I met Jackie Moore when our kids were in school together. Her daughter Jordyn and Barrett were in the same class for four years. I affectionately dubbed them the prom king and queen, as they were the two who seemed to be the class ring leaders. Jordyn is a vivacious child who I often observed teasing Barrett in a playfully engaging manner (and he usually played hard to get). I loved the fact that Jordyn never let Barrett intimidate her. More often than not, she successfully lured Bear out of his shell. Also, I think Barrett secretly loved the attention.
I know where Jordyn gets her dynamic personality – from her superstar mom. Jackie is a ball of energy – she’s always got something going on. Whether it’s trying new things to help Jordyn or helping other families with children on the spectrum. In addition to being the class room-mom, driving Jordyn to all her extra-curricular activities, volunteering in the community and working for TACA – she gave birth to a baby boy six month ago. Hudson was born last October, and he is so adorable! This has not slowed the woman down one bit. I’m surprised that she even had time for this interview.
Please meet my friend Jackie More: Autism Mom, Special Needs Advocate & the National Chapters Director of TACA (Talk About Curing Autism).
When did you first suspect that something might be off with Jordyn’s development? She started regressing and losing skills at 18 months. By the time she was 24 months, she’d lost her words, her ability to point and other skills.
Can you tell me about the diagnosis? How did you go about it? Who gave the diagnosis? How old was she? At Jordyn’s 24 month checkup, her pediatrician noticed she wasn’t responding to her name well. She referred us for an auditory screening. Three days later we went back to the pediatrician to get the results, and she asked me some questions. I knew a little (very little) about autism from my former job as a school social worker. I realized that the questions the doctor was asking me were related to autism. I asked if she thought Jordyn had autism. My doctor replied that she wasn’t sure, but saw a few things that gave her reason to be concerned and we needed to monitor Jordyn. I completely lost it, sobbing hysterically and insisting that I wanted to see a professional immediately that could tell me. The doctor made a few calls and got us an appointment at the University of Missouri, where we received the official diagnosis. All of this happened in one week.
Where did you first turn, after the autism diagnosis? The doctor who diagnosed Jordyn recommended we start speech therapy and Applied Behavior Analysis (ABA) as soon as possible. She said the best chances for success were with 40 hours a week of ABA. We got on the waiting list and within 3 months began a home-based ABA program. When we received the autism diagnosis, my doctor told me about the gluten free, casein free diet (GFCF). Although she said she couldn’t professionally recommend it, she shared (off the record) that she’d seen many kids make significant improvement while on it. She urged us to consider it and see a nutritionist.
****Allie Note: ABA is a type of therapy that’s used with children on the spectrum, based on behavioral modification. You can read more about it here.
What kind of therapies did you do? We started Jordyn on a GFCF diet within a few days of receiving the diagnosis. The biggest difference we saw was that her chronic ear infection went away. She’d had the ear infection for 6 months and it wouldn’t heal, regardless of all the antibiotics we tried. The pediatrician was getting ready to refer us to a specialist, to get tubes in Jordyn’s ears, when we started the GFCF diet. The ear infection went away within 24 hours of our removing milk from Jordyn’s diet. The doctor was shocked! We also noticed that Jordyn’s eye contact improved. Then, within 3 months of the diagnosis, we started 40 hours a week of ABA therapy.
How old was Jordyn when she started school? Public or Private? We started Jordyn in a speech and language preschool at the University of Missouri when she was 3. She attended two mornings a week and continued ABA at home.
At what point did you realize that Jordyn may not be mainstreamed (I ask, because I honestly thought Barrett was going to make it to inclusion until just a few months before kindergarten). When we first received the diagnosis, I thought we’d continue with the treatments and therapies and she’d be mainstreamed by kindergarten. After 2 years of therapy, she still had very little speech. That’s when I realized that our dream was probably not going to become a reality.
Describe your public school experience? We enrolled Jordyn in public school at the age of 7 and our experience has been great. She started out in an autism classroom and we were so fortunate to have a wonderful teacher! After a few years, we switched schools and transitioned her into a MI/MO Classroom (Mild/Moderate Intellectually Disabled). This allowed Jordyn to have a more social environment, which she loves! Once again, we were fortunate to get a great teacher!!
Allie Note: Jordyn is very social – so bubbly and always smiling. Whenever I would enter the classroom, she was always the first to greet me. Then she’d drag Barrett over to me and tell him to say hi to his mom! Cue the infamous Barrett eye-roll.
Did you ever consider sending Jordyn to private school? Yes! At age 4 ½ Jordyn was still non-verbal and Ben and I began to panic. We wanted language more than anything! We found out about a school in North Carolina (we were living in Missouri at the time) that specialized in getting children with autism to talk. We made the decision that Jordyn and I would move to North Carolina for a year. Ben stayed in Missouri (because of his job) and flew back and forth to North Carolina every weekend. It was by far the most challenging year of my life. While we were living in North Carolina, Jordyn started having additional medical problems and panic attacks that would last for days. The attacks were virtually paralyzing to Jordyn. She was still non-verbal at the time and unable to express neither how she felt, nor understand why they were happening. Ben and I quickly realized that we couldn’t continue to live like that in long term…he in one city, Jordyn and I in another. Ben had the opportunity to transfer to Atlanta with his job, so we decided that would be the best decision for our entire family. There were many more options for Jordyn in Atlanta. Upon moving to Atlanta we enrolled Jordyn in a private ABA school for 3 years. It was a great school and she made a lot of progress. The only reason we switched to public school was because we were paying $30,000 a year for her school tuition. That certainly couldn’t work for us in the long term! J
Has Jordyn ever encountered any kind of bullying? Fortunately no. We’ve been very lucky to have a great support system for Jordyn that includes our family, friends and neighbors. She attends Daves Creek Elementary and they’ve done a great job educating the kids about Jordyn’s differences and how they can help her.
