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…

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:

Flat Stanley visits Fort Campbell, Kentucky


Hello Mrs. Lewis!

This is Stanley reporting back to you from Fort Campbell, KY.  My friend Chloe sent me here to visit her cousin Kylie and I have had a great time!  Fort Campbell is a military base located on the state line dividing Kentucky and Tennessee, however, since the post office happens to be located on the Kentucky side of the base, Kentucky is the official “address”.

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The weather here right now is COLD!  There is snow on the ground for winter time, although flowers start peeking through the ground for spring very soon.  Summers are very HOT – sometimes over 100 degrees.  Fall is beautiful with colorful leaves falling from the trees and breezy, cool weather.

Being a military base, there are many different cultures.  Families move in and out of the area often too.  Kylie wanted to make sure I felt right at home while I was visiting, so she made me my very own Army uniform to wear!

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She took me to see a memorial on the Army post and we spent time checking out old military aircraft too.  She even let me “fly” an old helicopter!

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Next, she took me to meet some HEROES that live at Fort Campbell!  They were very nice soldiers that wanted to meet me and take a picture with me.  I made sure to thank them for volunteering to serve in the military and protect our country too.

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Kylie wanted to introduce me to a few of her own favorite people too.  We met the local Girl Scouts selling yummy cookies.  They wanted to meet me too!  We took a picture, donated to help wounded warriors, and I got to pose with a GIANT girlscout “cookie”.

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Last, but not least, Kylie gave me my very own “scout” patch for serving at Fort Campbell for the day!

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I had a wonderful time visiting with Chloe’s cousin, Kylie and I hope to come back soon!  Maybe next time, I could bring Chloe with me.  I know Kylie would love that the most.

Thank you for letting me explore Fort Campbell, Kentucky!

 

Mrs. Danielle and Kylie.


Kylie’s first teacher (for pre-K) was truly a blessing.  Mrs. Danielle consistently worked to help Kylie with the struggles she was up against.  She went above and beyond to make her feel special, and smart.  Kylie would come home and play school – dressed up as Mrs. Danielle with barbies, babies, and stuffed animals as students.  Kylie LOVED Mrs. Danielle.  When it came time to make her teacher a birthday present, we put together a homemade “book”.  Considering that Kylie’s main delay was motor skills (which involved writing/drawing) we knew that Mrs. Danielle would treasure the gift as much as we treasured her gift to Kylie – patience, persistence and love.  The pages were simple questions written by me about school or their class or favorites of Kylie’s.  I would write out Kylie’s answer, and then she would draw it.  One page read, “What does Mrs. Danielle look like?” and Kylie’s answer was “she’s so pretty and she’s gonna have a baby in her belly.”

I will admit that I was initially embarrassed because Mrs. Danielle was clearly NOT pregnant.  I even considered tearing that page out.  I remembered that she knew Kylie’s heart and would know how Kylie intended it.  Newborn babies are frequently little guests in our home, and Kylie absolutely LOVES babies.  Mrs. Danielle knew that I was a newborn baby photographer, so I was sure to bring that up again when we gave her the book for her birthday late last spring.  I wanted to be sure she remembered and wasn’t offended by Kylie’s drawing.

Shortly after, the school year ended and the summer flew by.  Kylie still talked about Mrs. Danielle often, and still played “school”.  Fall came around, and off to Kindergarten she went and this time to a different school.  She was one SAD little girl to not be in Mrs. Danielle’s class anymore, and not even at the same school!  I kept saying we would go visit “one day”, but the time never came around and one day turned into some day…

You can imagine my surprise recently when I received an email from Mrs. Danielle!  I thought to myself, I really need to take Kylie to see her soon!  I opened the message and after reading the greetings and how is Kylie, etc, I couldn’t believe my eyes.  Mrs. Danielle was contacting me to book a newborn session – she was expecting a boy and due in January!!!   I literally read the message multiple times – I couldn’t believe it.  Mrs. Danielle was just as surprised, and even had a mobile picture of the page from the book Kylie made her saved in her phone.  Apparently she had no idea she was pregnant before, no one did!  Well, except Kylie.

I was tickled pink (well, blue) for Mrs. Danielle and couldn’t wait to bring Kylie to SEE for herself what she hoped for Mrs. Danielle was true.  I told her I was taking her to see Mrs. Danielle and that there was a surprise.  We waited by the playground for the pre-K class to come out, and as soon as Mrs. Danielle came out the door Kylie saw her.  “She has a baby in her bellllllyyyyyyyyy!!!!!”  she screamed, and ran to her.

