Wendy Andersen shares powerful lessons and tips she learned about redefining normal after her son was diagnosed with tuberous sclerosis and autism.
Wendy Andersen: Changing Expectations For A Happy Life
Wendy Andersen is an accomplished author, speaker, coach, and mentor. She is a wife and the mother to three amazing children. Having a special needs child has taught her the critical importance of setting up her world to fit the current expectations of her family over those delivered by the expectations of others.
For most of us, life does not go as planned. It certainly didn’t for Wendy and her husband when, in less than 36 hours, their seemingly normal life was turned upside down when their oldest son Dexter was diagnosed with tuberous sclerosis complex epilepsy and then four years later with autism. Her experience created a deep desire to redefine what normal looks like in her own life and instilled in her a passion to help others redefine normal for themselves. She is passionate about spreading her message and encouraging families to break free of external expectations and instead find the balance in life.
The Day Everything Changed
Wendy Andersen had a relatively normal life before her son Dexter’s diagnosis. She had been married to her husband for eight years before having Dexter. They loved being new parents.
Then one day when Dexter was six months old, everything changed. Wendy was working and her husband was in school when Wendy got a call from her mother-in-law telling her that she needed to come home right away. Something was wrong with Dexter.
Wendy got home and Dexter was napping, but when he woke up she saw exactly what her mother-in-law was talking about. Dexter’s head would bob up and down and his left arm would straighten. Wendy knew right away that he was having seizures.
Tuberous Sclerosis Diagnosis
Wendy called the pediatrician and they took Dexter to the office and were then sent onto the hospital. Within 36 hours, they had received a diagnosis. Dexter was having infantile spasms, a very debilitating type of seizure, as a result of tuberous sclerosis. Wendy and her husband didn’t even know what that meant.
Tuberous sclerosis is a very rare condition, with 1 in 6,000 children being diagnosed each year. Wendy says that she and her husband didn’t allow themselves time to mope about the diagnosis though. They went right into survival mode, trying to find any and all information about Dexter’s condition. The timing of his diagnosis couldn’t have been better. Two months prior, the FDA had approved a new drug that could treat his condition and stop the seizures in just one dose.
What is TSC?
Tuberous sclerosis, or TSC, is a condition that causes non-cancerous tumors to develop throughout the body. Dexter had these growths in his brain, which were causing the seizures. Dexter also has them in his heart, called rhabdomyomas. Fortunately, the ones in his heart were not causing problems. In fact, they grow as a child, then shrink and go away.
When Dexter was two and a half they discovered another type of tumor in his brain, called a sega. A sega will grow if it is not treated, so Wendy and her husband had two options: they could try a new medication and see if that would shrink the tumor, or they could have Dexter undergo brain surgery. If they didn’t remove all of the tumor during surgery, the sega would grow back and they would have to try the medication anyway. So they opted to try the medication first. Within six months, the tumor had shrunk by half.
Autism Diagnosis and Choosing to Stay Positive
Dexter continued to grow and Wendy started to notice some signs of autism, but he did not display all the common symptoms. He had some delays in his speech, despite being able to understand what was said to him. Wendy worked with him on sign language, and he was able to recognize all of the letters of the alphabet at a young age. He struggled with sensitivity to noise, a common symptom of autism, but he has great eye contact and loves to give hugs.
Eventually, Wendy did take him for an evaluation which led to his autism diagnosis. She learned that 50% of kids with tuberous sclerosis will be diagnosed with autism, but that many kids with tuberous sclerosis, like Dexter, don’t present as classically as others.
An Important Choice
Wendy and her husband felt they had a choice to make the day that Dexter was diagnosed with TSC. They recognized that they had a long road ahead of them. They were either going to take this diagnosis lying down and despair over what could have been, or they could rise up and do everything in their power to help him get the best help available.
There were still moments that they were sad and uncertain, not knowing what life would look like for them or their little boy. But they continued to choose to see the good.
Helpful Life Hacks
Tip #1 Gratitude Journal
Wendy started carrying around a gratitude journal. She has a reminder on her phone that goes off at 10, 2, and 6 to remind her to write down what she is grateful for. On the hard days, she has to really go back and think. This exercise has allowed Wendy to see all of the miracles they have witnessed, such as the availability of the medication they need, or the amazing doctors they have been able to work with in Cincinnati. Overall, Wendy feels that Dexter has taught them more than she could have ever imagined about life. Wendy’s family chose to rise, and now they are encouraging others to do so as well.
