Friday, January 30, 2009
Our Pediatrician
I have been asked by several people what Pediatrician we see. I am proud to say that we go to Children's Community Pediatric, Jeannette. We typically see Dr. Rena Ziadeh, but all of the doctors at the practice have been wonderful. Their phone number is 724-523-6571. Dr. Ziadeh is the doctor that took the time to watch Ryan and gave me the gift of words I had been longing to hear, "I see what you see." You have to choose a doctor that is right for you and your child, but I can tell you that I really like, respect and trust Dr. Ziadeh.
School Days...
Most kids don't like school. I think that I understand the daily hesitation of getting up, going to school not knowing what the day will hold, after all, I really didn't enjoy going to school much before junior high. Getting Ryan ready for school is usually a whole different ball game. I wake him, get him ready, and off to school he goes, but not before he cries and begs me not to send him. It is a gut wrenching feeling to be away from him and to send him someplace he doesn't want to be. The truth is, Ryan just feels better being at home. He would rather stay home and not go anywhere. He is like a little catapillar that likes his cocoon. I am sure, and I am hoping, that one day, he will grow wings and fly and enjoy being out in the world. I just hope he doesn't fly too far, too fast.
Exhaustion...
Autism is exhausting! I have never been so tired in my life. I got the chance to spend a snow day with both Ryan and his sister yesterday. Spending a day with Ryan is a gift, but he leaves me so tired. He asks for the same things over, and over, and over, and over again. For example, he doesn't understand that we don't have any more Pop Tarts, and so I usually end up losing the argument and head to the grocery store to pick up more of what he is asking for just to have a minute of peace. It is a full day, full of answering all of his questions. Usually he asks the same questions and I answer the same answers multiple times before he goes on to something else and then he comes back to the same round of questions. Sometimes it is funny, and I can answer him creatively, while other times, it is just plain tiresome. I feel like I am reliving that movie with Bill Murray "Groundhog Day" with so many of the conversations I have with Ryan. I keep thinking, maybe the way Ryan learns and retains things, is to keep asking. But I know that he usually has to ask mulitple times before he can process my answers and let it sink in. All in a days work.
Friday, January 23, 2009
Silly little things...
Ryan is always saying creative things...a few weeks ago, my husband was asking him what
different foods come from which fruits and veggies. He asked him where french fries came from, and many other common foods. My husband asked where watermelons come from, and Ryan plainly answered "from waterfalls." I always get a chuckle from the way he views the world. This morning, Ryan asked his Dad what Black and White make? The obvious answer, the answer my husband used was "gray". Ryan answered, "No silly, a penguin".
Ryan has always been like a little chipmunk. He carries all of his toys in his arms, and then stores them in places like his bed. The other night, Ryan wanted to sleep with me, as he often does. I tucked him in bed and went to watch a television program. I saw Ryan running back and forth from his bedroom to mine. I didn't think much of it, because after a few minutes he was back in bed. About an hour later, I was ready to go to bed. I pulled back the covers to find Ryan had put many of his favorite toys in bed with him! There was no room for me! I could not stop laughing. I put the toys back in his room and off to bed I went. Yes, that's my silly boy!
different foods come from which fruits and veggies. He asked him where french fries came from, and many other common foods. My husband asked where watermelons come from, and Ryan plainly answered "from waterfalls." I always get a chuckle from the way he views the world. This morning, Ryan asked his Dad what Black and White make? The obvious answer, the answer my husband used was "gray". Ryan answered, "No silly, a penguin".
Ryan has always been like a little chipmunk. He carries all of his toys in his arms, and then stores them in places like his bed. The other night, Ryan wanted to sleep with me, as he often does. I tucked him in bed and went to watch a television program. I saw Ryan running back and forth from his bedroom to mine. I didn't think much of it, because after a few minutes he was back in bed. About an hour later, I was ready to go to bed. I pulled back the covers to find Ryan had put many of his favorite toys in bed with him! There was no room for me! I could not stop laughing. I put the toys back in his room and off to bed I went. Yes, that's my silly boy!
Wednesday, January 21, 2009
What a termendous world we live in!
