Friday, April 27, 2012

Testing, Testing

Hi there!

This week was another busy one with Caleb. On April 25th I took him back to his psychologist office to do his spectrum and developmental testing. They wanted to see where he stood on the spectrum as well as gauge his strength and weaknesses.

I had a hard time with it for some reason, I think it was just the fact that I couldn't hold his hand for this one. He did the testing with the administrator one on one. He did well all things considered she says. Even though using the knowledge he has is hard, she said the fact that he can still indentify things is good.

He can identify most of his shapes, colors, numbers, and some objects. He can tell you the purpose of some objects and even tell you some primary colors that you can mix to make secondary colors. I was so proud. All of those flash cards he got from his Aunt Kat and Nanny have really paid off.

Interaction, speech, behavioral, and sensory are the areas he struggles in. We already knew most of that. Even though he struggles in those areas, he is doing far better than some other children his age with this disorder. They are pretty sure that with a little therapy he will be able to start school with his class on September WITHOUT medication.

He has his very first therapy appointment May 1st. I am a little nervous but more for myself than him, I don't like not being there to hold his hand. All of his sessions will be one on one with a therapist and his psychologist approved him.

This week we also had an information seminar that we went too which was really informative. I got lots of ideas on organization and keep his records straight which was helpful because I wasn't sure where to start.

This weekend the local movie theater is hosting a sensory friendly viewing of The Lorax that we get to take him to. They keep the lights on and the volume down so no one gets overwhelmed. I'm pretty excited about that.

That is about it for us this week. Next week promises to be just as full and fun. He also sees the opthamologist for the first time as well.

Hopefully the mowing around here gets done soon so we can take him to the park to play.

For my autism fact today I want to share a few statistics with you.

  • Autism now affects 1 in 88 children and 1 in 54 boys
  • Autism prevalence figures are growing
  • More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs the nation $126 billion per year
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are four times more likely than girls to have autism
  • There is no medical detection or cure for autism

  • Until next time

    One very blessed mother

    Sunday, April 22, 2012

    The Beat of a Heart

    Hi all. Miss us? Well, we can't have that now can we. Joking. I am sitting here watching Caleb meticulously craft a princess castle out of his legos while instructing Andrew on the finer points of being a mermaid. Yes, you heard that right Andrew is pretending to be a mermaid. It was on an episode of Dora the Explorer that they were watching earlier today.

    Watching him play I smile to myself as I catch little trade mark quirks that have worked themselves into his funny little personality. I see his love of books and stories of all genres and nationalities and his meticulous perusal of them, a quality he inherits from his Aunt Kat. She has taught him to always ask questions, even more so than I have. His contagious excitement at any and all new discoveries, free enjoyment of all new things, and his free laugh are reminiscent of his Aunt Lauren. His innate love of football and joyous cries of "ROLL TIDE" are all his Auntie Bethany. I see the quiet way he takes in all of his surroundings and the fierce way he protects all he loves and it reminds me so very much of his Aunt Kelli. All I can do here is smile.

    It brings me back to his appointment in March where I sat across from his psychologist as she observed him and asked her questions. Nearing the end of the appointment she looked at me and said that she had never met someone quite like Caleb and went on to tell me that he was "an amazingly well adapted little boy considering his problems and his disability". I smiled at her and gave her the only answer I could. "He has an amazing family."

    So, tonight, I thought I would help you get to know him a little bit better by introducing you to some very important people in Caleb's world.

    First I want to introduce you to his Auntie Bethany.

    Boy does he love her! She has been one of the best friends I could have ever asked for. She is funny, smart, and has always hugged and kissed him coming and going. Somewhere along the way she took our little Tennessee fan and turned him into an Alabama fan. Now after every touchdown he shouts. "ROLL TIDE". Well done B.

    Next up. I want to introduce you to his Aunt Kelli.

    She is a pretty special lady. When I met her I was mousy, quiet, and never questioned anything. She not only taught me to be a better and stronger version of myself, she has turned into a well of strength and information. She has been a strong hold in the midst of the craziness that has been our world the past three years. From her Caleb has learned to quietly take stock of anything and everything. He has become an even fiercer protector of those he loves and his people and we owe that in part to this lovely lady right here.

    Next up is his Aunt Lauren.

    There are hardly words for this amazing lady right here. She has been his fiercest protecter, his best friend, my best friend, and a source of all things fun. When Halloween was thought to be ruined, she brought herself all the way from Maryland to make it special for him. When his birthday was in trouble, she again got in her car and drove all the way down to make it special for him. She loved him, spoiled him, encouraged him, and carefully fostered an innate sense of fun and laughter in him. She has been there unfailingly for us and for him since the day she entered his life a little shy of his second birthday. She has brought so much joy and laughter and fun to us and he shows us pieces of it every day.

    Lastly I want you to meet my very best friend in the entire world. Meet Caleb's Aunt Kat, or Kit Kat as he called her before he learned the word Aunt.

