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 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!

The Faces of the Autism Spectrum: Meet Owen!


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Meet Owen!

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“Hello fellow Spectrum families! My name is Beth Steggall and my husband Matt and I have a handsome little guy Owen. Owen is three, and suffered a brain injury at birth which resulted in him having a seizure disorder and cerebral palsy. He later developed craniosynostosis resulting in cranio/facial reconstructive surgery at 6 months of age. Among these disorders Owen also has speech, physical, and developmental delays. When Owen turned two he qualified to participate in the inclusion classroom setting with TEIS (Tennessee Early Intervention Services). We were so excited that he was able to begin services here, because he was really struggling with social anxiety in pretty much every setting. Once Owen started services we all began to see significant changes in behavior. Our early interventionist recommended that we have him evaluated through CAPS (Child Adolescent Psychological Services) on Ft. Campbell, because she felt he was also demonstrating autistic behaviors.

Matt and I really struggled with identifying and labeling Owen’s behavioral issues. Was it disability or was it autistic behavior? Owen has extreme texture problems to the point he would make himself vomit and gag on non-preferred textures. He still refuses to eat anything wet to the touch and is extremely sensitive to people touching him outside of our immediate family. He has rhythmic self stimulatory pattern behaviors involving clapping and biting his own hands. If we ever have to step out of his routine in any fashion, it is misery for everyone around him. All of these behaviors are classic spectrum behaviors. Owen struggles with effectively communicating his wants and needs because of his speech deficit, yet cognitively he identifies and knows he can’t express what he wants. (Owen was also non-verbal until age three and his speech is still a huge work in progress.) Dr. Clark at CAPS diagnosed Owen with a spectrum disorder PDD-NOS (pervasive developmental disorder not otherwise specified), which qualifies Owen for ABA and respite care services.

Owen receives speech therapy, occupational therapy, physical therapy, and ABA therapy weekly. All of our therapists have been such blessings, but ABA has hands down been the biggest. After interviewing multiple ABA candidates, we ultimately went with Pastiche Partners out of Nashville, Tamar Robinson and Jane Barnes have been a God send. Our ABA therapists have done everything from grocery shopping with us, going out to eat with us as a family, and assisting Owen in both private and public school settings-there are no limits to the areas in which they will assist. All of these areas are the most problematic for our family. Owen was completely non-verbal until we has ABA. Essentially the ABA therapists’ facilitate the means and the knowledge on how to effectively address problem behaviors and how to address them with spectrum challenged children. (Inadvertently our typically developing 2 year old daughter Quin as well!) ABA has ultimately provided for Owen the function and benefits of speaking, and appropriate responses to non preferred places, people, and things. With the collaboration of our ABA therapist I confidently say that Owen’s problematic behaviors, social anxiety, and social inequities have improved 100 percent in comparison to that of a year ago. Instead of just winging it all the time we now have a game plan and know how to effectively “handle” our child, and if we are struggling with him, Tamar or Jane are just a phone call away.

Our biggest struggle at this point is really been receiving the appropriate services and placement options within the public school here in Clarksville. I cannot even begin to tell you the non-compliance regarding special needs children and the district here. (This subject is an entire different conversation.) The most effective and beneficial thing for Owen has been exposure. Exposure to those settings and situations that he struggles in most. We have him enrolled in the public school three days a week and then in private school two days a week. It has been vital that we expose Owen to typically developing peers in an attempt to bridge that gap regarding Owen‘s non-verbal issues and social inequities. We were able to do with the assistance of our ABA therapists and their willingness to assist Owen in this setting and with his bathroom needs. Every opportunity we have to consistently expose Owen to typically developing children in a controlled environment i.e. church, private school, and play dates, we do. Consistency and familiarity to these peers and environments have been vital in Owen’s developmental success.

It is definitely a struggle from day to day but our Owen has overcome some many battles and has done it with great ease. He is the sweetest, most compassionate, and loving little boy. My biggest advice is to just “find your child’s happy.” Owen’s happy is watching The Backyardigans or Yo Gabba Gabba, playing iPad, and being outside. He doesn’t really have an imagination and that is common with spectrum kids. Our normal isn’t everyone else’s normal, and that is ok. The best thing you can do for you as a parent and for a family with a spectrum child is, accept it. Accept that our lives our different, our children’s behaviors will be different, but just facilitate the means to curb our children’s inequities with the resources available. Owen is an awesome kid, I truly wouldn’t change him if I could. Matt and I just embrace his deficits and focus on his strengths, and reassure him it’s ok to be unique.”

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What does the Autism Spectrum look like?


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In an effort to raise awareness about Autism this month, I chose to focus on the actual SPECTRUM of Autism.  In my short journey so far, I’ve found that stereotypes control most of what our society perceives Autism to be.  Sometimes the stereotypes apply to a person, however, often times they do not.

When we gradually started sharing our daughter Kylie’s diagnosis, the number one response was: “but she doesn’t LOOK autistic”, followed by “but she doesn’t ACT autistic”, closely ranked before “but she doesn’t SEEM autistic”.  These responses became so common – even from close friends and family members – that I often found myself doubting the diagnosis and my gut instinct about my daughter all together.  The more I researched though, and the more assessments and evaluations we endured, I realized that people are not very educated about Autism at all.  Sadly, even professionals in the medical field that are designated to work with children with Autism are not always educated about the true spectrum of symptoms, and instead rely on their stereotypes of what society describes as Autism.

The reason so many people thought Kylie didn’t LOOK, ACT, or SEEM autistic, is because they didn’t know what children on all parts of the spectrum of Autism LOOK, ACT, and SEEM like.  They assumed they all LOOKED, ACTED, and SEEMED the same.  So, for Autism Awareness month this April, I hope to change the way people see Autism.  I will be sharing many different faces of Autism this month – varying ages, girls and boys, men and women, from different communities, at different places along the spectrum.  Their stories are all unique – their symptoms are not the same. Just like pieces to a puzzle that we are all still seeking to understand completely, together they are the Autism SPECTRUM.

Stay tuned for some beautiful faces of Autism this month, and if you would be interested (and willing) to open up and share your journey with us please contact me through my business webpage www.picturedmomentsbyapril.co or email me at mypicturedmoments at yahoo dot com.  Send me a synopsis of your story and a picture or two and I will respond with more information if we are able to feature your story.  If you’re a parent struggling to find what you want to say, here are some key points:  Introduce your child, what do they love, what do they excel at, what are their biggest challenges, and of course the typical road to Autism diagnosis type information. What were the flags, what are the symptoms, how did a diagnosis come about, what therapies have helped, what obstacles have they overcome, what does the future look like, and how this has affected the parents/family as well.  Hope that helps and thank you so much for volunteering to share your journey and help raise awareness of the diversity of the Autism Spectrum!

Don’t forget to follow @KYLIEISMS1 on Twitter too for some giggles and occasional information share 🙂

Autism Awareness

Featured Faces This Month: