Pam and Chloe’s Interview (Episodes 31, 34, 35)
I am Ever-Changing Butterfly bringing to you “Living with an Invisible Learning Challenge” where we will discuss the challenges and triumphs of those with Nonverbal Learning Disability (NLD). In today’s podcast, I'll be interviewing Pam and Chloe. Pam is Chloe’s Mom. I’ll be asking Pam questions about how she helps Chloe with her NLD and ADHD. I’ll have Chloe comment on how she feels about her parents helping her and how that affects her life.
Please introduce yourself by giving us your first name and where you live?
My name is Pamela and I’m from Stone Mountain, Georgia. I have a teaching background. I’ve worked with special needs kids in various different settings.
My name is Jennifer. You know me as Ever Changing Butterfly. I have a background as a registered behavioral technician and have worked with special needs kids and adults at schools and homes.
How did you feel before Chloe got diagnosed with NLD and how does that compare to how you felt after she got diagnosed?
Pam and Chloe: Before Chloe was diagnosed, we felt frustrated and confused a lot. We didn’t understand why she didn’t seem to understand certain things or do some of the things on her age level. After she got diagnosed, things were clearer to us and it started to make sense to us why she was the way she was.
My response: I can definitely relate to that because I felt confused before I was diagnosed also. I didn’t know why I had so many challenges with math, writing, science when there was math in it, and social cues. Afterwards things were definitely clearer and it made more sense to me why those things are challenging to me. It also made sense to me why I thought I was different from everyone else in my family. I felt relieved after I was diagnosed because I had answers to all the questions that I had in life for me about my challenges. The changes we made were getting a better understanding of what NLD was by researching about it so my parents could support and help me with it. I got accommodations that made my academic life easier in college. Once I graduated from college, I read the book NLD from the Inside out and did more research on it so I could better understand why things were challenging for me. I feel like I can tackle any challenge I want to because I have overcome so many in my life which has made me a determined, strong woman that doesn't give up easily.
What do you think caused NLD and ADHD for Chloe?
Pam and Chloe: We think it has a lot to do with her prematurity. We saw signs of both NLD and ADHD from birth.
My response: My parents also saw signs of NLD or at least that there was something different with me when I was little. I started talking later than most kids, it was harder for me to hold a pencil, and I was a very quiet child.
What differences or challenges do you think she struggles with because of NLD and ADHD?
Pam and Chloe: With ADHD, she struggles with focusing on things that she finds boring. For a long time, she had issues with time management, but with the help of occupational therapy and psychotherapy, she has been doing a lot better managing her time. She also fixates on things which can be good and bad. It’s hard to pull her away from things that she really enjoys. With NLD, she has difficulty with visual spatial things; in particular she struggles with feeling her body in space.
My response: I also used to have issues with time management since I was homeschooled and we would travel when it wasn’t a school break. I had to learn to work ahead so I wouldn't be behind in school when we got back from our trips. This definitely helped me in college because I never procrastinated on my homework since I was used to knowing how long it would take me to do certain assignments. I also have challenges with feeling my body in space. When I’m moving something I find it helpful to look around myself so I’m aware of my surroundings that way I’m less likely to run into something or someone. I just started doing that this past two years and it really helped improve my visual spatial awareness. This was especially handy with driving because then I didn’t get into any more accidents and was more cautious. I only learned how to drive when I was 22 because when I was 17.5 I had gotten my permit but it expired before I had enough practice to get my license. So I had to get it again when I was 22 before going for my license because of it expiring when I was a minor. I don’t drive during COVID-19 since I work at my parents’ nonprofit. I can ride in with them to work, which helps save money on gas, car insurance and repairs.
Could you please provide some examples of how you and your husband help Chloe with some of her most difficult or challenging things that are related to NLD and ADHD?
Pam and Chloe: We are still learning and my family is a work in progress. With NLD, some of the things that we do for Chloe are things like, helping her walk across the street. We have to guide her and look out for her so she doesn’t misjudge her timing and get hit by a car. Sometimes I just ask her to hold onto my arm or I put my arm around her. We’ve also reiterated to her that it is imperative that she look both ways several times while she is crossing too. Sometimes it’s a mute point though because she still suffers from visual spatial issues.