    I was pregnant with Caleb here. Around 27 weeks I think. She came to visit me and to strong arm my husband into cleaning the kitchen. Yes that is as funny as it sounds but that is a story for another time. Here is another picture for you.

    His Aunt Kat is one person in his world that you do not ever mess with. He can tell when she is mad, sad, scared, upset, and even when she is sick. Sound extraordinary doesn't it. You should see it in person. These two are two peas in a pod. She calls him her little evil genius and he tells everyone he meets precisely that. She has loved him from the second of his conception and has been a source of strength for me every single  second of his life. She has been my very best friend in the entire world and I am proud to call her my sister. She has fostered Caleb's love for literature and stories as well as his curious nature. She is one of his fiercest protectors, his biggest cheerleader, and his best friend.

    So after "meeting" these amazing people, I hope you can understand a little bit better the amazing little dynamo that is Caleb. He is blessed to have them, as am I. They all work to keep his little world moving and foster and encourage his growth.

    Now for our Autism fact of the day. Autism has no single cause.

    Think about that one for a while and search out your own bits of info. It is a fascinating world.

    Until next time,

    One very tired mommy

    Saturday, April 21, 2012

    Beaches, Dancing, and Meetings oh my!

    Hi all!

    Some pretty exciting things happened this week for Caleb this past week. On April 14th, thanks to an awesome friend, I attended my very first Autism Forum. It was a wonderful collection of different business, organizations, and programs catering to the families of children or adults who have Autism Spectrum Disorders. It was hosted by a local church, Brookwood Baptist Church.

    It was my first attempt at networking filled with information and amazing people. Not only did I get more information but I was able to meet families just like ours. Before I go on I would like to give you a couple of links so you can check out the guest speakers who gave presentations.

    The first was Ms Gabrielle Martino. She work with Disability Rights of NC. She had some really awesome things to say and for parents like me who struggle to get everything in order after the diagnosis it was very much appreciated. From her we learned some effective and efficient ways to be self advocates for ourselves and our children. If you have never heard of the organization and are interested in what they are about please visit the link below.

    The second speaker was a very special young man. I was completely in awe of him. His name is D.J. Svoboda. At the age of three, he was diagnosed with Autism Spectrum Disorder with Psychomotor Retardation. Not only was he in the midst of this forum teeming with people, he was conversing with people and showing them the world he created. Imagiville. It is a wonderful world full of colors and beautiful people. Some of them have disabilities and some dont. He speaks out against bullying and lives by the policy "Everyone Is Special Just The Way They Are". Some of the proceeds from the sale of his craft are contributed to the Autistic Society and his church. I highly encourage you to check out his website and explore his craft. It is nothing short of amazing. Here is the link.

    From the Autism Forum we walked away with two local organizations who cater to Autistic children, disabled children, and those with health issues. I know I keep beating a dead horse here but these people were amazing.

    This past thursday, Jon, Caleb, Andrew, and I attended our very first meeting with the Onslow County chapter of the Autism Society of North Carolina.

    Not only did we get to socialize and converse with other families and caregivers of autistic chilren, but the kids also got some play time with other kids with the disability. It was phenomenal! They included Andrew as well as Caleb. They had a fantastic time playing with other kids. Not freakouts at all. I was amazed.

    Our guest speaker was a representative from a company called Juice Plus. It is a whole food supplement designed to make sure people are getting their daily recommended servings of fruits and vegetables. Because many children with Autism disorder have sensory issues, food and nutrition are sometimes hard to keep up with. Check out their products, I know we will

    Yesterday we attended a family event for B Co in Jon's battalion. They hosted the even in order to give thanks to a very special lady who made it possible for the entire company to travel to New York to bury a comrade who succumbed to wounds he sustained in combat.

    Caleb had only two incidents which weren't that bad compared to others he has had. I took him down to the beach and he was content to play in the sand until it was time to go.

    Over all I think it was a pretty productive week. To have had no therapy as of yet, I am pretty proud of that little guy.

    Autism fact for the day. There are three types of Autism Spectrum Disorder. Autistic Disorder, Aspergers Syndrome, and Pervasive Development Disorder- Not Otherwise Specified. Look them up, you will be suprised at what you will learn.

    Until Next Time,

    One very proud Mom

    Thursday, April 19, 2012

    Meet Caleb

    Come a little closer everyone I would like to introduce you to a very special little boy. Ladies and gentlemen meet Caleb.

    This beautiful little boy is my son and one of the great loves of my life. He's cute isn't he? I think so but then again I am his mommy so I am more than a little biased.

    Caleb was born June 1st 2007 at 1532 at just over 36 weeks. He weighed 8 pounds 5 oz and took my heart by storm the second he opened his beautiful eyes and looked at me.

