, but she agreed with the path our pediatrician was taking. We met with the Psycologist in July 2008. She was very nice. She spent time observing Ryan and then playing with him. She went on to talk to him and ask him questions. She then pulled out some "tests" and when she had finished that, she asked me and Ryan to wait while she left the room. She came back with a folder and sat down across from me. She explained to me each step that she had just done. She told me why she did it and what it meant. She then calmly told me that Ryan had a diagnosis of Autism. My jaw dropped, and my heart sank. She explained that he had a high number of Autistic characteristics and that his diagnosis was a classic case of a child who falls under the Autism Spectrum Disorder. She asked me if I had any questions, and to be honest, I was at a loss for words. A big part of me was so greatful that there was finally a name for all of the behaviors Ryan had exibihted, the larger part of me was filled with more saddness than I had ever experienced. I was almost hoping that the Psycologist would tell me I was crazy and that our Pediatrician was right to blow me off. Wow...it was a lot to handle.
I left that day, with Ryan and the folder and headed home. I wasn't sure what to do next. I started reading and finding people to talk to. You see, every child who has autism is different. No two are alike. No one know what causes it and no one knows how to cure it. God knows, I am a good mom and this did not happen because of my lack of trying. I heard recently that all of the autistic children in the world are angels and they were put here on Earth to show us life differently. That is so true. If you don't know an autistic child, you can't know or understand the beauty of the simple things. You can't truely appreciate colors, numbers and shapes. You can't be as frustrated or as forgiving on a daily basis. And you can't know how special these little people really are. It is a blessing to see the World through the eyes and heart of an autistic child. You know a true innocent love when that child hugs you and says I love you because in so many cases it is rare to experience. I have been given this gift. He makes me appreciate life and to be as patient as I humanly can. He is special and there is just something about him...
This is Ryan's Story.
I went with the flow for the next handful of months, but when Ryan turned 15 months old, and the illnesses and drooling continued and at this point his only communications was gibberish, and the drooling continued. I became worried more than ever. I asked the pediatrician what she thought and she suggested waiting until he was 18 months old and if he was not saying any words at that point, then we needed to seek an evaluation for Early Intervention Services for Speech Therapy.
Ryan turned 18 months and not a "momma" or "dadda" came from his little mouth. We went for an evaluation and were granted services. We were paired with a wonderful Speech Therapist. She was a Godsend. She worked for 18 months with Ryan and determined he had a oral motor delay which contributed to the excessive drooling and lack of speech. She worked miracles. By the time he was 3, he was talking in sentences and the drooling pretty much stopped. She was not able to see him after his third birthday, which was a very sad day for us. As Ryan became more active, it was noticable that he walked in-toed, and bow legged. He tripped over his own two feet constantly. We saw an Orthopedic specialist and had numerous x-ray's done, yet no one had an answer and just said that he would eventually grow out of it. He would not leave his socks and shoes on and would cry. He would often say "my feet hurt". I had no clue, but when he did not have socks and shoes on, he seemed to be calm.
At 3, children needing therapy get directed to the Intermediate Unit. Ryan was tested and was eligable for Physical Therapy, Occupational Therapy and Developmental Therapy. The IU does all of the services in the school setting which worked out well because Ryan was enrolled in a preschool/daycare program. It was now obvious that Ryan was behind other children his age. There was no doubt he was intelligent, but getting him to stay on task was difficult. My fear became if he could not absorb the basic skills at preschool, how would he know enough to start kindergarten and be on target as all of the other children? I had done all of the reading that said that children are sponges and absorb a termendous amount by their sixth birthday. It was a fear of mine and I wanted more than anything for my little one to be "normal" enough to be like all of the other kids by the time he went to school.
I had this feeling in the pit of my stomach that something more was wrong. I was talking to anyone that would listen and getting appointments with any doctor who might have an answer. Everyone kept telling me the same thing, Ryan was a boy and that naturally makes him further behind. They would all tell me to quit worrying. The doctor blew me off now, I think she tought I was crazy. I was at the most frustrating point of my life. I had been searching and searching and felt like I was never going to find any answers. I knew my little boy was special, but he was in no means like the other little boys his age. He didn't play with them, he played beside them. He didn't play with his toys, he arranged them. He would ask for 4 cheese curls- and he meant 4, too many, or not enough he would run and hide. He didn't use imagination to play, he repeated what he saw. If I asked him a question, he would stare blankly out into the world, until I asked him again and again. After asking him a question for the third time, he would look at me and answer "oh, I want a red one". It's like it took him 3 times as long to process information. He didn't just like colors and numbers, he got fixated on them. He wanted to eat the same 5 things each and every day and would not try anything different. He would go to bed hungry if I didn't offer him the food he would eat. I thought for sure he was going to turn into a chicken nugget. But I guess he was just a boy, right?
