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March 29, 2016

Autism – A Personal Story

I usually keep my blog a place for my work for my business unlike other photographers that I love and follow.  For a long time, I have been debating whether or not to share my personal life on here.  The biggest debate for me has been whether or not to tell my sons story, our story; to share with my clients and friends our sons journey, our journey.

I have discussed Chase’s story each year on his Walk for Autism page. Then in April 2015, I was interviewed by a friend from New York for a post she needed to write on Autism awareness. I was hesitant to put such personal information out there for the world to read, but I decided to just do it.  There was such a great response from her article, yet I never considered sharing it on my blog.  I am not sure why, but for me sharing it is a huge deal.  It is our life.

This past year, I have been encouraged by so many people and other photographers to share.  Most recently, at our sons last doctor visit, his pediatrician said that our story could bring hope to so many families going through what we went through, going through what we continue to go though. She said that Chase is amazing (I completely agree), but I am his mother so I am a  little biased.  She told us to look at him now and think of him then and to take it in and realize exactly how incredible his progress is.  After leaving there, I gave it more thought. Then, I stumbled upon a blog post that inspired me and start writing.

(images by Misa Me Photography and Abby Grace Photography top right and bottom right)

This is the story or our amazing little boy. Our story, our life.

When I gave birth to Chase, he was 41 weeks.  I was induced early in the morning on the 3rd of September. However, nothing went smoothly.  After hours of being in labor, hours of his heart rate being up and down I had to have an emergency c-section.  Things are still so fuzzy for me.  His heart rate was too high and mine was dropping, I began to get dizzy and things were blurry and everyone was rushing around. I heard one loud cry and then nothing.  He wasn’t breathing and the doctors rushed him away.  Chase was born with a Spontaneous Pneumothorax, which is basically a hole in his lungs that was caused because he was under such distress the doctors said that when he cried it caused his lung to make a hole. He was admitted into NICU at St. Joseph Medical Center and was on oxygen and antibiotics for the duration of his stay there. I was very sick as well due to an infection I caught during labor and could not see him for several days.   I was discharged before him and just couldn’t wait for the day when we could take him home. A few days later, we were handed our little one and told that he was healthy.

For the next couple of weeks, we were overly cautious; limited visitors and only took him out for doctor appointments. When Chase was six weeks old, he developed a rash. We were told it was an allergic reaction to something, and we were sent home. We knew something was not right. We went to the pediatrician several times because it was only getting worse. After three days of having the rash, he was rushed to John Hopkins. It turned out he had an infection that was assumed to be something that he caught in NICU that had laid dormant and finally came out. He was covered head to toe in a rash, his skin began to peel and his eyes were swollen shut and full of puss. Despite all of this, he was still a very good baby and brought us smiles every day even though we were fighting the tears. The doctors weren’t sure exactly what type of infection it was. We had seen several doctors and interns and people were photographing him, observing him and testing me. They performed a spinal tap and multiple tests.  They still were not positive why our little boy was so sick.

At one point we were told that if we had planned on getting him baptized that we should considering doing it then, just in case, because they weren’t sure what the outcome of this would be. So basically, they were telling me that there was a chance that he may not make it through this. Whatever this was.  I was in pieces to say the least.  I tried to keep it together, but tears were in my eyes permanently those few days. I did all I could do… I loved him and prayed.  I prayed more those few days then I had ever before in my life. We declined to have him baptized. We talked about it with my parents and we decided that he was making it out of the hospital that we were having hope and faith and that when he was better he would be baptized by family around him in our church. Things became worse before they became better, but they did get better. The doctors and staff at John Hopkins was absolutely amazing.

Doctors explained that is was possibly Staph scolded skin, but they still were not sure, therefore, he spent a week in the hospital on four different antibiotics by IV. It was heart wrenching to see him like this.  But day by day, he was getting better and stronger and our happy boy was coming back to us.  After he was discharged, Chase was a beautiful, sweet, healthy happy baby!

At the age of one, we noticed he was not developing as he should. Just after turning one, we noticed that he was still not speaking at all, and his fine motor skills were not where they should have been. He wasn’t making much eye contact, and when you called his name, even several times, he wouldn’t respond. We called the county, and he began the Infants and Toddler Program in Baltimore County, Maryland when he was 14 months old. After several long months still no words were spoken.