What a termendous world we live in! I just had the most wonderful conversation with a woman that I have been buying beads from for my Pandora charm bracelet. I emailed her because I needed to get information on one of the beads I purchased from her, and she actually took the time to call me. Upon talking to her, I asked her about he Autism bead she carries, and that led to a long conversation about Autism. People are so interested in Autism, and once you begin talking about it, most everyone has a story to tell about at least one other child who is Autistic.
I wanted to pass along the site that I buy my charms from. It is a wonderful site to buy the beads and bracelets, and you can get just about any bead for any interest you may have. They are sterling silver and great for yourself, or for gifts. This site is important because it is the only site I have been able to find an Autism bead, plus the owner gives A+ service and she is incredibly nice. Hope you enjoy!
http://www.silverbeadbox.com/
I wanted to pass along the site that I buy my charms from. It is a wonderful site to buy the beads and bracelets, and you can get just about any bead for any interest you may have. They are sterling silver and great for yourself, or for gifts. This site is important because it is the only site I have been able to find an Autism bead, plus the owner gives A+ service and she is incredibly nice. Hope you enjoy!
http://www.silverbeadbox.com/
Tuesday, January 20, 2009
The Crazy Look...
Did you ever get the feeling that someone was looking at you like you were totally crazy? Well, I have had that feeling many, many times over the last 4 1/2 years. I experienced it yet again yesterday. I took Ryan to the pediatrician. The doctor wanted to touch base on his development, and he was due for vaccinations.
Previously, I was not cautious about vaccinations and I have always believed that vaccinating your children was the best thing to do. But I feel differently now since his diagnosis. I don't think that Ryan's vaccanations caused his autism, but as I have discussed previously, I do think that it is possible that his vaccanations may have made his autistic characteristics stronger. So I asked the doctor if we could space out the five shots that he was due to have, and not do them all at once. She didn't see an issue with my request.
When the nurse came in, she appeared puzzled and asked why I was only doing two shots. I explained myself. She looked at me as if I had said that I starved my child. Yes, she thought I was crazy. I am used to that look by now. I get it all the time. I get it from people who can't believe there is anything "wrong"with Ryan, and I get it from people who don't understand or "know" autism. Autism is a lesson in being sympothetic, kind and patient. When you "know" autism, you don't question or give other parents the "crazy" look, you just look at the parent as an equal. You know and understand many of their struggles. Their struggles may be less than yours, or more than yours, but you have compassion and you understand.
Recently, I seem to be surrounding myself with both knowledge and other parents who understand. I don't resent those that don't have an autistic child, because I too have a child (Lindsey) that is not autistic, but I do find comfort in people who make me feel like I am not alone and that my struggles are normal. It makes life seem a little more "normal" and calm when you see or talk to a parent who knows what you are going through.
I took both of my children to a local play place yesterday, where there are big tubes to climb through, and slides and ball pits. Both of my kids love the freedom of running and yelling, and I love that they are exhausted by the time we leave..."YEAH BEDTIME!" While I was keeping a close eye on Ryan, I noticed a mother chasing after her 5 year old. She was pregnant, and pretty far along. She looked exhausted. I asked her if I could get her something to drink. She smiled, and politely said, "No thank you, I am fine." We started to talk, and chase our boys. I came to find out that her son is autistic. She has known since he was 2. He is non verbal, yet full of life and energy. We could not chat very long because both of our boys were very active and running in different directions, but it was the nicest five minutes of the day. She understood my exhaustion, my frustration and my joy.
There are all kinds of parents out there who understand the journey of autism. We are not alone, and not crazy. We are human, and we are parents, and I will say it, we are darn good parents!
Previously, I was not cautious about vaccinations and I have always believed that vaccinating your children was the best thing to do. But I feel differently now since his diagnosis. I don't think that Ryan's vaccanations caused his autism, but as I have discussed previously, I do think that it is possible that his vaccanations may have made his autistic characteristics stronger. So I asked the doctor if we could space out the five shots that he was due to have, and not do them all at once. She didn't see an issue with my request.