Memorial Day weekend 2007, Ryan became extremely ill. He had a high fever for days and was now listless and dehydrated. I took him to the doctor and they blamed it on a virus. He got worse as each hour came and went. I took him to the emergency room where they gave him antibiotics and fluids, took blood and sent us on our way. As we got home, he got worse not better. I got a call on Memorial day that I needed to bring Ryan back to the Emergency Room. His blood work had come back and he was more serious than they had originally thought. I rushed him in to find that he had a blood infection. Apparently bacteria had collected behind his tonsils causing his illness. This was not uncommon and is most likely the cause of many of the doctor visits we had each and every week. But this time, that infection went into his blood and that was serious. They treated him with high doses of antibiotics and admitted him. He spent a few days in the hospital and then they released him to come home with strong antibiotics.
He improved and I made an appointment to see the ENT. She agreed that his enlarged tonsils should come out. She scheduled him for surgery the following week. After the surgery, we encountered three very rough weeks of recovery. It was awful, but at the end of the three weeks, Ryan became a child we had never seen. He felt great. He was ornry and funny. He was full of energy. Prior to the surgery, he would just lay and cuddle. He did not want to participate or do anything. He acted as if he was always sick, which he was. This surgery was the answer to a prayer. Anyone could see how great he felt. And as each day came, and he woke up feeling good, something became more evident. Ryan was really "different".
I decided to switch pediatricians not long after the blood infection episode. I selected a pediatrician that my boss at that time respected and took his own children to. At my first meeting with her, she examined him and suggested I go to a place call the Children's Diagnostic Unit at Children's Hospital of Pittsburgh. They are a team of doctors that work together to help you find answers. I went there and met a wonderful doctor who spent two hours with us. She suggested that I keep a diary of Ryan and see her in 4-6 months. I took her advice, and faxed the diary pages to her.
In the meantime, it was time for Ryan's 4 year old well check. We went to see our new pediatrician. She examined Ryan and was shocked when she found he was not potty trained, and was not even close. She got very upset with me and started telling me what I needed to do. I stopped her and asked her to just watch Ryan. Watch him and talk to him. She did. She spent a half hour watching him and asking him questions. She looked at me and I heard the words I had longed to hear for so long, "Julie, I see what you see." She then referred me to the Child Development Unit at Children's Hospital.
A few weeks passed until we could get in to the CDU. I kept our doctor at the Diagnostic Unit updated, but she agreed with the path our pediatrician was taking. We met with the Psycologist in July 2008. She was very nice. She spent time observing Ryan and then playing with him. She went on to talk to him and ask him questions. She then pulled out some "tests" and when she had finished that, she asked me and Ryan to wait while she left the room. She came back with a folder and sat down across from me. She explained to me each step that she had just done. She told me why she did it and what it meant. She then calmly told me that Ryan had a diagnosis of Autism. My jaw dropped, and my heart sank. She explained that he had a high number of Autistic characteristics and that his diagnosis was a classic case of a child who falls under the Autism Spectrum Disorder. She asked me if I had any questions, and to be honest, I was at a loss for words. A big part of me was so greatful that there was finally a name for all of the behaviors Ryan had exibihted, the larger part of me was filled with more saddness than I had ever experienced. I was almost hoping that the Psycologist would tell me I was crazy and that our Pediatrician was right to blow me off. Wow...it was a lot to handle.
I left that day, with Ryan and the folder and headed home. I wasn't sure what to do next. I started reading and finding people to talk to. You see, every child who has autism is different. No two are alike. No one know what causes it and no one knows how to cure it. God knows, I am a good mom and this did not happen because of my lack of trying. I heard recently that all of the autistic children in the world are angels and they were put here on Earth to show us life differently. That is so true. If you don't know an autistic child, you can't know or understand the beauty of the simple things. You can't truely appreciate colors, numbers and shapes. You can't be as frustrated or as forgiving on a daily basis. And you can't know how special these little people really are. It is a blessing to see the World through the eyes and heart of an autistic child. You know a true innocent love when that child hugs you and says I love you because in so many cases it is rare to experience. I have been given this gift. He makes me appreciate life and to be as patient as I humanly can. He is special and there is just something about him...
This is Ryan's Story.
If sharing Ryan's story helps one parent, then I am so glad I took the time to write it. Always follow your instincts as a parent. Don't take "NO" for an answer. You know your child better than anyone else. Question your doctor and follow your gut feeling. Thank you for taking time to read our journey.
Please excuse any misspelled words. God knows I am not a spelling expert.
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