Life on the Spectrum: Journi & Jahan

Hey Y’all

I’m very excited to share my first Life on the Spectrum interview with you. Today we’ll be chatting with the Favrier Jones family.

Jahan Talis Fevrier Jones is a 20-year-old African American male of St. Lucian and Guyanese decent he enjoys all gaming systems and Apple technology. Listens to a variety of music and doesn’t enjoy reading.  Jahan’s favorite colors are Red or blue, he enjoys eating Pizza and wings. He loves skating and watching movies. Jahan currently attends private school and will graduate at 21! Next year he will start Project Search which will help him look for employment post-graduation.

Journi Temple Fevrier Jones is a 23 year old African American female of St. Lucian and Guyanese decent she spends the majority of her time reading, texting her friends and drawing. At this time her most favorite thing revolves around Hamilton (show and sound tract). Her favorite colors are green and pink, she enjoys eating pizza and pasta. Along with listening the Hamilton and texting activities include Big Fish games and puzzles. Journi education includes Public school; she started in CSEP and transitioned to Co-taught. Journi started community college in 2016 (average 2 classes a semester).

Myla is the mother of Journi and Jahan. Myla and I attended SUNY Purchase College in the mid 1990’s. Thanks to Facebook we have reconnected and I’ve digitally witnessed her raise her beautiful young people. Myla is currently attending post graduate school to obtain her Masters in ABA Therapy. Applied Behavior Analysis, also called behavioral engineering, is a scientific technique concerned with applying empirical approaches based upon the principles of respondent and operant conditioning to change behavior of social significance. Yes, she works with children with special needs and then comes home to tend to her amazing children. Myla was kind enough to take time out of her BUSY schedule to answer a few questions for me about her life and experiences as a parent living on the spectrum.

Deveter: Myla thank you so much for chatting with me today. How old was your first child when she was diagnosed with autism?

Myla: We knew Journi would require assistance because she was born at 22 weeks weighing 1lb 2.5 oz and she had a brain hemorrhage when she was in the NICU. So, the short answer would be immediately. She was receiving intervention as early as 2.5 years.

Deveter: I can’t imagine how emotional it must have been to give birth early. What about your son, when/why did you have him tested?

Myla: Our second was eventually tested at 4 because he started talking and functioning as atypical child but lost all his skills except walking at 1.5 years old. Being in denial (I saw the signs) I waited, I listened to his grandmothers (a teacher and a nurse) who told me boys developed later.

Deveter: Wow! As a parent the lesson here is to always listen to the signs and trust your instincts. What did you know about autism before your child was diagnosed?

Myla: Absolutely nothing

Deveter: Another wow. You knew nothing and now you are a pro! What type of Autism does your child have?

Myla: It’s a spectrum; some say high functioning, low functioning but I just view them has having different abilities. One is more sociable than the other but both are very quiet and keep to themselves. It hard to really explain but their personalities are the same but different volume levels.

Deveter: I knew the answer to that, hence the title of this series but figured some others wanted to know. As the parent of an autistic child(ren) what does a day in your life look like?

Myla: LOL – As much as I would like to say that I have it all together I don’t. So, each day is different with new accomplishments and struggles. My children are now young adults, Jahan just turned 20 and Journi will be 23 later in the year. Due to Covid, for the most part we are at home and attending school via zoom. However, there are days that we are out and about in the community. If we were back to our normal routine Jahan would be up by 6:30 am getting ready for school, eating breakfast and out the door by 7:30. He is in school until 2:30 and goes to after care until 6 pm. Journi is in college so her schedule varies based on her class schedules. On an average she is out of the house 3 days a week by 8 am to get to class by 10 am. For the most part she travels via Metro Access and RTA (handicap component of public transportation) after class she has lunch and goes to tutoring. She returns home via Metro Access and RTA and is at home by 4pm.
Monday, Wednesdays and Fridays were reserved for swimming, Thursday was skating night, Tuesdays was for bowling and movie releases. Jahan attends a day program on Saturday while Journi is finishing up some homework. Nothing is done on Sundays. We take turns cooking, depending on each child’s capabilities, If Journi cooks Jahan loads the dishwasher, vice versa. Everyone is responsible for their own laundry and their room. We take turns in the common areas.

Deveter: It sounds like you are setting them up for success! I need to get my kids to start cooking Sunday dinner!!!! What is the most ignorant thing someone has said about autism and how did you correct them?

Myla: “Your kids don’t look autistic.” When asked what do autistic children look like no one has yet to answer me. While some have thought it was a complement, I did not. It’s understandable that not everyone has come in contact with someone with autism but at times it just sounds so judgmental and ignorant. Especially, when they were younger and I would want to include them in “typical” events but required consideration due to their disability. Ex: early boarding on a plane, or skipping the line at an amusement park. Like seriously, who would lie about something like that. I started carrying their disability diagnosis with me to prevent my attitude from showing up and showing out. “She” did one time at Michael’s and it was NOT nice. LOL There was ALOT of bleeping going on in the checkout line.

Deveter: Listen!!! I don’t cuss but I might if I had to address someone making ignorant comments about my children! Your children are now young adults. What have you done or what are you doing to be an educational advocate for them?

Myla: The best way I have been able to advocate educationally for my children was to find a partner within the school system. Not all teachers are bad – My favorite teacher is my daughter’s 2nd grade teacher (still speak to this day) Mrs. Jacqueline S. Page. Whatever she was teaching in school I asked for copies so we could practice at home. Same thing for speech, occupational and motor therapies. If I could purchase something comparable I would and we would work on it at home. If not, I would ask if I could purchase the item and for the most part, I would be able to with their help. I would recommend that all parents with children in a special education setting read a series of books called Wright’s Law, remember that an IEP is a LEGAL binding document and too DOCUMENT EVERYTHING.

Deveter: That is invaluable information. Thank you for so willingly sharing! How can we support children and adults on the spectrum?

Myla: Be inclusive – many of these children have no friends outside of school and its usually limited to their immediate classmates. Learn a bit more by spending time with someone who has a disability. Be a sounding board to a parent of a child with a disability. At times many of these parents are single, with no consistent support and even if we wanted to tell someone how bad our day was they are in a similar situation and would feel guilty for adding to another’s burden.

Deveter: Inclusion is so important. I’m here if you EVER need a sounding board! What is one thing you want people to know about life with autism?

Myla: This shit is not for the weak. – Seriously, it takes a toll on you as a primary caregiver. You can lose yourself in trying to get your child(ren) together. As a single parent I feel guilty because I can only focus on one child at a time. That does not mean I am totally ignoring the other child, however, each academic semester I focus on one child and I can miss something that the other needs help with. When they were younger it was a similar situation in finding balance between their therapy sessions.

Deveter: I FELT that! Parenting isn’t easy in general but to parent children with special needs is a whole other thing. I salute you! What is your biggest dream for your children?

Myla: My biggest dream for my children is to be out on their own prior to my death (of old age). I don’t want my children to learn how to deal with living on their own and my death at the same time. Prior to Covid the plan was for them to move out at 25 and give it a try. That way (Lord willing) I will be around to help them navigate things. They have the option to return but I need them both to go out into the world and experience it a bit. Individually- I want Journi to pass her driving test (she has a permit) and focus on her art. I want Jahan to get a job doing something he enjoys.

Deveter: Myla I must say AGAIN that you are truly an inspiration. I’m confident that your children are going to be just fine! You are setting them up to be successful. I mean Journi is driving!

Reader I hope you enjoyed this little peek into the lives of Myla, Journi and Jahan. Stop by next week and learn more about Living on the Spectrum.

Until next time…

MUAH!