When the nurse came in, she appeared puzzled and asked why I was only doing two shots. I explained myself. She looked at me as if I had said that I starved my child. Yes, she thought I was crazy. I am used to that look by now. I get it all the time. I get it from people who can't believe there is anything "wrong"with Ryan, and I get it from people who don't understand or "know" autism. Autism is a lesson in being sympothetic, kind and patient. When you "know" autism, you don't question or give other parents the "crazy" look, you just look at the parent as an equal. You know and understand many of their struggles. Their struggles may be less than yours, or more than yours, but you have compassion and you understand.
Recently, I seem to be surrounding myself with both knowledge and other parents who understand. I don't resent those that don't have an autistic child, because I too have a child (Lindsey) that is not autistic, but I do find comfort in people who make me feel like I am not alone and that my struggles are normal. It makes life seem a little more "normal" and calm when you see or talk to a parent who knows what you are going through.
I took both of my children to a local play place yesterday, where there are big tubes to climb through, and slides and ball pits. Both of my kids love the freedom of running and yelling, and I love that they are exhausted by the time we leave..."YEAH BEDTIME!" While I was keeping a close eye on Ryan, I noticed a mother chasing after her 5 year old. She was pregnant, and pretty far along. She looked exhausted. I asked her if I could get her something to drink. She smiled, and politely said, "No thank you, I am fine." We started to talk, and chase our boys. I came to find out that her son is autistic. She has known since he was 2. He is non verbal, yet full of life and energy. We could not chat very long because both of our boys were very active and running in different directions, but it was the nicest five minutes of the day. She understood my exhaustion, my frustration and my joy.
There are all kinds of parents out there who understand the journey of autism. We are not alone, and not crazy. We are human, and we are parents, and I will say it, we are darn good parents!
Thursday, January 15, 2009
My thoughts on cause and cure.
When I get on the subject of Autism with someone and preceed to tell them that my little boy is autistic, I usually get a familiar question..."Was he always like that or did it start after he got his shots?" It makes me stop and think about this very long journey we have been on. My answer is always, "I am not sure". For as long as I can remember, Ryan was always different and there was just something about him. I did get more and more suspicious around the time he was 18 months, but I can not pin point a period where everything changed, or even, if there ever was a change.
My gut feeling is that this is the way Ryan was born and was meant to be. I don't know what to say about vaccinate or do not vaccinate your child? I think you have to do what you feel is right and there are risks and rewards with every decision that you make. I heard recently that it may not be the individual vaccinations that cause the rise in autism, but that children who are autistic tend to have compromised immune systems and when they are given their shots all at once, it overwhelms their little bodies and the autistic characteristics come out full speed ahead. I tend to agree with this suggestion. I don't regret vaccinating Ryan, but given what I know now, I would have asked for one shot at a time. I don't know if it would have helped or changed anything, but it would not have hurt.
We live in a society where reports come out weekly that food has been contaminated, or that kids watch too much TV and play too many video games, or the air we breath is unhealthy. Who really knows if anything causes autism. I think the best thing to do is to block out all of the negativity and do what your gut tells you to do for your children. I do look forward to the day when they find the cause and then hopefully a cure that brings my little one out of his "fog". For now, I will hold my little one tight and thank God for the blessing he has presented to me. My mother always tells me that "God doesn't give us more than we can handle". God has given me this gift to raise, and I vow to do it with love, hope and faith.
Wednesday, January 14, 2009
Amazing support!
When you put your heart and soul on the line, it is amazing what can happen. I wasn't sure if sharing Ryan's story was the best thing to do, but I was hoping that it was. I wanted nothing more than for our struggles and frustrations to help another family. So I put my heart and soul on the line and started to write. If you have read my previous entires, than you know how exhausting, frustrating and difficult the last four and half years have been. Since starting my blog, the support I have received is wonderful! Friends and strangers have lended me their love and advice. I am like anyone else and find strength and peace in knowing that I am not alone. Since writing about our journey, I have had a "light bulb" moment! I believe in treating others as I want to be treated. I don't want to feel alone in my struggles, so now I can put my story out there so someone, somewhere, will know they are not alone! I was put on this Earth for a reason, and that reason just may be to share and bring comfort to others! Wish me luck!
Sunday, January 11, 2009
Since the diagnosis...
Ryan was diagnosed in July, and since then I have been reading any article that I could get my hands on. Google is a wonderful place to find answers to questions and to scare the heck out of you. Having a diagnosis for Ryan has given me a better understanding of how I need to deal with him and his many issues. I have definitely become more patient and accepting.
