I am really excited about today’s episode because I am speaking with Valerie Brooks who is the mother of three kids, and a caretaker for her daughter Jess, an adult who is blind and has autism. One of the reasons I am drawn to their story and their life is because it makes me so hopeful about what life might look like for Remy when she gets older. People like Val and her daughter Jessica help me to see how amazing life can be, even when it is really hard. Val shares all of her struggles with being a young mom, raising her daughter Jessica with all of her needs, how lonely it has been, and how amazing their life is now. I loved hearing their story and I know you will fall in love with them as I have.
How It All Began
Jess was Val’s first child. She had just turned 18 a few months before her daughter was born, so from the beginning, it was a stressful time of life.
She had a normal pregnancy and normal delivery. However, when Jess was around 4 or 5 months old, Val’s mom would say, “there isn’t something right about her eyes.”
Val listened to her mom and followed up on it, which led to a diagnosis of blindness. During the testing process, they also found out that Jess had a birth defect in the formation of her brain and she has hydrocephalus, which is a build-up of fluid in the brain.
What Happens Next?
Jess was a baby when everything happened, and it was much more difficult to find resources because there was no internet. They had several family members looking for connections and eventually, they found a group from Atlanta that was willing to do home visits for early intervention because of Jess’s blindness.
When it came time for her to go to school, public education did not have to provide preschool for students with disabilities. Eventually, a law was passed that stated the schools had to provide education for preschoolers with disabilities. They went to a school for the blind to get an evaluation, and while they were there, they overheard a director comparing Jessica to one of the students that were autistic. They looked into a pamphlet of resources that the director gave them on autism. Jess had so many of the signs and it started their journey to trying to get a diagnosis.
The Process of Getting a Diagnosis
They were unaware of how different Jess was. She’d been in therapy for so long, and their life was so different that Val didn’t recognize behaviors might be autism until she read them on a list. It was very eye-opening.
When they started trying to get the diagnosis, the professionals kept saying it was because she was blind.
They started trying to get a diagnosis when Jess was about to turn four. It took a year to get her assessment scheduled and done. However, when they got the results, they were denied an autism diagnosis. It was infuriating to not get the results. So, it put them in fight mode. It spurred them on to be stronger advocates.
“It’s very important to speak up about it and not just sit and be quiet. It’s very important for doctors and medical professionals to listen to your opinion on the direction things are going or can go. Almost demand for your opinion to be considered. You don’t always have to be right and get your way, but they need to hear your thoughts and feelings on the situation. Parents are the experts on their children.”
Val and her husband rejected the assessment and said, “we are going to get our own.” So, that’s what they did. They went two hours away and saw a Pediatric Neuropsychologist. From the beginning, the doctor thought Jessica was fascinating and had a lot of hope that they would be able to help her. He listened to everything they said, he observed her, and they left with the diagnosis that day.
How She Found Her Tribe
At that time and up until every moment she started blogging, Val didn’t know other people in the world were so similar to Jessica. No one they met was like her. Her entire life, they were under the impression that she was so especially unique that there wasn’t a guideline. When Val started social media and blogging, people would message her, and all of a sudden she was finding people living a similar life to the one she thought she was living all alone.
On Instagram, she felt like she found her people. She never had a big group of friends that could relate or understand. But now, she sees that there are hundreds of thousands of people who get it and they can lean on each other.
Raising a Special Needs Child as a Single Mom
Val was a stay-at-home mom until she got a divorce. Jessica was 20 and her other two children were teenagers. Because she had been a stay at home mom all that time, and she never went to college or got a job, life became really hard. She started college the same year she got a divorce and she went to nursing school.
She started working as a registered nurse while at the same time, she was trying to get Jessica situated. Val tried putting Jess in a school that accepted special needs students, but it was a disaster. The teachers and staff did not take good care of Jess and they were not treated well.
She finally made the difficult decision to stay home with her daughter and she found a job working from home and worked her way up from minimum wage and part-time hours.
How They Improved Communication Skills
They had Early Intervention with Jess since she was six or seven months old. From the very beginning, the therapists said to talk to her all the time. “Talk to her about what you see, what you do, and describe it all the time,” so they did.
Another thing that helped in the development of Jess’s speech was music. From a very early age, she started listening to music and it has been a part of her life every single day since. One of the first skills she learned independently was a play tape recorder and she learned how to play and rewind on that. It became her life.
- Speak up when something seems wrong. If a doctor or medical professional is saying something that you don’t agree with, it’s important that your voice is heard. No one knows your child as well as you do.
- It is so important to reach out to people and share your story. Val thought she was completely alone until she started blogging. Now she has a whole community of people that are there to support her in a way she never knew was possible before.
- Talk to your child. Use communication as much as possible on a daily basis. It is really important for them to hear as many words as possible in order to practice their own communication.
- Don’t be afraid to ask for help. It can be hard, and you may think that your child is your entire responsibility, but it is okay to ask for help sometimes to ease the load. If you have family that is supportive and in your life, they are probably more than willing to help out. Reach out. It may change your life.
- You are not alone. Val raised her daughter for many years without help and resources, while juggling a full time job, thinking she was alone. When she joined social media, she discovered so many people that helped her along her journey. It can be really really hard, but there are other people out there like you that can relate.