The Faces of the Autism Spectrum: Meet Cade.


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Introducing Cade!

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This is my Cade.
He was diagnosed on the Autism Spectrum when he was 4…he is now 8. Our road began when we noticed some “out of the ordinary” behaviors that we had not seen with his older brother.  Cade enjoyed playing alone, often had issues with things out of the ordinary, and reciprocal interaction was few and far between.  We went in to get advice with his pediatrician, and to see if there was more than just “quirky” behavior.  After a battery of assessments, Cade was diagnosed on the Spectrum with PDD-NOS (Pervasive Developmental Disorder). Cade’s biggest challenge is finding his role in social interactions.  Social overtures do not come easy, but everyday he amazes us.  Each day may bring challenges, but we love growing and learning with him constantly!  He is enrolled in ABA Therapy, in which he truly shows his leadership abilities in his group.  

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Cade is a FABULOUS artist and LOVES creating.  He belongs to the schools Lego Robotics Club, and can create some pretty cool things.  He is a WONDERFUL artist.  His creativity has been showcased  in art shows and contests.  He has won numerous accolades for his abilities.  As we struggle with his disability daily, his father, brother and I, also learn what it may be like to see the world through his eyes.  He has come such a long way.  Cade is energetic, passionate, and has great leadership potential.  Thank you so much for the opportunity and allowing people to educate what “being on the spectrum” really consist of.   Cade is willing to persist in the face of obstacles, tenacious, goal-oriented and is my ROCK STAR!  He is proof that these kids CAN achieve great things, and be mainstreamed and included just like any other child.

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If you are interested in sharing your journey with Autism to help raise awareness of the diversity of the Autism Spectrum Disorder, please email your story and pictures to april at picturedmomentsbyapril dot com. or you can contact me directly through my business webpage, Pictured Moments By April. Thank you!

 

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The {Famous} Faces of the Autism Spectrum: Carly Fleischmann


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Meet Carly!

 

This experience is viewed through the eyes of Carly Fleischmann, a 17 year old girl living with non-verbal Autism.  Based on an excerpt from the book Carly’s Voice: Breaking through Autism, it explores how, for someone with autism, a simple act like going for a coffee can descend into chaos.  Carly’s Café was developed as an interactive video that allows the user to experience Autism from the inside-out, visit carlyscafe.com to enjoy the full experience.

You can get to know Carly more by following her via social media:  @carlysvoice on Twitter and Carlys Voice on Facebook .

If you are interested in sharing your journey with Autism to help raise awareness of the diversity of the Autism Spectrum Disorder, please email your story and pictures to april at picturedmomentsbyapril dot com. or you can contact me directly through my business webpage, Pictured Moments By April. Thank you!

The Faces of the Autism Spectrum: Meet Hannah!


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Introducing Hannah!

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Our life with autism
I was a very young mother, however when my first born Hannah arrived at a healthy 8lb 3oz, I couldn’t have been happier.  She was perfect!  I read every single pregnancy book and every baby book and followed every bit of advice.  But from early on there were signs.  Hannah would cry, for hours, I would hold her and she would cry, put her down, and she would cry.  There were also sleep issues.  Of course I knew sleep would be hard to come by, but this was different, Hannah would stay up most of the night, and sometimes all night.  Family told me how sometimes babies can get their days and nights mixed up.  So I just accepted the advice.  As she got older, I noticed she was behind normal age of sitting, crawling, walking.  Not by much, maybe a month or two.  Again, I accepted the advice of…you hold her too much.  But still in my heart, something didn’t feel right.  While waiting for her 18 month checkup, I noticed others her age were talking some.  Hannah had yet to try anything more than “mama” and “dada”.  I once again was told how some kids talk later than others and I was worrying for nothing, it was just because I was a new mom.  So I vowed, I will give it time, if she still isn’t progressing by 2, I will talk to her doctor.  Hannah seen a speech pathologist 1 week before her 2nd birthday.  We were told that her play skills are excellent, but she was behind on speech.  A week after her 2nd birthday we moved to Alaska.  I immediately set up appointments.  We enrolled in a project teach program and had a visitor once a week who worked with Hannah and helped teach me ways to help at home.  I did everything and more.  I made flip books and flash cards, set a schedule.  But still, no speech, and still experienced sleep and behavior problems.  We then had our first hearing test which came back with no results because she couldn’t sit and hated the headset.  At 3 Hannah transferred into the school district.  She attended part day preschool 5 days a week.  She received speech, occupational and physical therapy.  Her teachers and aids were amazing!