In October 2012, just after turning 2, Chase was still not making any progress. We had Chase evaluated at Kennedy Krieger and John Hopkins. At that time, he was diagnosed with Pervasive Developmental Disorder, otherwise known as PDD-NOS on the Autism Spectrum and Sensory Processing Disorder. Immediately, we began our research and learned everything we could to help him. Chase continued with his speech therapy in Baltimore County, but still no progress was made. It was so heartbreaking to watch him struggle and grunt and try to communicate.  I felt helpless and needed to do something, but I just had no idea where to begin or how to help him. 

So we all learned to use  a little bit of sign language, especially the signs for “more” and the sign for “help,” which helped us a bit with communication and began to limit him hitting a bit when he needed help.

In February of 2013, Chase had a follow up evaluation at Kennedy Krieger. This time they found him to be severely speech delayed. We were told that he was not on the spectrum and to continue speech therapy and enroll him in a typical school.  Therefore, that is what we did. He seemed to love his new school and was excited to go each day. Even though he was making progress socially, he was still not speaking and continued to have other behaviors.

Our worries began to increase, and in August of 2013, he had two evaluations performed; one with Kennedy Krieger and the other with the Infants and Toddler Program of PA. We lived in Maryland, but heard amazing things about the Pennsylvania programs so we decided to look into them as well.  Chase was diagnosed with Encephalopathy, Autism Spectrum Disorder and Mixed Receptive-Expressive Language Disorder as well as Sensory Processing Disorder. They also said he was non-verbal and not to get our hopes up for him to ever speak, and if so that it would be very minimum. As you can imagine, we were heart broken and worried about his future. He was my baby, my world, and I was crushed. I kept telling myself: there could be worse things; and it could have been worse. I knew though we had so many challenges ahead, and  like every parent, you want the absolute best life for your child.  All I could think was that I had no idea how to help him. 

During the interview, I did last year I was asked what were the feelings and emotions I had when learning of his diagnosis. At first, I was hesitant to answer, but I know those who are going through it might feel comfort in knowing that other families struggle with the emotions of it all as well. At least it was helpful to me to hear the stories of others.

 The first time he was diagnosed, I can still remember that day…it was raining and Chris pulled the car up to the hospital doors. We got in and I just looked at him, put my head in his lap and started crying…uncontrollably crying. All I could think was that it wasn’t fair, he had been through so much already with his birth and then at John Hopkins. We could have lost him when he was six weeks old.  We made it through that and thought the worst was behind us. He is such an amazing little boy, and it wasn’t fair. I was so angry and so terrified!  My husband kept telling me it was going to be ok, that he would be ok.  I wish at the time I had his confidence.  I am so grateful though that he was able to keep it together in that moment because I couldn’t.  

Most of all, I was thinking about all the “what ifs” and his future. It was like the second they told me his diagnosis, they proceeded to tell me to be prepared for him to never speak, amongst other things.  They sent me out the door holding my perfect baby with now an unknown future and a brochure on Autism Spectrum Disorder. It was in those moments that I thought about everything…what if he never speaks, what if he doesn’t want to ever be affectionate anymore, what if he can never go to school without an aide or some sort of assistance, what if he doesn’t have any friends, ever play sports, isn’t able to drive or live on his own. All of these things that you just assume will happen when you have a child were now swirling around my head as completely unknowns. Those unknowns haunted me everyday for years and still do at times. I longed to hear his voice, for him to call me mommy and I had no idea if I would ever experience that.  My heart also ached because I knew he was trying to always tell me things and I had no idea what. 

It was such a roller coaster back and forth with the diagnoses, and I think that the last time hit me much harder then the first time. I’m not sure why, but it did. I thought we were past something, and now the future looked different and as if it was taken away all over again. I was even more upset because of the time we wasted not having him in therapy and where he needed to be. I felt as if we were starting over, but now a year behind of where we could have been. At this time he had just turned 3.

Chase was such a happy child and was just the sweetest thing everyday! I tried to focus on that.  We did have a hard time with everything though. Im not going to lie and say it was easy. Now, today, things are easier.  Looking back though, it was very hard.