Through much of my reading, I have found parents who are willing to go to the ends of the earth to find answers and even a cure for their children. I love Jenny McCarthy's book...I actually could not put it down. She was so honest, and although her child exhibited much different symptoms than Ryan, it was so assuring to know that autism is everywhere and affects so many families. I am not alone.
It seems as though there has been some success with diet changes and a lot of success with wrap around therapy. I also came to find about a specific group of doctors called DAN doctors, or Defeat Autism Now. Right away, I called a DAN doctor in Pittsburgh who is supposed to be one of the best. Upon calling his office, I was told that it would be a 9-12 month wait to see him. I scheduled the appointment but was extremely frustrated because that is another 9-12 months of wasted time for Ryan. I searched other states, and found the same thing. There are so many parents seeking help, that it is a waiting game. In the mean time, I did ask the DAN doctor's office what suggestions they might have in the mean time. They do a ton of blood work, so the receptionsist told me that if I wanted to ask my pediatrician for some of the same blood work, it may help give me some early answers.
I talked to our pediatrician, and she suggested seeing a Gastroenterologist regarding suspicions tha Ryan's diet could be causing some of his Autistic characteristics. I made an appointment with Children's Hospital and saw a Gastro doctor. He felt that Ryan's diet was not affecting him, but was willing to run a full scale of blood work to see if he could find anything. After two weeks, the Gastro office called me and the only thing the blood work showed was that Ryan was low in B12. He suggested I still keep the appointment with the DAN doctor, but to the best of his knowledge, if diet was causing elevated Autistic characteristics, than it would have showed up in the blood work.
I also got paired up with an agency via a good friend (Thanks Tanya!). Family Behavioral Resoureces, or FBR, supplies Ryan's support system. He was given a fabulous BSC, which is a "head therapist" that over see's Ryan's TSS, which is the therapist who see's him at school and home. He receives 10 hours of therapy at preschool and 5 hours of therapy at home. Unfortunantly, we have not had much luck with TSS's. We are on or third TSS and I am not sure that this one is right either. We are not a hard family to work with, and Ryan is high functioning so we have been told he is the kind of child that is a joy to work with, but still no luck finding the right TSS.
For now, we are waiting patiently to see the DAN doctor and holding out that our current TSS will work out, we have our fingers crossed. It's funny because I thought once Ryan had his diagnosis that things would fall right into place for him and help would be readily available, but I have found quite the opposite. Finding help, answers and support is like going through an over stuffed laundry basket looking for two matching socks, you will find it, but it takes forever and you have to look through every piece of clothing to see if you sock is hidden inside of it. And even after you have gone through the entire laundry basket, you may have to look back in the dryer to see if it is still in there.
I am exhausted. I work full time, which I have to do. When I get home for work it is a race to get through dinner, spend a few precious hours with both kids and get them to bed. Many times, there is a therapist at my house to greet me upon my arrival home from work and I have to share my evenings with them. My husband works third shift, so there is not much "us" time. Doing what is best for your child often puts a strain on your marraige like you could never imagine. It takes ten times the normal effort to hold your marraige together. It is important that the "glue that binds you" is strong in the beginning. Thank God for me that my husband really tries and cares so much about doing what is best for Ryan, and he hangs in there and tries to be the best Dad and husband he can be. It is a daily sacrifice and it usually is never easy.
I am not under the misconception that that I am going to be able to CURE Ryan. I think Ryan was born this way and there is no cause for his autistic characteristics since birth. I do know that many times he is in "a fog" and in "his own world" so I just want to help him in any way that I can. My goal is to work hard now so that when he goes to Kindergarten in a year and a half, he can go to public school and be main streamed. I want him to be, and feel, as "normal" as possible. I am also prepared that he may have to attend a special school and that may be the best thing for him. I will cross that bridge when it is time.
I will keep you updated as our journey continues.
Through much of my reading, I have found parents who are willing to go to the ends of the earth to find answers and even a cure for their children. I love Jenny McCarthy's book...I actually could not put it down. She was so honest, and although her child exhibited much different symptoms than Ryan, it was so assuring to know that autism is everywhere and affects so many families. I am not alone.
