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Epilepsy, Autism and My Sebastian

Sebastian was born February 2013. He had a hard start in life, was delivered via c-section and put in intensive care unit for respiratory distress. We were discharged 5 days later, he was a healthy happy boy. One early morning, when Sebastian was 7 months old he was playing when my husband noticed his head went back, eyes rolled up, turned blue in the face and started shaking. Ill never forgot that day. It was the first of many seizures to come, I have lost count. Sebastian was diagnosed with Epilepsy. We were told to keep an eye out on his development. My husband knew there was something wrong. When Sebastian was 15 months old he started showing autistic traits. No communication at all, only babbling, no pointing, hand flapping, bringing objects close to his face and shaking, having to always have two objects in his hand, not playing with toys and he really sat still. He also has an obsession with socks, he has to have socks in his hands. Sebastian was diagnosed with Autism at 19 months, one year exactly to the date, after our epilepsy diagnose. I cried and cried, what more can my little boy go through, it’s so unfair. I hope that his little sister who is 5 months old doesn’t endure the same fate. We are waiting to get him into an early intervention programe starting next year. In Australia there is only one government funded place in each state, the waiting list is huge. If unsuccessful then we will enrol him into a private funded place, it’s so expensive. I can’t wait until he says Mamma or Dadda and gives us a big cuddle and tells us he loves us. I hope that day will eventually come.

Violet M
Melbourne, Australia

The Sweetest Boy on Earth!

My son, Adam, was diagnosed with Autism Spectrum Disorder when he was just four years old. He had a hard time in school. He was passed around from class to class. He finally found a place in one of our local schools (Ft. Branch Community School Life Skills) where he flourished. He went from being semi-nonverbal to verbal and is now learning to read. He goes on outings with his school where he learns about social skills and handling money. He learns to interact with other people and what to do when someone approaches him. But more than that, he is a sweet boy. He loves people and loves to make new friends. He's not afraid of strangers. He thinks of everyone as a new potential friend. He is now 11 years old and has an in school job (he sells coffee to the teachers 3 times a week) and he is well liked and received by teachers and students in his school. I love him more than anything in the world and am so proud of the progress he's made. Some would balk at the fact of having a special needs child. I celebrate it. I couldn't ask for a more wonderful child than my son. I strive to be more like him. I think we all should.

Marti Ketterer
Oakland City, IN

beating the odds

I didn't ask to be different. I didn't ask to be judged by society. I didn't choose to become autistic.... I am autistic. I was born in Houston Texas may 10th 1990 weighing 7lbs, 7oz. I was a long healthy baby with red hair. I did normal things babies do such as crawl and walk. when I was about 3-4 years old my mum and dad knew something was wrong. they had me checked out. the diagnoses was mild mentally retarded. when I was 7 years old, the school district referred me to a child psychologist in Houston under the care of Dr. Jesse David Wood. he checked me out which took hours. when he came out he told my mum and dad i had autism. I saw tears in their eyes and didn't understand what was going on. I was in speech therapy, music therapy, etc. I was picked on a lot due to my disability. when I was 8 I started picking up the violin and everything changed. I took violin lessons, played for recitals even went to orchestra camp. when I got into middle school I was in orchestra from 5-12 grade. i got to go to competitions and play in front of judges; I would come back with medals and certificates. in 2008 I played for my sisters wedding and was offered to play for other events such as church, weddings and banquets. I also joined the conroe symphony orchestra. when I graduated from High school I went to Eastern New Mexico University in Roswell NM to study culinary arts and graduated in may of 2012. Now I am 24 years old living in Santa Fe NM with the love of my life Matt. I do have my ups and downs but I still get help from therapy. unfortunately I don't have my parents around to hug me and say " I'm proud of you" but they are in heaven saying that. I may have autism, but I beat the odds and proved those who said I couldn't do anything wrong.

Jamie Murphy
Santa Fe, NM

Joshua-Just the Beginning.