     His birth was by no means easy. After 26 hours of hard labor, my condition was deteriorating and I was still no where near ready to welcome him into the world. My blood pressure was dangerously high and no medication they were giving me was working. I was terrified. Here I was 19 years old a state away from my family. By the time it was over I became that horror story you see on television who yelps and cusses and threatens bodily injury. After threatening everyone on the maternity floor at least three times to either get him out or give me a scalpel and I would, my mother finally arrived.  Sixteen long hours later Caleb Aaron was born via emergency c-section.

    Five days later my bubbie was placed in my arms and I fed him for the first time.

    His first months were riddled with a million and one doctors appointments but they eventually leveled out and our lives settled into normalcy. I settled into my roll as a mom and two years one week and one day later his brother Andrew was born.

    When he was about 15 months old I started noticing things. They raised red flags but I forged on. Months 15-18 passed in a blur and then he pulled up and took his first steps. Afterward other behaviors started becoming known.

    From there he started insisting that he sleep under his bed and not in it. He wouldn't go anywhere without his lucky wash rag and teddy bear. In addition to those two traits, he began to hit himself and cry at what seemed like random intervals. I chalked it up to him going into his terrible twos.

    Time passed and we moved duty stations from Virginia to North Carolina. I blinked and my sweet baby was 4 years old and ready to start school. He had developed more symptoms and something just didn't settle right with me concerning his behavior and where he should be on the precpice of starting kindergarten.

    As it got closer and closer to time to getting him registered my panic and anxiety grew. I was worried about how he would adapt in a classroom full of other children his age. I set down my foot after two years of fruitless concerns and finally got a referral to a local psychologist who works with children with psychological and behavioral problems and disabilities. All along I had suspected something along the lines of ADHD. Imagine my suprise when she told me that she believed the ADHD was a sympton of the core problem and not the problem itself. What she told me next started our course through the next adventure in our lives.

    The past three weeks have been a jumble of information and blind adjustments. We are learning more about Caleb's specific needs and have started documenting behaviors and triggers. We have been extremely lucky so far as we have had an amazing support system. We have already been linked up with a few organizations and have gotten a lot of super information.

    We have also been unfortunate in the sense that people's general prejudice and absent minded assumptions have already started leaking in. I shouldn't be suprised  after what happened with my husband and his diagnoses but I was just sickened. To take things out on a grown man is one thing but to allow your prejudices to touch the life of an innocent child is a completely different other.

    In his own little way though, Caleb straightened it all out. We have been trying our best to educate ourselves and both sons about Autism. During one such conversation he looked at me with those big brown eyes of his and asked me what it was. I explained the best way I could and afterwards his face broke out in this beautiful smile and he said to me.

    "Wow mommy, I'm so cool."

    Everything else evaporated then. I knew that I would do anything and everything to not only help him understand, grow, and thrive, but I would also make education on the disability a priority.

    So in addition to sharing Caleb's story and our familys journey I will also start sharing one bit of information each post. To those who are taking this ride with us I have to say this. Autism is different in every child it affects. Whether it be their weaknesses or their strengths, no two cases are alike. If you have concerns about your childs behavior  and autism ask his or her doctor because only they can diagnose it.

    My piece of information for today.

    Autism is NOT contagious. You cannot catch it by touching, smelling, or tasting or even being around a child or adult with the disorder.

    All in all my Caleb is already surpassing everyone's expectations. I am so proud of that little boy.

    Until next time I challenge you to do this, learn at least one thing about Autism.

    -One very proud mommy

    Sunday, April 15, 2012

    Hello Blogging World - Remember Us?

    Hello again blogging world. Remember us? We are the Painter family. We consist of Jon, myself, and our two sons. We would like to welcome you to our next adventure.

    During the last week of March we found out that our oldest son, Caleb, was Autistic. Crazy right?! That is what I said as I sat there in the psychologists office while she gave me her base diagnosis. Not once did I think that my concerns of my son's behavior would set us down here, but in a way I am glad it did.

    A mother's intuition is a powerful tool. She almost always knows when and what is going on with her children. I always knew that there was something about him just didn't fit into the normal mould of a boy his age. After two years of fighting and persistancem we finally have answers.

    The diagnosis has come as a huge relief for all of us because now we know how to help. As a mother, one of your biggest fears is failing your child in some way in his or her life. I am no different there. I was always taught that knowledge is power and now that I have that last little piece there is nothing we can't do for our Caleb.

    Since the moment I laid eyes on his beautiful little face almost 5 years ago, I knew he was something special. Little did I know what God had in store for us or just how special he was.

    He has always marched to the beat of his own drummer and forged his own way. I couldn't be any prouder of the little man he is turning out to be. The biggest lesson we have learned so far is that God makes NO mistakes.

    He has a greater plan for Caleb than anyone knows and it just so happens that I was the one chosen to be his mom. I get to guide and love and nurture this amazing little person through his life.

    We are excited about what happens next for him and our family. We invite you to join us as Caleb teaches us to march to a different beat.

    Until next time,

    One very blessed mother