We’ve also done puzzles together and we try and play games once a week to work on visual issues.
As far as the social skills aspect of the NLD, we’ve encouraged Chloe to reach out to extended family members and old friends to try and keep the lines of communication open and practice her social skills. She’s tried online social clubs and last fall she even did a live social skills class.
As far as the ADHD goes, we have to set goals and parameters for Chloe as far as school work goes. We help her set a schedule and we help her to ‘chunk’ out her work. She also has a set breakfast, lunch and dinner time to keep her on track. She also takes frequent breaks during the day while doing her schoolwork.
My response: My parents do help me in many ways with NLD. They help motivate me when I feel like it’s taking me a long time to overcome a challenge. They help me by letting me pause and ask what the person’s body language means when we’re watching TV. They help me by role playing conversations with them also to help me get better at social situations and cues. They also are helping with letting me know things like I do have empathy but need to be more discerning on my own. I’m getting better at reading their facial expressions and noticing when they need a hug or my help with something. I’m also working on being able to tell what my tone of voice is conveying to others. I’m paying attention to when it sounds too critical, or not the way I meant for it to sound.
When they were homeschooling me they would help me by teaching me how to memorize the multiplication tables and how to add things faster by grouping things by fives, tens, and fifteens. I came up with my own schedule of doing the hardest subjects first and the easiest ones last. This way I would have more energy for the harder ones in the beginning of the day. I did my schoolwork at my parents workplace so I learned how to block out all kinds of noises like copier machine sounds, people talking, phones ringing, and AC running. When I went to college I realized I couldn’t study in libraries because they were too quiet, that was my first experience of a traditional school setting.
What gifts do you think Chole has from NLD and ADHD?
Pam and Chloe: The main gifts that Chloe has from ADHD are the many different interests that she has in a lot of areas. She likes everything. But that’s also why it’s so hard for her to focus on just one thing. With NLD she is very good at anything verbal, like reading, writing and her extreme knowledge of vocabulary words.
My Response: I’ve mentioned my gifts before but just in case you’re a new listener I’ll name a few of them: love of learning new things, love of challenging myself, good at remembering people’s names, birthdays, numbers, celebratory dates, family stories, strong auditory and kinesthetic, verbal memory.
Is there something you wish the world knew more about NLD?
Pam and Chloe: I wish that people (including myself at times😊) recognized that NLD is not the same as ADHD. Although a child may have both disabilities at the same time, and although both disabilities may have similarities, they are two separate disabilities, and they have to be treated differently. If a child with ADHD gets treated for a behavior issue at school, that doesn’t mean that that same correction should apply to another child with NLD (especially if that particular child doesn’t also have ADHD or if the ADHD behavior isn’t presenting at the time).
Also, just because a child has been diagnosed with NLD, it’s not the end of the world. It’s actually the beginning of discovering the world of NLD and how that child fits into their new world. The diagnosis provides an opportunity to learn more about their disorder and how it can give the parents and the child tools to help them overcome their challenges.
My response: I agree with you that I wish people would know that NLD is different from ADHD,Asperger, and Autism. Also wish the world would know more about what it was and I think that would be solved by having the researchers, psychologists and scientists talking to people who have it. Or people who know people that have it like their family members and friends. I agree with you it’s not the end of the world when you’re diagnosed with NLD. It does make your life more challenging but it also gives you gifts that you wouldn’t have if you didn’t have it. For instance you can notice things that overlook the ladybug details instead of seeing the big picture. Sometimes we miss the big picture completely but not always yet we can learn and train ourselves to see it.
Do you ever wish she didn’t have NLD or ADHD?
Pam and Chloe: I really don’t have any regrets. My daughter is just how God made her. If she didn’t have her disability, then she wouldn’t be who she is. She might not have the terrific vocabulary and writing skills that she has if she didn’t have NLD. And she might not have all of the interests that she has if she didn’t have ADHD.
My response: I agree with you if I didn’t have NLD I wouldn’t be who I am. I wouldn’t be able to memorize song lyrics, lines from movies, people’s names or birthdays really well. I also wouldn’t have the strong auditory, kinesthetic and verbal memory that I have. I also wouldn’t be able remember all of the great family trips or stories that I can.
Do you ever feel like NLD or ADHD is a burden?