I started to shut out friends and family, and stayed to myself as much as possible. As ridiculous as it sounds I got tired of people saying “I understand” or asking how I was.  I know they only meant well and they love me, but I was in a dark place. I just kept thinking “they don’t understand…I know they want to, and they try, but they don’t.” When they would ask how I was, I would I think of everything positive that is going on, because no matter what kind of day I had there was always something positive I could find even if it was just a cute look Chase gave me.  The truth was when someone asked me “How are you?” I felt like screaming, “Do you really want to know?!?! I’m not ok. I’m worried. I’m sick to my stomach every day trying to learn to care for my child in the proper way and give him what he needs while trying to except that he may never speak!”  Chris and I began shutting each other out too.  Mostly because if we talked about it, we would cry. We didn’t want to cry, so we just didn’t talk about it.  He would say “Everything will be ok. Take one day at a time,”  and I said “I know.” That is what we did. We just did the best we could for Chase every single day. 

“God only gives special kids to special people.” This was something I heard often as well. I would say “Thank you,” and walk away. For some reason, that saying would always leave me with such mixed emotion. I don’t think that we are special. I think we fight for our child and do everything we can for him. I think we are the lucky ones because Chase is such a blessing. I thank God everyday for giving us Chase.  

The first time Chase was diagnosed, I began to read articles, call doctors, look for therapies, and read books.  I thought the more I knew, the better I could help Chase.  I felt as if I shut every part of my life out, and I only had two things to do; educate myself and help him, fight for him.  I quickly learned that doctors, schools and therapist aren’t going to fight for your child, you have to do it and you know what’s best.  So we fought.  We fight everyday!

As time went on,  I opened up to family more. I began to speak more openly about it, and I went to a little bit of therapy. The more that others heard about Chase, the more support we were able to get.  I was able to meet other moms with children the same age as Chase and others with older children that were on the spectrum. I was able to get other perspectives on it.  I didn’t feel so alone.  Eventually, I had a few concerned parents contacting me asking me what the signs were and where to go; parents saying that they were worried about their child.  Keeping it inside only made things worse. The moment I began to open up, things started getting better.

We began to join associations and participate in the Autism walks each year.  Our team is Chasing Dreams.  We are so blessed with so much love and support.

Many people ask us if there were there were any warning signs. The main signs for us were no speech, little to no eye contact, not responding to his name and how he would play.

For us, the largest sign was him not speaking at all–not even saying “mommy” or “daddy.” He had little to no eye contact, wouldn’t respond to his name, and would flap his arms a lot. He would also grunt, almost an angry grunt, a lot. He had no interest in interacting with his peers and hated interrupted play or adult-directed activity. He wanted to play alone all the time. I remember him being at parties and all the children playing, and he would be in the corner on his own, or we would have to sit in a different room away from everyone. He also was very “organized” for a toddler. He was put all of his things in different places, and they could not be moved. He would line up his toys or put them into a pattern. He would organize my husband’s shoes in the closet in a certain pattern. We had to read the same books every night.  If we told him we were going to his Grammy’s house, and we would go a different way, he would become so upset. Everything had to be organized and lined up and familiar. Change was so hard for him.

His appetite was also a factor. Up until he was two, he would eat everything we ate. I made all of his baby food homemade, and he would eat exactly what we ate most of the time. Then it was like one day a switch went off, and he stopped eating. He would only eat a handful of things. He completely stopped eating fruits and veggies, which were the majority of his meals; no meat, no potatoes, no pasta or mac-and-cheese. We couldn’t get him to eat anything beside one brand of apple sauce. It was the only one he would eat aside from blueberry baby yogurt . We quickly became aware that you couldn’t feed him something that was a different brand, he would only drink certain juice boxes; two to be exact. If you poured a different juice in his cup he would know. He inspected everything we gave him.

Chase faces challenges everyday. We try so hard to keep his days as routine as possible.  If were going out, I prepare for things in every way that I can thinking of all the things that could trigger a negative reaction. I prepare and I head them off.  Lately, we have been told to mix up his routine. Routine is good, but life isn’t predictable. I can’t always be by his side. So, now he is being challenged with new things and new routines, and I am having to let go a bit.

The biggest challenge by far is communication.  He can communicate with us the best because we are in tune to his wants and needs.  Peers, teachers, and other family and friends are where communication is very difficult.