It seems as though there has been some success with diet changes and a lot of success with wrap around therapy. I also came to find about a specific group of doctors called DAN doctors, or Defeat Autism Now. Right away, I called a DAN doctor in Pittsburgh who is supposed to be one of the best. Upon calling his office, I was told that it would be a 9-12 month wait to see him. I scheduled the appointment but was extremely frustrated because that is another 9-12 months of wasted time for Ryan. I searched other states, and found the same thing. There are so many parents seeking help, that it is a waiting game. In the mean time, I did ask the DAN doctor's office what suggestions they might have in the mean time. They do a ton of blood work, so the receptionsist told me that if I wanted to ask my pediatrician for some of the same blood work, it may help give me some early answers.
I talked to our pediatrician, and she suggested seeing a Gastroenterologist regarding suspicions tha Ryan's diet could be causing some of his Autistic characteristics. I made an appointment with Children's Hospital and saw a Gastro doctor. He felt that Ryan's diet was not affecting him, but was willing to run a full scale of blood work to see if he could find anything. After two weeks, the Gastro office called me and the only thing the blood work showed was that Ryan was low in B12. He suggested I still keep the appointment with the DAN doctor, but to the best of his knowledge, if diet was causing elevated Autistic characteristics, than it would have showed up in the blood work.
I also got paired up with an agency via a good friend (Thanks Tanya!). Family Behavioral Resoureces, or FBR, supplies Ryan's support system. He was given a fabulous BSC, which is a "head therapist" that over see's Ryan's TSS, which is the therapist who see's him at school and home. He receives 10 hours of therapy at preschool and 5 hours of therapy at home. Unfortunantly, we have not had much luck with TSS's. We are on or third TSS and I am not sure that this one is right either. We are not a hard family to work with, and Ryan is high functioning so we have been told he is the kind of child that is a joy to work with, but still no luck finding the right TSS.
For now, we are waiting patiently to see the DAN doctor and holding out that our current TSS will work out, we have our fingers crossed. It's funny because I thought once Ryan had his diagnosis that things would fall right into place for him and help would be readily available, but I have found quite the opposite. Finding help, answers and support is like going through an over stuffed laundry basket looking for two matching socks, you will find it, but it takes forever and you have to look through every piece of clothing to see if you sock is hidden inside of it. And even after you have gone through the entire laundry basket, you may have to look back in the dryer to see if it is still in there.
I am exhausted. I work full time, which I have to do. When I get home for work it is a race to get through dinner, spend a few precious hours with both kids and get them to bed. Many times, there is a therapist at my house to greet me upon my arrival home from work and I have to share my evenings with them. My husband works third shift, so there is not much "us" time. Doing what is best for your child often puts a strain on your marraige like you could never imagine. It takes ten times the normal effort to hold your marraige together. It is important that the "glue that binds you" is strong in the beginning. Thank God for me that my husband really tries and cares so much about doing what is best for Ryan, and he hangs in there and tries to be the best Dad and husband he can be. It is a daily sacrifice and it usually is never easy.
I am not under the misconception that that I am going to be able to CURE Ryan. I think Ryan was born this way and there is no cause for his autistic characteristics since birth. I do know that many times he is in "a fog" and in "his own world" so I just want to help him in any way that I can. My goal is to work hard now so that when he goes to Kindergarten in a year and a half, he can go to public school and be main streamed. I want him to be, and feel, as "normal" as possible. I am also prepared that he may have to attend a special school and that may be the best thing for him. I will cross that bridge when it is time.
I will keep you updated as our journey continues.
Saturday, January 10, 2009
Autism Night Before Christmas
Autism Night Before Christmas
by Cindy Waeltermann
by Cindy Waeltermann
I have copied this and added it to my blog
in honor of Ryan.
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right colorAnd style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.
"He needs discipline," they say"
Just a well-needed smack,
You must learn to parent..."
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's likeTo live
with the spectrum
The struggles and triumphs
Achievements, regressions...
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.......
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right colorAnd style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.
"He needs discipline," they say"
Just a well-needed smack,
You must learn to parent..."
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's likeTo live
with the spectrum
The struggles and triumphs
Achievements, regressions...
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.......
Ryan's Story...The Introduction
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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