Pam and Chloe: Sometimes it can get pretty stressful and feel like a burden. Sometimes I have to remind myself that she doesn’t have a disability, she just has different abilities and that’s true for every human being.
My response: I would agree with you that it can feel like a burden when I’m working on three different areas of challenges: social, work, and personal and have to juggle all the balls at once. If one ball falls then it feels harder to balance them. Also feels like there are never ending tunnel challenges to tackle with no light at the end. But I have learned that I like to tackle challenges because it tests myself and that I don’t give up easily.
What would you tell others who NLD as motivation for when they get discouraged?
Pam and Chloe: You have to take one day at a time. I tell people all the time that ‘this too shall pass’. If you fall down, you have to get back up and keep going. Tomorrow is a new day. Keep your faith and stay positive. I pray a lot too😊
My response: I agree with you and have used that phrase on myself. It will take one day at time. Tomorrow is a new day for you to keep trying at those things that are challenging. You’re right you can keep faith and stay positive about overcoming the challenges or struggles. I do pray too.
What would you tell people who don’t know they NLD but suspect they might?
Pam and Chloe: I would tell parents, and even kids who have to self-advocate like my daughter did, to get tested as soon as possible. The sooner the better. It is worth any sacrifice that you might have to make, and you never know, insurance may pay for more than what you might think it will. The sooner you have a diagnosis, the sooner you can begin to treat the disorder and move on with your lives.
My response: It is better to get tested sooner because you can get the help you need sooner. It’s also better to get a diagnosis sooner because it can help you get accommodations sooner for your academic life. It will help you with making it easier for you and your family so you both have answers to the questions that you always had.
When did you first suspect that Chloe had ADHD/NLD?
Pam and Chloe: We first suspected that she had ADHD in kindergarten, but we didn’t get her tested. One of the reasons was because she was already in a small private school setting and we didn’t feel the need to get her medicated like the school had suggested. Instead we asked the school to make small accommodations (like in different testing situations) and allowances for her. Then, after first grade, we homeschooled her.
We never suspected NLD, because we didn’t even know what that was at the time. We were aware that she had visual spatial issues and social and emotional issues due to her visual issues, but it wasn’t until she got tested, right before the age of 17 that we learned of the NLD disorder.
My response: I would say my parents suspected there was something different about me when I started talking and reading later, needed longer and bigger pencils to write with. Or that I was really quiet when I wanted something and would say “I love you” repeatedly because I didn’t know how to ask for what I wanted. I had my burning hunch that I was different and became aware of it in high school. But they didn’t know what it was for certain until I got diagnosed at age 19 with NLD.
Whether it’s parents trying to help their children with ADHD and/or NLD, keep motivating them to overcome their challenges or reminds ourselves that our child who has NLD and ADHD are similar to other humans who have specific needs I and other who have learning challenges still need to improve in the areas today.
As I wrap today I would like to share a few things with you. I have recently created a website, Facebook and Instagram account for my podcast. The name of the website is www.livingwithnld.com. I would love to know what is the most difficult thing you encountered when trying to help your child with NLD or another learning challenge they have? If you're listening on Spotify or somewhere else please shoot me an email at livingwithnld@gmail.com. If you’re listening on livingwithnld.com please leave a comment below the episode.
Here is an app that you may find helpful for you: the Khan Academy can help you get better at different kinds of math including statistics, algebra, calculus, and geometry. It can also help you study for the SATs and ACTs. Not sure if you’re a new listener or not but I’ve recently learned about a non-profit that I would really like to help. It’s the NVLD Project. In addition to doing research on NLD and working to get it back on the Diagnostic and Statistical Manual of Mental Disorders (i.e. DSM), they provide support groups for those with NLD. You can find the NVLD Project at www.nvld.org. This is where I often turn for real-life stories I use in these podcasts. All proceeds will go towards the NVLD Project. I would like you to practice journaling about your gifts and differences. Also, see if there is a way that you can make that difference become easier for you to do than it was.
In conclusion, I would like to hear from you please let me know if you know anyone with NLD that I could interview for this podcast. What are you interested in learning about NLD? I know not an expert. But I do know I have the living experience of having it. Thank you for listening and I hope you enjoyed learning some new things today.