Tip #2 Love Life
Wendy thinks the best way to stay positive throughout struggles is that you have to learn to love your life. She explains that many people in support groups and online groups talk about the things they hate about what they’re going through. Wendy says the world could do without all the negative energy.
You only have one life to live. Living that life to the fullest starts with making the decision to love your life. We all have times where our life isn’t necessarily what we thought it would be. But the more love we pour out to our families and friends, the easier it will be. Wendy says we actually expend less energy by being positive too. We can always look for the greater good that can come out of a situation.
Tip #3 Embrace Your Life
As an extension of this, Wendy talks about teaching your kids to embrace their life too. There’s no reason to keep your family hidden in your home. We should embrace that this is our family, “This is who I am, this is who my kids are, and we are going to live our life unapologetically.”
Wendy remembers taking her son to the mall with her sister and her family. There was a lot going on with a merry-go-round and other toys and people running around. All of the sudden, Dexter was having a meltdown. Wendy lay down on the ground with him for a few minutes until he was able to get up and go on with his day. Wendy later shared this story with a friend and she asked what everyone else around her thought. This thought has never occurred to Wendy. She honestly didn’t know what others thought. It didn’t matter to her. What mattered was what her child needed. That’s what embracing your life looks like.
Tip #4 Redefine Normal
Another important part of loving your life is redefining what normal looks like. Wendy often asks people what a normal family is and it always gets quiet. We have created a concept of normal, but it doesn’t really exist. So redefine your normal to where your family fits that definition.
Wendy says normal for them is that their four year old takes pills three times a day, and that’s ok. It’s normal for her kid’s brother to go to the ER. It’s ok that another family doesn’t get it. Redefine your normal, embrace it, and love the heck out of it because this is who you are.
Tip #5 Breathe
Wendy says it’s crucial to remind yourself to breathe from time to time. You may not even notice that you haven’t been breathing for days, weeks, or even months on end. Taking a moment to step back and breathe allows you to take time to work on your mindset. Wendy calls it living in a powerful state, where your love, joy, and compassion live. Everything that you need is available to you.
Breathing helps us get away from our primal mindset or suffering state. It’s easy to fall down the rabbit hole and stay in that suffering state for a long time. We need to be able to recognize that we are in our suffering state. We have to take some time to feel our emotions and process them to be able to get back to our powerful state and feel better. This time isn’t just sitting in the locked bathroom for two minutes, it’s intentional time like taking a walk or drive or journaling. It’s taking purposeful time for yourself.
Tip #6 Find Experts
Wendy’s next tip is going and finding the experts on your child’s condition. Whatever resources you need, go and find. Sometimes it takes some time and lots of asking, but there will be someone out there to help. Really utilize the knowledge that you do find. Just start asking. Talk to the other moms you know. Talk to your child’s pediatrician or OT or PT. When you find what you need, run with it.
Tip #7 Know You Aren’t Alone
Wendy’s final tip is to know that you aren’t alone. It’s ok to reach out to people. Dexter’s condition is rare, but there happens to be six other families dealing with the same thing within a 30 mile radius of her family. So they all met up and had lunch. At the lunch, they realized that one of the kids on Dexter’s baseball team also has TSC. There are also great autism associations and support groups that host events.
Wendy says finding others makes it easier to get out of your house on the days you just want to stay home. Wendy has also created a nonprofit foundation for families like hers called Dexter’s Dream Foundation. Their foundation helps to provide experiences for families of special needs children. They provide free dinners and entertainment for these families to have a chance to come in and have fun in a judgement-free zone. There is a sensory-friendly movie night where the foundation rents out the movie theater and offer free admission to the families, and they just recently started a bowling league. Wendy says if you can’t find a support group close to home, make one. All it takes is a smile and hello.
Favorite Bible Verse
Wendy’s favorite Bible verse is 1 Corinthians 13:4-5, which says “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.” Wendy has learned to love in ways she never dreamed of due to have a child with special needs.
Wendy recommends the book Mind Hack, by David Bayer. Wendy is a facilitator coach of the Mind Hack program. A favorite book Wendy recommends is, “Mindset: The New Psychology of Success” by Carol Dweck, and resources from Mel Robbins.