Last year, his teacher told me several times that she knows he is trying to communicate, but she just can’t understand him and feels so bad.  Today, I am very proud to say that he is speaking. In August of 2014 he began to say words here and there. Those words turned into two words here and there and now, on occasion, he says full sentences and even sings songs.  He is truly amazing!  He works so hard everyday!  He is pushed and pushed by teachers, therapist and us. He just keeps going with a smile. He has his frustrations, but he moves past them.

Communication with peers is still the most difficult.  Most children are amazing with Chase, but it’s still a struggle. Even when he tries to speak, it is soft and not always clear or in phrases that children do not understand.  Sometimes, he uses tapping or gentle pushing or pulling as a form of communication, and other children interpret as him being aggressive. Even though his communication has become so much better, and he is talking, he still relies on touching, pushing, and pulling for ways of communication with children.  Some children, however, do not understand, which is difficult for me and Chase. He has been called weird and strange. A little girl told him “you can’t play with us, go away, you don’t talk, you are weird.”  It is hard to see, hear and know that it happens.

He has never been able to tell me when he is sick until this year, but it is limited. He will say, “im sick.”  I will ask, “what is hurting you?”  He just says, “no.”  I ask, “does your head hurt?” He responds, “yes.” I ask, “does your throat hurt?” He responds, “yes.”  I ask, “does your hair hurt?” He responds, “yes.”  I have to rely on mother instincts. Sometimes, they are on point, and other days, I struggle a lot. We go to the doctors, a lot. I am sure I drive them crazy. 

I know his communication and speech will only get better and better; and that is so comforting.  I am beyond amazed at his progress and so blessed.

For years, I would just sit and watch him. I knew he was smart. I knew he was taking in everything, yet I never knew if he was comprehending everything. He would grunt and wave his hands and moan, or just stare in silence. I just never knew what was going through that little mind. It turns out that he was learning and retaining everything the entire time. His knowledge is nothing short of AMAZING.  Currently, he knows some Spanish, some French, all of the planets and all about the solar system. He knows almost every single world flag, every NASCAR driver, car number and sponsor.  He knows world landmarks, can identify every the states in the United States. He memorizes books that we read.  He can recite them word for word.  Most recently, he is teaching himself sign language from an iPad and knows a good amount. I could go on and on. If I am reading his National geographic books and mispronounce an animal, a planet, country or landmark, he corrects me.  It is just adorable.

He has come so far, but we still have a long road ahead.  Socially, he is still not where he should be. If I ask him a question such as “How was school?” or “What did you do in school?”, I get no response.  But he is talking and thats huge; its everything! It is what we have been praying for everyday!  All we have ever wanted was to hear was our son’s voice, and now we do!  It’s magical!

It has been a long road to get to this point; to where he is.  I am not sure why he began speaking. I am truly thankful everyday that he is, but I cannot tell you what it was.  I honestly think it was a bit of everything he does; his treatment plan.  

Finding treatment for Chase was extremely difficult and frustrating. If I had time, I would fight for a better system for parents and children. Maybe one day.  Baltimore County only offered one program, and it was awful. I cried sending him there, and he cried. We had been on a waiting list for Kennedy Krieger for speech and OT for years.  We have had several evaluations there, but never any treatment or therapy. They kept telling us what was wrong, but offered no solution. They push early intervention, but there were wait lists everywhere you went.  

In 2012, we found a school in Pennsylvania that offered a special needs program at the local elementary school 3 days a week. My brother owns a house two minutes from this school and coincidently decided to put it up for rent, so we moved from our Maryland home and rented it. We took a leap in hopes for better education for him, and it was worth it. The program is amazing!  He has had the same classroom and therapist there since day one, which is great because stability and routine is so important.

April of 2014, we bought a home of our own in York County, Pennsylvania making this a permanent move based on Chase’s education. In June 2014, his special needs school suggested we put Chase in a typical pre-school for socialization purposes. So, we enrolled in a private school a few minutes from our home.

In July of 2014, I came across an amazing place called Leg Up Farm in Pennsylvania. I immediately called, scheduled a visit for a tour, and were put on a wait list. In late September 2014, Chase began therapy there as well.

So a typical week for Chase…

Monday –  Preschool 9:00am-1:00pm

Tuesday – Therapy day at Leg up Farm starting at 11am. Music, Occupational Therapy, Speech, Feeding, and Equine. 