Our son Joshua is 4 non-verbal Autistic He can say a few words but most of his words are 'half words' or 'sounds like' words. He is super cuddly and he's very friendly. he gets social cues and he understands how to respond to them and he always tries to make people laugh with bold facial expressions.

Raising a child with autism is really challenging and rewarding at times, as most people who read these already know. My son is easily excited and he begins to arm flap and jump up and down, even over something simple. He does not do well when there's a change of scenery or a change in 'plan'. He wanders and in public I have to keep a strict eye on him. At home, he has been known to roam out into the back yard or down the drive way before we put up alarms on our doors to let us know if the door is opening. He can open child safe doors and locks.

He's limited in fine motor skills, and he still uses a fisted-grip when scribbling. He still can't make shapes or differentiate between colors. He tries so hard. We are just in the beginning of our journey and have so much more to learn. He goes full time to a special ed preschool through the school system and sees OT and Speech, and he goes to outpatient therapies in the summer.

We are always scared that we don't know his needs, we feel like he's trapped in his mind. His eyes speak, he's expressive and has really great eye contact when he wants to communicate something. I can feel it in my bones that he is improving his speech. These past two months he's been trying to string multiple words together!

Prospect, CT

Even Though I Don't Understand....

I created this piece using an original song I wrote for a showcase I took part in. The song is called "Even Though I Don't Understand." This is my love letter to Griffin and to all the Griffins out there and their parents. Like my blog, the purpose of this piece is to connect with others on a similar journey, and to share with the rest what it is like to parent an amazing, complex, and loving child like my Griffin.

Missy Vaughn-Dean
Chicago, IL

Life of an Asperger

I'm a 26 year old from the Philippines currently waiting for the results of the Licensure Examination for Teachers. Ready to share.

I was born with autism as a result of hard labor my mother had at me. Couldn't talk until four years when I started to wandering over the school disrupting classes saying "buddy-buddy-buddy-ohhhh" until my fifth grade when my the classmates took on bullying against me because at the time there were no special ed classes or teacher that will take care at me. On my first year of high school (now Grade 7), some psychologists of a private school took notice about my intelligence higher than normals with autism which was why I was sent to Manila on an almost weekly basis. Still they can't figure out what kind of disorder I have. I stopped schooling the rest of my high school due to it.

Even at college, some classmates can't figure out my behavior. Often I was teased. Completely ignored. Post college, the financial crisis took a toll on my part and the business processing-outsourcing people did not accept me due to my speech difficulties.

The breaking point was the moment my brother stayed at home for 18 months and took over my nights of computer usage. Most of the time he made harsh thoughts about me trying to be like as normal people does. I want him out and he's a physical abuser. Just by refusing to borrow him my laptop he kicked over my head multiple times and threatened to sent me into mental hospital if I did not shut up. Until his attempt to get into the bathroom where I was in cause to lose temper and kicked him out of the house. Even if my sister or mother tried me to forgive him, I chose to move on because he represents negativity in life.

Finally, my mother one day tells me I have Aspergers. I believe that adults with Aspergers deserves a life to the fullest. Now, I am teaching people with intellectual disabilities and I hope someday they would endure too.

