Before Annabelle was born, I felt something was “off”. When I was pregnant and she would kick, if others would try to feel her or the kicking she would move away. Somersault away. While in labor, she gave the nurses a run for their money as they tried to readjust the belly monitor due to her constant moving. Shortly after Annabelle was born, I came to a conclusion. Either I was the worst mother in the world, or something was off with my child. She would cry non-stop. My former pediatrician dismissed it as colic or GERD, however; the crying continued on. Sleep was also unusual. She wasn’t sleeping, hardly ever. I thought newborns were supposed to sleep often and wake frequently to eat.
When Annabelle was 4 months old I noticed she wasn’t hitting her gross motor skills. A nurse practitioner suggested we consult with birth-to-3 to have her evaluated. With my new pediatrician’s approval, we enrolled into birth-to-3 for physical therapy when she was 6 months old. Little did I know, this would be the beginning of our non-stop therapy schedule. She progressed physically with birth-to-3, eventually walking at 14 months, but speech delays became evident. We eventually had Annabelle tested for autism when she was 22 months old. We were told it looked like “just a speech delay.” Hearing Annabelle would be ok, we decided to expand our family. Annabelle continued not be non-verbal and have delays.
After months of ongoing concerns with Annabelle we decided to get a second opinion when she was 2 1/2. It’s Martin Luther King Day 2012, I am holding Annabelle’s newborn sister and sitting in another pediatric neuropsychiatrist’s office. This time, the results were different, “Annabelle has moderate autism, she needs intensive ABA therapy right away, but your commercial insurance probably won’t cover it, so you have to sit on a wait list for 2 years. She is going to need ongoing services and specialized therapy”. This time, the diagnosis was real.
While waiting on the statewide ABA wait list, we enrolled Annabelle in every service possible. This included private speech, private occupational therapy, a group speech/OT class, and she remained in the birth-to-3 program. Once Annabelle turned 3 we enrolled her in our school district’s early childhood program. School then provided speech, OT, and PT. We finally began ABA in summer 2013 when Annabelle was 4. With ABA we started with the smallest tasks, such as sitting still for just 3 seconds. She did intensive ABA for 35 hours a week for 3 years, plus school and OT. It was a full-time job for such a little girl.
Today Annabelle is in the 1st grade. She has a modified (shortened) school day. Her school is amazing. We are so proud of how far she has come! She is sitting with her peers, coloring, cutting, gluing, listening, and participating with her class. At school she also receives speech therapy, occupational therapy, special education and specialized gym. Annabelle has a wonderful 1st grade teacher and special education teacher. She also has a speech therapist, occupational therapist and several aides that help her and stay by her side. She enjoys her classmates and they enjoy her. Her class has learned how to exchange PECS with her. She has even made a best friend! She sits in the regular lunch room and participates in recess with her peers. Fortunately our school is very inclusive and collaborative with us. School has been such a positive experience for her and we are incredibly thankful for this.
Annabelle is also in ongoing ABA which consists of 20 hours per week. Therapists are continuously coming in and out of our house, 6-7 days a week, and most holidays. Some of them feel like part of our family. The ABA program requires a certain percentage of parental involvement as well, so my husband and I are participating in some sessions and parent training. Annabelle is still considered non-verbal as she has some words, but not many. She communicates with PEC’s (a picture exchange system). The goal is always to develop communication verbally, but to give her other means to communicate if regular verbal speech doesn’t develop.
Our biggest current challenge is communication. With Annabelle being non-verbal I can see how she gets extremely frustrated with not being able to tell us what is wrong or what she needs. When she is really frustrated, she may try to hurt herself with self-injurious behavior. She continues to make strides with PECS, but still has a long way to go. As she grows more proficient with PECS we will be exploring the option of teaching Annabelle how to use an augmentative and alternative communication (AAC) application where her PECS are on an iPad and when she touches them a voice is created.
Annabelle amazes us daily. She continues to learn new tasks, try new things and participate in activities she would never try before. This week we celebrated her attending first field trip with her class. We get excited when she tries new foods. We all called and texted each other with excitement when she started eating peanut butter. You learn to celebrate any achievement. Her love for nature is unmatchable. When she stops to stare at the trees blowing in the wind it makes me stop too. She will like to stand in the driveway to feel the rain on her face. She loves Mickey Mouse Clubhouse, her iPad, french fries, chips, bottle caps candy and long car rides. Occasionally we hear a clear word and it’s music to our ears. Her latest word is “eeeeeeeating” when she’s hungry or eating. It’s so exciting to hear!
As parents we hold hope that Annabelle will continue to grow, develop, learn how to communicate and just be happy. As a parent you do the best you can. You listen to the doctors, teachers, therapists and experts, take their recommendations, collaborate, try new programs and therapies. But in the end you know your child best. If things don’t work out, you readjust. I’ve learned to take things one day at a time, sometimes one hour at a time and occasionally sometimes one minute at a time.
Angela, mother of Annabelle