I’m so blessed to be able to witness little miracles like this every day<3

A vow to REMEMBER.


On 9-11, we take the time to REMEMBER. We honor the many heroes of that day, the lives lost, and the families forever changed. We also pray and honor the ones that do not remember. The military children who will never remember and may never understand why Daddy, Mommy or BOTH continue to fight and protect our freedom. Sometimes, the smallest of us carry the largest burdens. May we always REMEMBER and vow to help them understand one day. God bless our military “babies”♥

As a military family with a similar story, this blog post by Janine Bondrin really hit home for me too – it’s about our military children living 9-11 at home.  I hope we can all vow to REMEMBER, always.

The military inspired headbands were donated by Twinsanity Designs for pictures of our military children – THANK YOU!

You can find the adorable baby military caps at Kasey’s Creations, also donated for pictures of our military children.  THANK YOU!

 

Just a little shoe love…


 

I love shoes♥ One of My favorite indulgences is a new pair of sometimes frivolous shoes. Who’s with me?? While I’m not knocking that guilty pleasure of mine (or anyone else’s), there’s an elementary school in my area that has an extremely high percentage of children in need. The statistics were somewhere in the range of over 80% are in the “free lunch” program because of the challenging incomes of their families. My church Woodlawn Community Church is doing a shoe drive to help make a difference. Would you be willing to join me in sharing our love of shoes for these children that need a pair that fit?

Shoes & Belts for Byrns L. Darden Elementary School
Bring new or gently used shoes and belts to meet the needs of
Students K-5th grade. Also need sweatpants for K-2nd grade

(Belts are appreciated too because most of the children are wearing hand me downs, donated clothing, or parent’s clothing so they’re too big!)

You can bring your donations directly to my church

or drop them off at my house and I will bring them.
My address is:
1365 Mutual Drive
Clarksville, TN 37042
Please just drop them off by my front door any time, thank you!

 

Project 12 – Back To School! | Newborn Goodness Forum


The project for August on the Newborn Goodness Forum is Back To School.  Kylie started kindergarten this year and she was ecstatic!  I was very excited too – for both of us.  My excitement is partially because running a {more than} full time business and being a stay at home mom has been one heck of a sleepless juggling act this past year.  Kylie being an extrovert and extremely social has struggled with being an only child – she NEEDS the consistent social interaction with peers.  I’m eager to watch her flourish with new friends.

How has “Back To School” gone for you and your children?

Check out these other Project 12, Back to School posts from my Newborn Goodness friends and come join us!

Laura Brett Photography

Velse Photography

Heather McGinnis Photography

Project 12 – Back To School! | Newborn Goodness Forum


The project for August on the Newborn Goodness Forum is Back To School.  Kylie started kindergarten this year and she was ecstatic!  I was very excited too – for both of us.  My excitement is partially because running a {more than} full time business and being a stay at home mom has been one heck of a sleepless juggling act this past year.  Kylie being an extrovert and extremely social has struggled with being an only child – she NEEDS the consistent social interaction with peers.  I’m eager to watch her flourish with new friends.

How has “Back To School” gone for you and your children?

Check out these other Project 12, Back to School posts from my Newborn Goodness friends and come join us!

Laura Brett Photography

Velse Photography

Heather McGinnis Photography

Fleeting.


 

“They grow up so quickly”

We’ve all heard it at least once, right?  It’s definitely true!  Our children evolve daily. Those little changes here and there sneak up on us and suddenly out of nowhere we find ourselves questioning when this happened and where time went.  This is never more true than those first few weeks of life.  Often times after finishing a newborn gallery of images for a client, they comment on how much the baby has changed in those weeks.  It’s inevitable.

I wish I would have known the drastic changes a baby goes through that first year back when I had my daughter.  I wish newborn portraiture was as popular back then as it is now.  My very first professional portrait of Kylie was when she was 4 months old.  Although I am very glad that we had her photographed regardless, I’m just a little heartbroken that we never captured those first days, weeks, months…

If you have an opportunity to take advantage of newborn portraiture, please do it!  I understand that it may not be an option for everyone, and that’s ok.  But, if you have a choice or you’re on the fence – schedule a session!  Not necessarily with me, just schedule one in general!  It may not seem important while you’re reading this.  I promise that 5 years from now when your “newborn” is a beautiful spitfire of personality attending kindergarten, you will thank me.

I promise.