Trece Martires City, Cavite, Philippines

My Super Hero

August 29th 2009 I welcomed my first son into this world! Extremely complicated labor I wasn't able to hold him until the next morning. When they placed him in my arms my eyes filled up with tears and my heart with joy. I was alive to see this moment now and it was time to start our lives together. Everything was good typical infant, as he started to grow though I started noticing things with him to me that weren't right. He would scream and grab his ears to any loud sounds, music, voices, crowds, I kept telling myself maybe he is just overly sensitive, I tried to take him everywhere I went, but would run into issues with crowds and loud sounds. His eating was another big concern as he would only eat certain things and at 5 years old still extremely picky. Now at 5 he sill still smell things and certain textures he still wont touch. he has complete break downs because he has a hard time communicating his wants and feelings, I have held him and cried with him I have cried in my car, to others, because I was just so lost, what was I doing so wrong as his mother to make him this way?. At a year he was tested for Autism and they at that time said they found nothing but was concerned for the Sensory Processing Disorder and wanted him re tested at 5, that was 4 years ago. September 27 2014 I received his diagnosis ASD/ Sensory Processing Disorder. I broke down, I had finally gotten the answers after 4 years but now I blamed myself. it wasn't until recently i stopped, I now do not. He has a diagnosis but that changes nothing with who is he is, he is my little boy and that's all I see, we are now in therapy 4 times a week ABA Therapy starting soon. Hes not broken or weird, hes my sweet beautiful boy. I will be his voice and he will teach me! Hes my Super Hero forever!

Davena Sigler
chesapeake, VA

My Super Hero

August 29th 2009 I welcomed my first son into this world, extremely complicated labor I wasn't able to hold him until the next morning, when they placed him in my arms, my eyes filled up with tears, and my heart with joy, I was alive to see this moment now it was time to start our life together, all was good typical infant, as he started growing I started noticing things with him not adding, by 6 months I knew some things were just not right, he would scream and grab his ears to any loud sounds, music, voices, crowds, I kept telling myself maybe he's just overly sensative, I tried to take him everywere I went but would run into issues with crowds and sounds. His eating was another big concern as he would only eat certain things once started on foods, he smelled everything I was like oh ok well he just loves smelling stuff, he had and has severe emotional break downs often and has a really hard time with his attention span, at a year he was tested and they told me then they thought Sensory Processing Disorder this has went on for about 4 years, ive chosen to think my child's fine he will outgrow whatever it is, He hasn't on September 27, 2014 I sat and received his diagnosis, ASD/Sensory Processing Disorder, I just broke down in tears, I asked what did I do? Did I cause this? I blamed myself! We are now in therapy 4 times a week, and I realize, my son is not a diagnosis, while he's on the spectrum, I see my son! I see my super hero, I am reminded daily that he's just a typical 5 year old and that his little brain is just wired a little different! I will be his voice, and he will teach me! He has taught me so much In just this short amount of time after his diagnosis, I am so thankful for the early intervention for him im already seeing improvements. My super hero forever!

davena sigler
Chesapeake, VA

The girl with Autism who will conquer the world

Hello, I am Darcie, I was diagnosed with Autism at only two years old, I have had a lot of dreams in my life, but I never believed in myself because I always felt stupid, but I realized one day, I am NOT stupid.

I have worked hard to accomplish goals, including having a 3.5 GPA in college, having a job for almost 10 months, having a wonderful boyfriend who loves me, having my own place, having a cat, being able to cook for myself.

I one day plan on either being a Cardiologist, Anesthesiologist, Physician, or Veterinarian, because I love science, and helping people.

I have accomplished so much, despite the fact that I have a disability.

SO my point is, if you have Autism, and you feel like you can not do something, try it anyways, you never know what may happen.

Burton, MI

love of my life

When I first found out I was pregnant with my son Hayden, I was 5 months along already. He was the best thing that ever happened to me because he saved it.

My life was going down the drain and fast but once I found out then gave birth, my life has never been better.

My son wasn't diagnosed until he was five years old, should half way through pre-k. I may not have liked what I heard but it explained so much to me as well.

Ever since then, my son has become brighter everyday. He may test me or the teachers, but I'm always learning. He teaches me to view the world differently then I could ever imagine.

Everyone he views as a friend and he doesn't judge. He loves everyone and makes my life full. I feel like through him, I see a million rainbows. Nothing is ever wrong or right, it just is. He's a strong independent boy and is laughing all the time. His smile lights up my world and I couldn't be more proud.

Deanna Eaton
Mount Airy, NC
Summer Sorbet Tie Dye Tunic
Sisters Are Like Stars Braided Bracelet
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