Is there anything you wish the schools did (or did better) to support kids with autism. I think continuing to educate “typical” kids is extremely important. I think it becomes difficult because each child with autism is so different. I believe schools need to strive to help children with autism be the best they can be.
Describe some of the extracurricular activities that Jordyn is involved in? Jordyn participates in a weekly special needs musical/drama class. She does Crossfit three times a week and loves it! It’s amazing to see the improvement she’s made in strength, motor planning, and endurance by doing Crossfit. She has music therapy once a week and loves it! She also loves to play outside, swim and watch Full House.
Allie Note: I’d actually pay serious money to see my Barrett do Crossfit!
In terms of autism issues, what are Jordyn’s strengths? Jordyn is extremely loving and social. She loves being out and about in the community, traveling and living life. It might seem like “what’s so special about that?” but it’s something that so many children with autism struggle with. I feel blessed that it’s simple things like that Jordyn is truly able to enjoy!
Her weaknesses? Speech, academics and overall global delay.
How are you feeling about the upcoming transition to middle school? Scared to death!!!
You now get paid to be an autism advocate (smart girlJ!). Tell us how you got involved in TACA and explain your position within the organization. I wanted to help Georgia families living with autism, so I started the TACA (Talk About Curing Autism) Georgia Chapter 7 years ago, as a volunteer. Each month, I held a parent support/informational meeting, along with occasional family events. A couple of years ago, I took a paid position with TACA as the National Chapters Director. I work with volunteers across the country who are running TACA Chapters that are similar to the one I started in Georgia. I’m also still a volunteer TACA Coordinator for the Georgia Chapter.
What advice would you have for moms who are just starting their autism journey? It’s a marathon, not a sprint! You can’t do everything all at once, no matter how badly you want to, so don’t beat yourself up over what you didn’t accomplish in a day. Instead, focus on what you and your child did accomplish and remember, “There is always tomorrow!” Enjoy every gain your child makes, regardless of how small it may seem to others.
Can you share an incident involving Jordyn and her autism that was just horrible when it happened, that you can honestly laugh at now? I wouldn’t call this horrible, but it was kind of funny. Several years ago, Jordyn’s teacher brought her out to the car after school and asked me, “What do you say when you stub your toe?” My mind instantly went to, oh my gosh, what did she say and how can I find a way to blame this on Ben!? The teacher explained that Jordyn stubbed her toe and instantly said “Oh sh*t! “ So like any good autism mother, I replied, “Well it is an appropriate and excellent use of her language.” The teacher and I both chuckled.
Give me a time when you knew Jordan had achieved a goal and you were bursting with pride. A couple of years ago we enrolled Jordyn in a camp called, Lose the Training Wheels. It’s a camp for children with special needs to learn to ride a bike. I went to the orientation meeting the night before the camp started and listened to them talk about the success they have with children. At the time Jordyn wasn’t even riding a bike with training wheels, let alone without training wheels! Yet they were claiming that in 5 days (only an hour and half a day), the majority of their kids learned to ride a regular bike. I always believe in Jordyn and her ability to accomplish new things, but this seemed a bit unrealistic to me. You can imagine my surprise and excitement when she was riding a brand new pink bike by Friday, all by herself. I still cry just thinking about it.
***Allie Note: I have Goosebumps and definitely need to look into this for Barrett. Post Script: Lose The Training Wheels is now know as iCan Shine.
Tell us about how Jordyn is doing today. Jordyn still has many struggles, but she’s a happy girl who loves life!! She was non-verbal until the age of 6, so hearing her say “I love you Mom,” before going to bed is a gift I thought I’d never receive. She struggles with Apraxia (speech clarity), but even at 13, she continues to make regular improvements with her speech. She finds joy in pretty much everything she does and I’m so grateful! She struggles with her academics, but in her eyes, school is all about the “social experience.” J Jordyn now has a 6 month old brother, and it has been amazing to see how well she’s adjusted to his arrival. She was an only child for 12 years, but the minute we brought Hudson home from the hospital, Jordyn embraced his presence in our home. The other day he was playing with some toys in his highchair and Jordyn walked up and started talking to him. When she was finished and started to walk away, she stopped and said, “High five Hudson.” She then took his hand and lifted it up, so she could give him a high five. She didn’t know I was watching. It was so cute to see!
Have you ever been involved in TACA, or attended one of their events? What kind of therapies have you tried with you child? Did you ever imagine an activity like Cross Fit for your special needs child? Is your special needs child able to rise a bike?