On Halloween night, a month after her 3rd birthday, Hannah said “hello” for the first time.  I was so excited and tears were pouring.  We then had our 2nd hearing test, same results.  We were then sent to Anchorage from Fairbanks for another hearing test.  This time she was put to sleep for accurate results.  Her hearing was fine.  Next came blood work.  She was tested for fragile x syndrome 3 times due to lab error.  The results were negative.  She was progressing great, but we were still met with many challenges.  We met with a child neurologist when she was 3 1/2.  He made trips to Fairbanks to meet with families.  He reported a significant delay.  Shortly after Hannah’s 4th birthday we had an IEP meeting at school.  During the meeting, a teacher mentioned “kids with autism”.  Then shortly after another teacher did as well.  I said…”Hannah’s autistic?!?!”  Of course they informed me that they cannot diagnose her, but she shows tendencies.  I couldn’t believe it!  Of all the things, autism never even crossed my mind.  I still had this idea of what autism was.  That she would have some special ability.  I returned home from her IEP and immediately called her pediatrician.  He put in a referral to Tricare and we started scheduling appointments in Anchorage.  We were sent down for a few days of testing.  At the end, we met in a board room and we were told that in fact, our little girl was autistic.  I remember at first tearing up.  Then it hit me, we HAD a diagnosis!  I turned to our neurologist and said, “what’s next”.

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Today, Hannah is 14.  I almost can’t believe it.  She’s wonderful!  Beautiful, fun, strong-willed.  We’ve been blessed with amazing teachers who have helped her excel even more.  She’s changed so much.  While we still don’t have much clear speech, she’s quick to tell you all about her interests.  She loves ninja turtles, Disney and monster high.  The little girl who never slept, will remind you on the weekends that it’s getting late.  Our picky eater, will try almost anything.  She still enjoys time alone and we have to occasionally push her boundaries to get her to participate in new things.  She still has some dislikes, anything “scary” and certain songs that come on the radio, but who doesn’t.  Also learning what’s appropriate conversation, so we work on social circles.  Life skills are still ongoing.  Such as washing hair, using the microwave, and counting money.
There was a short moment when Hannah was 12 when I realized all the things she likely wouldn’t get to experience…first kiss, marriage, having children of her own.  But then I seen so much more.  She has so many friends. Peers who care about her and include her.  Kids that greet her in the halls at school or in line at the store and even come over to give her a hug.  She has a magnetic personality.  Family that loves her so very much. Two brothers and a sister that despite being younger than her, are quick to help.  She is so much more than a diagnosis to everyone she encounters.  She is Hannah.  The young lady who carries her dolls everywhere, who cries at a sad song and can infect you with her laughter.  Who sings, dances and does “Kung fu”.  Who loves wearing dresses, painting her nails, and wearing purple eye shadow.  Who isn’t self conscious and doesn’t judge others.  She is Hannah and she’s perfect!

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If you are interested in sharing your journey with Autism to help raise awareness of the diversity of the Autism Spectrum Disorder, please email your story and pictures to april at picturedmomentsbyapril dot com.  or you can contact me directly through my business webpage, Pictured Moments By April.  Thank you!