Wednesday – Preschool 9:00am-1:00pm

Thursday –  Leg Up Farms

Friday – Preschool 9:00am-1:00pm and  Gymnastics at 1:45. Currently, he is in a typical class here. Originally, he was going there in their special needs program called “I can do it too.” He worked one on one with a therapist. Then, 4:00pm – 5:00pm swim lessons. Gymnastics and swim help in so many areas.    

Saturday and Sunday – we are home, usually relaxing or doing something fun, but as our summer project last year, we did create a room that was his learning and art room. It has a map of the United States which he knows all of now, a chalkboard, easel, art table and tons of books! We do exercises, art projects, flash cards and lots of reading with him. We even do feeding therapy at home.

He is the busiest five year old I know, but I think it has all helped him get to where he is today.  I could not be more proud of him! I love watching him grow, learn and find his way and his voice.

I feel like each month there is something big he has accomplished.  Just the other day, he said “I love you” to my husband unprompted.  I cried…happy tears, of course.  He walked across a balance beam without needing help, which is huge.  He has been writing his name.  The smallest things right now are the biggest victories for us, and we celebrate and thank God for every one. With every little accomplishment, there is hope and excitement.

His fine motor skills are getting better. Fine motor has been a huge struggle for him. His gross motor skills are improving as well. He can now walk on a balance beam, he can take his coat off, put his shoes on, he can jump and open and close his legs. I know it doesn’t sound like much but these are things he couldn’t do before and now he can.

He rides his horse with assistance by his side, but for the most part he can ride. He talks to his horse and gives her commands like: “walk on”, “whoa”, and “trot”.  He brushes and feeds her.  It is an amazing thing to watch. He really has a connection with his horse.

He is on t-ball teams and soccer teams as well.  He is doing so well with all of them.  Indoor soccer this year was his first indoor soccer experience, which was a little harder because of the noise. He couldn’t focus and would cover his ears and a lot of times cry when someone scored and the crowd cheered.  It was tough, but he didn’t quit; he kept playing.

Last year, I was asked how to support a child with autism.  In my opinion, whether you are the child’s parent, a friend, or family member, I feel that the biggest thing is understanding. Put yourself in their world and be patient.  Patience and understanding are huge. Chase thinks differently. You need to think how he thinks so you can see where he is coming from so you can better help him.  I have tried to always be prepared for what is ahead on any given day and learn what triggers him and what relaxes him.  Learning to calm them is so important.  Chase has huge meltdowns sometimes. I have found things that work and things that definitely do not.  I usually sit on the floor, hold him and count or sign to him. He likes “Baby Mine” — the song from dumbo. Motion is really important along with calming and soothing. We take deep breaths together. I remind him to calm down, hold his hands and we breath together in and out. Every child is different. This is what works for us. 

Make sure they are getting the help they need. Find a program that fits their needs. It’s hard. For us, it was really hard, but we found amazing ones and couldn’t be happier.

Last year for the blog, I was also asked, “What is the best way to support a parent of a child with autism?”

We have been blessed with organizations donating to the cost of Chase’s therapies at Leg Up. Financial donations are great, but emotional support is needed the most. We have the largest support system anyone could ask for.  We have friends and family that show up for everything for him and those that are always there for me to lean on, to cry to or to just be there when I am having a bad day. I don’t believe anyone that isn’t in our situation can truly understand, but they try and that means the world!  They play with Chase and interact with him. They try to get on his level, and they are supportive of us.  It’s important, for me, to have people that I can call when the day is rough, or when an evaluation was bad, or I’m just having a bad moment. I’m blessed that I do!  Just be there for the parents. Their child is going through this and it’s hard, but it’s even harder on the parents watching their child go through it.

I am truly blessed to be Chase’s mom and to have such a great support system.  Chase is an amazing child!  I am so very grateful to be able to be his mother each day!  He is my everything, and we will continue to do whatever it takes for him to succeed!  He is beyond amazing!  I cannot wait to see what the future holds for him.  From this point forward, I will be sharing our therapy and Chase’ progress on here. Thank you so much for those who took the time to read this and to all who support us each and every day!

