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 Jesse!


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Introducing Jesse

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I’d like you to meet Jesse. He’s an amazing six year old boy that has fought hard to be where he is today. At his 12 month appointment I told his pediatrician that I was concerned that he wasn’t even attempting to speak. I was told that he was a boy, he was an only child, and that he would talk when he was ready. The same thing happened at his 15 month appointment. At his 18 month check up, I was still concerned and also pointed out that his toenails were curved upwards. They looked like little cups. I was told that it was a normal part of development and to quit worrying. The doctor even waived his file at me and said “This is one of the healthiest kids we have in the practice! Quit worrying!”

Two weeks later, Jesse had a seizure while sitting in my lap on the living room floor. I called the doctor’s office and described what happened and was given an appointment with the first available pediatrician. We saw a doctor I had never seen before but he immediately agreed with the concerns I had about Jesse’s lack of speech. He ordered a full round of tests in order to find out what caused the seizure and put in a referral for speech therapy. Even at his speech evaluation, I was told there was no way he was autistic. Between 18 months and 2 years, Jesse declined developmentally. While there was some small progress made in speech and we had started using sign language to communicate, more and more behaviors were popping up that caused a concern. In September, my husband came from for R&R to celebrate Jesse’s 2nd birthday. While out to breakfast one day, we ordered Jesse a pancake and when I cut into it he had a total and complete meltdown.

At his next speech session, I told his therapist about the meltdown and showed her his toenails. They were curved upward because Jesse was toe walking. I remember her nodding and I knew it was time to push forward with getting the diagnosis.

It’s amazing how this all lined up for us. That doctor that I saw after Jesse’s seizure was a developmental pediatrician and an autism expert. Within two months we had completed the evaluations and been given the official diagnosis of “Infantile Autism“. I was told to immerse him in therapy and hope for the best but to be prepared for the worst. I ignored the part about being prepared for the worst and began to prepare for battle.

Jesse added ABA therapy, Occupational Therapy, Early Intervention, and also began a developmental preschool that included him in a class with typical peers. He quickly became the busiest two year old I have ever met.

I’ve had to learn to find my voice. Sitting back and letting things happen were no longer an option, I have a child that can’t advocate for himself so I had to learn how to do that. I’ve had to argue with therapists when I felt they were out of line, I’ve had to request meetings with principals and directors and wave laws around in front of them so they knew they couldn’t just let Jesse slide through the system. The picture I attached was included in a letter sent to Congress in a plea for them to include ABA therapy coverage for all military members. I have become an advocate for Jesse as well as the autism community in general and happily support others that are on this journey.

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Jesse is currently in a mainstream kindergarten classroom. He’s reading, writing, doing math, has a quick sense of humor and the greatest laugh I’ve ever heard. He loves everybody, especially babies, and happily hands out hugs – even if you don’t want one. We are still using ABA therapy, speech therapy, and occupational therapy and he’s now the busiest 6 year old I know.

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It’s important for you to know that he’s also the happiest 6 year old I know. He struggles with textures when it comes to food and clothing and he’s very sensitive to loud noises or crowded situations. He becomes over stimulated easily and doesn’t know how to properly bring himself back to center. He wants to be a friend to everybody and doesn’t understand when that feeling isn’t mutual. He wants to hug everybody he meets. He repeats scenes from his favorite shows at inappropriate times and he’ll talk forever about dinosaurs if you let him. He needs warnings when the situation he is in is about to change. He’ll learn quickly weather or not you really mean no if you say it so say what you mean and mean what you say. He claims to be allergic to homework and naps. As of right now, he wants to be a lion when he grows up – since he knows he is going to get “fur” and larger teeth, it just makes sense. He loves to run so much that they use it as a reward at school. When he finishes his math, he gets to run laps! He loves the beach, the sun, the sand — three years ago he wouldn’t touch sand, now he makes sand angels every chance he gets. He ate turkey on Thanksgiving for the first time last year, and yesterday on Easter he ate ham for the first time. His milestones might happen later than most, but they are happening and I know they will continue to do so.

But he’s happy.

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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 @ picturedmomentsbyapril dot com.  Thank you!