Meet Wilder V.
The road has been hard but there is so much love and gratitude. It carries me through.
My name is Tabitha and I’d like to introduce you to my daughter, Wilder.
Wilder is a bright light full of energy, fun and love. Before her autism diagnosis at age 4, she was diagnosed with intractable epilepsy, global developmental and speech delays - all associated with a rare genetic mutation. Once her seizures were more controlled, doctors began considering autism, though it was suspected earlier on. Wilder has faced a lot of challenges in her young life, but she is resilient and so curious about the world.
Although her language is very limited, we don't consider Wilder to be nonverbal. Based on her most recent speech evaluation, she tests at approximately 20 to 24 months old. Most of her communication is in one to two word requests, repeating the last word of what she just heard or short phrases she has memorized from her favorite movies. Because communication is challenging, we rely heavily on reading her cues often expressed through stimming.
She generally avoids eye contact but is quite social in her own way, capturing people’s attention and inviting them into her world.
She loves music, princesses, watching princess movies, dancing and singing. As she grows older, though she may not notice herself, we find ourselves facing more adversity. This a huge motivation to educate others because autistic people and their families deserve space in this world too.
On this Mother’s Day and every day, I am so incredibly proud to be raising a beautiful and resilient girl to be herself, unapologetically. I’m thankful to Autism Speaks for allowing me to share my daughter’s story with their vast community. My advice to other moms and parents out there would be to surround yourself with people who respect and love you and your autistic loved one(s). Know you are enough, you deserve to be happy, and your family deserves their place in the world too. Live your life as fully as you can and embrace those beautiful moments because that is love.
Learn more about Wilder and her autism journey in this Q&A with her mom.
When Wilder was first officially diagnosed, what thoughts came to mind? What was your plan of action to find her the services she needed to reach her full potential?
Because Wilder was 4 years old and I already had a gut feeling that she was autistic as early as age 2, I wasn't too surprised. That doesn't mean I took it lightly, but I will admit I was partially relieved, as other medical and developmental concerns had begun before she was 2. Wilder was a happy, calm and observant baby. Language appeared to be progressing as expected but she didn't crawl until she was almost a year old, and she didn't walk until 17 months. Then, at almost 19 months, Wilder had her first seizure, a febrile seizure that lasted almost an hour. Everything changed after that event.
After many doctors, medications, multiple genetic tests, etc., she was eventually diagnosed with intractable epilepsy. At the point of her autism diagnosis, we had been through a lot and so had she. Though Wilder had already been attending a special education preschool classroom and speech, occupational and physical therapies, her autism diagnosis opened doors for more support like applied behavior analysis and other autism-focused programs. We have some form of therapy interventions scheduled every day of the week, and as long as she is happy and engaged, we do all the interventions that we can to help her.
We don't know what the future looks like for Wilder and I don't know what her full potential will be. In my personal low points, almost two years since her diagnosis, I still feel deep sadness and uncertainty. Wilder will likely always require a significant amount of support. Will the world love and embrace her as we do? Will others see and experience the heart-bursting joy and gratitude she has helped me find in the little things in life? As a parent, I feel more than I ever realized possible. It is a rollercoaster.
What was the extent of your autism knowledge before her diagnosis? How has that changed?
I knew that autism existed and I understood that there was a spectrum. At one point, we thought our son (he is two years older) may be autistic, so I started asking questions to our children's therapists and did online autism tests. When I started questioning whether Wilder was autistic, I began researching more online and watched the Temple Grandin film. I felt super frustrated though, realizing how wide the spectrum is. I felt like I couldn't find anyone to relate to because her case seemed so unique with her delays and other medical diagnoses.
What advice would you give to other moms out there who recently had a child diagnosed?
Be brave and never stop advocating. Be observant and don't hesitate to ask questions. Be mindful of where you get information and advice. If you are unsure, ask your doctors or therapists for guidance. We have come a long way, but things can change in an instant and because of that, I have to be ready. Parenting children with disabilities is exhausting, both emotionally and physically, so let people help when they offer. Take time for yourself when you can. I hate the phrase “be strong,” but I say it to myself all the time because I have no other choice.
What is the most rewarding part about being an autism mom?
For me, it's personal growth. I have not always carried myself with confidence - and it's still a work in progress - but raising a daughter with autism and other disabilities requires a voice and I am finding it. How can I teach her to be enough and to be herself if I don't believe it for myself? The road has been hard but there is so much love and gratitude. It carries me through.
What are some of the most challenging parts?
Not being able to understand Wilder's needs, discomforts and fears is incredibly frustrating. We only know and understand our own perceptions of things. If a person can communicate and comprehend language, then they can be talked through most difficult situations, like going into the dentist, a doctor's office or a lab. However for Wilder it takes time and often multiple visits to feel safe in a new space with a new person who wants to touch her with strange objects. The experience in an environment like this is traumatizing, no matter how much preparation I do beforehand (practice/play doctor kit, pictures of the place and doctor, practice with toothbrush and oral tools.
EVERYTHING is an experience. At 5 years old, I still put Wilder in a cart in a grocery store or she will run, and she will scream the high-pitched one that gets everyone's attention when I try to stop her. When we leave the house, our front yard and driveway is not fenced so I keep her in arm’s reach because she will bolt for the road. She will sneak out the dog door without shoes, a coat or any consideration of the weather. Safety is a constant concern for us.
The biggest thing that has been especially challenging for me lately is how unaccepting and mean people can be. I have been yelled at to control my child, I have seen people laugh, I have watched people turn away in disgust and we have been completely ignored for being different. As she gets older, it becomes more obvious that Wilder has disabilities, so to see your child being treated unfairly or in a discriminatory way is crushing and infuriating. I am not perfect, but I can tell you that I do my very best. These situations make me feel so angry, but I have made a conscious decision to stand up and take these opportunities to educate. No one deserves to be treated in these ways.
What is your relationship with Autism Speaks and how has the organization impacted your family's life?
I would say that it is a platform where I feel like I can find reliable information, it was where I found a parent packet that laid out a foundation for my understanding of autism. I also really love following the Autism Speaks IG page to see autistic individuals featured in such a positive way. The information posted is often relatable but also eye opening because everyone is so unique.