Faces of the Autism Spectrum: Meet Bekkah


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Meet Bekkah

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I was 35 years old when Rebekkah was born. She has 2 older brothers, Ed was 14 and Steve was 11 when she came along. We tried for a long time to have her, and even did 6 months of Clomid. She was tiny, bald, beautiful and perfect. Looking back now, I feel terribly guilty about a lot of things. Before I knew I was pregnant, my back went out. ER and a shot of Tordol and I was good as new. Now I wonder if the shot didn’t affect her. After a bath when she was 4 mos old she slipped out of my arms and landed on her head. Careflight and skull fracture. More guilt.
Bekkah didn’t begin speaking til she was about 13 mos old. Walking about 15 mos. I did notice some pretty bad tantrums when she got upset. Thought it was a girl thing, and shrugged it off. She seemed ‘normal’, but was hyper and fussy late in the afternoon.
She started regular school in Kinder, and was placed with a wonderful teacher. Miss Lee was awesome! She observed Bekkah and asked us if they could test her for ADHD. That was her first diagnosis. She was prescribed Adderol and it was amazingly effective for a while.
As first grade commenced the faculty suspected there were other issues as well. Again they asked our permission to test her, this time for Autism. She had all of the classic symptoms and behaviors. I really at first thought they tailored the test to her behaviors, but soon realized that they were just common Autistic behaviors. I was floored! More guilt. The medication remained the same, dosage went up a couple of times as she grew.
If there is such a thing as a ‘typical’ Aspergers child, Bekkah is it! She is incredibly intelligent, science and math are her strong subjects. She is just now beginning to enjoy reading, now that she has discovered Harry Potter. Her handwriting is so bad that one of her accommodations at school is that she can use the computer for any written assignments. She and her Daddy love Legos, and she has a billion if she has one.
As a child her Daddy was just like her according to him and his family, but of course back then he was just lazy and antisocial. Less guilt for me now.
Towards the end of 2nd grade her teacher noticed she would stare off into space for long periods of time. Sometimes she would come back by herself and sometimes they had to intervene. Her pediatrician said it was Absence Seizures. New fear. By the time we could get her in for a sleep study and to see a Neurologist, the seizures started to manifest themselves physically with shaking along with the staring. The sleep study showed she was having more than 100 seizures per hour.
Her Ped changed her Adderol to Vyvance, and put her on Lamictol and Zorontin. She has been seizure free since the dosages were dialed in. She will be able to stop the Epilepsy meds if she continues seizure free fore one more year.
We tried to find extra curricular activities for Bekkah to participate in, but I have always been afraid that outside of her school friends, others might pick on or bully her. We went to the North Texas Irish Festival one year and she watched the Irish Dancers. She tried to get in line with them to go on stage and dance, and I had to explain to her that she didn’t know how to do the dances. She cried and said ” but mama, I want to know how to dance”. So we signed her up for lessons.

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She is blossoming as an Irish Step dancer! The other girls in her class are very patient with her when her attention wanders or she misses steps. The teacher, Miss Emily is wonderful with her and she has won a medal or two in competition!

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Bekkah is hilariously funny. She can tease and tell jokes. She likes the reaction she gets from other people when she is trying to be funny. But if she is serious about what she is saying, and someone laughs she gets very upset. She doesn’t get jokes or good natured teasing either. She is very literal, and will correct you telling you to get your facts straight.
We were discussing a big rain storm we had recently and how suddenly it began. I said that it was raining cats and dogs. She looked at me, furrowed her brow, went to the window and said. I don’t see any cats and dogs…just rain. I then said are you sure? Cause I think I stepped in a poodle. Again with the furrowed brow, and she said Mom, you can’t step in a poodle, you have to step on the poodle, and that wouldn’t be very nice cause you could hurt him…..
She loves to sing, and knows the words to all the pop songs on the radio and most of the songs on the classic rock sonic channel on directive. She lets me sing with her, but Dads don’t sing or dance so he isn’t allowed to.
Bekkah is 11 now and she has some other strange ideas that I can’t quite figure out. Her oldest brother is now 25 and he lives with his girlfriend in Utah. Bekkah doesn’t like her because brothers can’t have girlfriends cause they are just brothers and that’s all. Steve and his girl are living together and they have 2 kids. Bekkah doesn’t like them either cause brothers can’t be Daddys. Quirky,quacky duck!!
She fixates on certain things. Legos. Mario brothers, ninja turtles, minecraft. For a while she was watching YouTube Videos of kids playing Mario bros games. She picked up some very inappropriate language and when she used a phrase at School,and we found out, she was no longer allowed to watch YouTube. She didn’t even know what she said or why it was bad, because mama drinks tea, and she buys tea bags all the time…
Every day with her is a joy and a challenge. I worry about middle school next year, as there are several elementary schools that will combine. I don’t trust that the other faculties have been as diligent as ours has to make sure every one is kind to each other. Our school has an all female faculty, including the janitorial staff. There are lots if male teachers at the middle school, she has never had one, so I’m not sure how well she will accept a male teacher. After all, she could have it in her mind that only women can be teachers.

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Sorry this is so long, there is still tons more to tell about her…

Educate Yourself On The Spectrum of Autism – What Not To Say!


I wanted to share this humorous, but true video.  Considering the rarity of girls on the Autism spectrum, I think girls get these uneducated comments quite a bit.  Hopefully we can change that stereotype very soon!

 

Follow us on Twitter for some hysterical “Kylie-isms” from our 5 year old Aspie Girl!

@kylieisms1 on Twitter - funny and insightful blurbs from our 5 year old Aspie Girl