Faces of the Autism Spectrum: Meet Bekkah

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Meet Bekkah


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.

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!

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.


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:

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