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”.
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!
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!