To those who have a child with Autism:

The best advice I can give is just love your child for who they are.  You didn’t choose this, but they didn’t either. So be there for them, do something fun with them everyday, and never ever let anyone set limitations for your child.  Chase has already proven doctors wrong.  Also, don’t avoid things because you think you child can’t handle it.  At first, I would jump to the conclusion that he couldn’t do something or that he would cry or be upset, but it turns out I have been wrong. I would never have imagined he would love roller coasters, but he does. He loves boats, the beach and amusement parks. He hates loud noises, so who would have thought that he would love these things? Think outside the box, and come up with activities they like that also promote socialization, gross motor skills and/or fine motor skills.  Chase loves music class and gymnastics.  He loves chalk on the driveway. He is playing soccer and t-ball.  Now, we have some issues during these activities, but he is doing them and enjoys them. That is what matters. We hope one day to take him to a NASCAR race. He loves NASCAR. We are still always thinking of trying new things. Even if they are little things like baking or planting seeds in a garden.  Some things he loves and some he doesn’t.  We just try to keep him active and engaged and incorporate therapy he needs into fun things. 

It gets easier! I promise. The more you have a routine and your child is where he/she needs to be, the easier things become.  Every day will still offer challenges, and I would be lying if I said I don’t break down every now and then. I do. And I still do a lot after playdates with my friends and their typical children. It’s so hard watching your child struggling to socialize and be a part of things. Just take one day at a time, cherish your moments with your child and tell them you love them everyday.  Even if you don’t think they are listening.  

One last thing, evaluations and progress reports from school/therapy can be overwhelming and it seems like they are popping up all the time. No one told me what to expect going through any of these, especially the exhausting process of evaluations at Kennedy Krieger.  Weekly, monthly and yearly. If you’re anything like I was, these truly bothered me. Crushed me. I would sit there while doctors, therapist and teachers showed me that my son at the age of four was performing at the level of a three year old, some cases an 18-24 month old.  That has been  going on since our first evaluation at the age of two where I was told he couldn’t accomplish things that a six month old could. It is hard to hear.  I would cry each and every time.  Now, I realize that our society is so focused on what our child is suppose to be doing and what our child can’t do that they don’t stop to see what they can do.  My child can name all of the world flags. I can guarantee you that not every five year old can do that. Most adults can’t do that. I can’t. But there isn’t a box for that on the evaluation sheet.  So I started to look at evaluations in a different way.  I focus on what I know he needs to learn and do. I take in what I am being told, but then I also look at what my son has accomplished and what amazing things he is doing. In some cases, these things are extraordinary.

I am by no means an expert. I am just a parent that stays interested and tries my best everyday.  I am open to chat if anyone is interested.

  1. Mary Marantz says:

    Hey Girl!

    Wow, what a POWERFUL story!! I know that must have taken so much COURAGE & vulnerability to put this out there…but just know that it counts. And I can’t imagine how many people will be helped by this!

    xo
    M:)

    • admin says:

      Thank you so so much Mary for taking the time to read this. Your response means so much! I hope it does help others and also raise awareness. Thank you!

  2. Christian says:

    Way to go babe, I love you!!!

  3. Yes!! I loved that you shared about your beautiful family!! Love your heart, and I know this story will connect with so many others!!

  4. Steph Shanbarger says:

    HI, Shannon! I so enjoyed reading you personal story. Thank you for being so open and honest. You have the best attitude and I am grateful that Chase has such a great mom. He is such a sweet boy. He always….every time…says Hi to Logan and me. It means a lot to me that he wants to come up to Logan at LUF.
    Keep up your wonderful mothering. Thanks for sharing your story.
    Hugs,
    Steph S

  5. Mary D says:

    Your story is powerful and inspirational. Thank you for sharing, as it is sure to bring courage and hope to others.

  6. Jessica says:

    Wow, what an amazing journey! You have such a bright and beautiful child. I’m so glad you shared your story, I really enjoyed reading it.

  7. Donna Clayton says:

    Shannon, all I can say is that I have so much respect and admiration for you and Chris. You two have created a miracle with your love and devotion to Chase. It’s absolutely amazing how far Chase has come. It’s truly the grace of GOD giving you the strength and determination you need every day to give Chase the opportunities he needs in his life to help him along to be the very best he can be. You are an inspiration to parents with children of special needs as well as to all of us. GOD bless you, Chris, Chase and your beautiful baby girl Olivia.

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