Alisha, Melanie, and Tristan
Meet Alisha and her two children, Melanie and Tristan. She candidly speaks about her self reflective journey as a parent raising two children on the Autism spectrum, educational decisions, and the challenge she is giving the school system on taking care of our black children in the disability community. Disability Peer Support Specialist, Anastasia Ford, connected with Alisha and here is some of her story.
Before we get to the core of our conversation, I feel that your story is a story of pain and perseverance. By pain I mean having some tough days, and the relentless perseverance you have to get through it. Your life is one that a lot of parents can relate to in many ways. You are a one parent household, raising your two children, and making the best educational decisions for them. On your toughest parenting days, tell me the strength that keeps you moving.
My children keep me going. Although my parenting situation is not what they consider “normal”, I embrace it because I love them very much and they bring me a sense of purpose that I cannot really explain. To be completely honest, I went through some tough times before them and prayed for a fresh start and some love that I had been lacking. My daughter came along, then my son, 16 months later. There are smooth days and challenging days, but their unconditional love is what sustains me. Being raised in a single-parent home myself, I may have been conditioned or prepared for this journey in some sort of way. That strength my mom passed to me, the empowerment I feel from being a strong advocate for my children, and God’s grace get me out of bed armed and ready to conquer each day. There are some days where I want to cry, some days where I do, like a baby. There are some days where I don’t want to be a mom, I want to be ME, whoever she is. As parents we already wear so many hats; therapist, nurse, friend, working professional, advocate, and much more and tend to lose our identity as a person. I am still finding out who I am as a person again because I have lost myself in being a mom and placing myself on a backburner. There is nothing typical about my parenting situation, and many don’t understand that a break is foreign to me. I have friends that sometimes ask, “when will you be kid- free?” and it irritates me because I don’t have the support or opportunity to take a break. Plus, I don’t trust many with the care of my children. Some days I feel like I am doing it right, other days it feels like Autism has won. I have picky eaters; I must teach what they should know developmentally and help them understand how the world works. Sometimes it feels like 24 hours is simply not enough and the weeks feel like a revolving door. My self-care day is Sundays, but sometimes that depends on the flow of the week. The constant need to “stay strong for your kids” and self is a struggle sometimes. It feels like I am not allowed to release or break because I am always needed. The struggle with raising two children with Autism by myself while finding my identity aside from being a mother is quite a journey. Although it is a big challenge, I give myself a huge pat on the back because they are healthy and thriving because of me.
There is a saying that goes, "Once you've met one child with Autism, that's exactly who you've met. One." You have two amazing children on the spectrum (Melanie, 6 and Tristan, 5). There are many people that still believe everyone who is diagnosed with autism are identical in their development and personalities. What are Melanie's and Tristan's similarities and differences that creates the unique person they both are?
Melanie was officially diagnosed at age 3, but we began early intervention services around age 1-2. Tristan was diagnosed at age 2, a month shy of the Pandemic. They are totally different children. Melanie is a lot more inquisitive and calculating, has social anxiety, very emotional but expressive. She is very critical of herself; if she feels she is not doing something correctly, she will often get discouraged because she doesn’t want to disappoint anybody. She is very particular and neat. In her kitchen set, the canned goods must be a certain way on the shelf, she even wipes down the counter and the little table across from it.
Tristan is the opposite, at times. Tristan is very social, and often greets people with, “Hi, I’m Tristan, I am handsome”. He scripts a good bit and refers to himself in third person. He isn’t always expressive with his emotions; he is generally a happy child. He is in love with cars and must have them lined up a certain way. Tristan elopes a good bit— something tells him to explore. He is defiant more than often, but very intelligent.
It helps that they are close in age because they have a wonderful relationship and often teach one another. When one has a challenge, the other is very encouraging. Overall, Melanie is more reserved, but Tristan is more of a free spirit.
Initially, you had Melanie and Tristan in public school, then you decided to homeschool. Many black families homeschool, whether it is from the beginning or at a later time, and for various reasons. Why did you make the switch to homeschooling?
Initially, my decision to homeschool came from my spiritual journey. I believed that the tools and knowledge that we needed were not being taught in schools. My decision also came from a fear of the unknown during the Pandemic, and I had to prioritize their safety, especially since I am a single parent. My village is 2,500+ miles away in Seattle, although I do have a few long-time friends who have children on the spectrum as well. The other reason was because I was not fond of the education system in South Carolina. I felt like children with special needs were just placed in special education classes for their diagnosis, rather than the school systems tapping into their strengths and providing them the support they needed to thrive in general education classes. One thing I liked about the district in Seattle was that they had something called “integrated kindergarten” where children with special needs were placed in class with “generally developing” children with a teacher and paraeducator to help teach children inclusion. I was not sure that they would have anything remotely close to that here. Setting my children up for success and being their biggest advocate is something I take seriously.
Final thought. There is no right or wrong way for the path of education, whether it is home-based or public. In our recent chat, it is a possibility that you may place them in public school again. If so, believe me, there is no judgement. This can be a mental tug of war for some black families, especially for our black children with disabilities. From your personal perspective, tell me how the school board...and let's say the entire school system, can better support our black children of the disability community.
First, have educators that genuinely care and are trained to care for our children. Although empathy isn’t a skill that cannot be taught, having someone who has a passion for helping our children succeed is important. In addition to that, having more people who understand socioeconomics and Black families in our community would be beneficial to our children thriving in schools. Funding is a major issue in some predominately Black areas and districts need major reform. Our children are constantly being ruled out even at birth, and it is even harder for Black children with special needs. Some people are in denial or not accepting of diagnosis and may give up on caring for or helping our children become successful. Stereotypes have aided in the box that they place our children in; not all our children want to be basketball players or cosmetologists. Our children want to be pediatricians, engineers, biochemists, and other careers that change the world we live in. Our community as whole needs to partner with the education system to fight for this for every child, special needs or not. Overall, there needs to be more of a fight for our children’s future.
Interview conducted by Anastasia Ford, DPSS—Akoma Cares