Green Country Grown-Up: Andee Cooper

Every good parent deserves an award, but in this case, Andee Cooper was actually presented with one! Cooper was recognized by Tulsa Advocacy Resource Center (TARC) as the Parent Advocate of the Year. TARC is a non-profit organization that provides services and programs for children and adults with developmental disabilities.

Andee Cooper with her son Kannon

Cooper is the mother of Kannon, an energetic 11-year-old boy who also has a rare form of epilepsy, Lennox Gastaut Syndrome. This form of epilepsy is not well-managed with medication and causes significant cognitive regression. She understands, first-hand, the struggles of raising a child with this diagnosis. As she will admit, it has not been easy – especially during the recent “Shelter in Place” order resulting from the coronaviris pandemic — but Cooper remains positive and continues to find strength through her son.

TK: Tell us about yourself.  

Cooper: I grew up in Bristow, OK, and played tennis in college. Shortly after graduating, I went back to school and was working as a physical therapist assistant in a public school system. I was serving children with special needs and quickly recognized they had no voice and, oftentimes, their parents didn’t either. My love for serving others with a magnitude of needs developed long before Kannon.

Now, beyond parenting and advocating for Kannon, I also work full-time for CAP Tulsa. My role as Special Services Senior Team Lead has been the most fulfilling professional work I’ve done to date. I am blessed to work with some of Tulsa County’s most vulnerable children and families. Many times these families come to me with a child already diagnosed with a disability, but oftentimes, these families are unaware their child has a suspected delay or disability. I have the privilege of helping these parents navigate the IEP process, state and local resources, as well as providing intervention strategies and support to our CAP Tulsa teachers serving these children.

TK: How did you discover your child had epilepsy?  

Cooper: After three-and-a-half-years of completely typical development, Kannon had his first seizure in my parents’ front yard. It didn’t look like the big, scary seizure we all think of from movies. It was more of a long-lasting blank stare that I couldn’t shake him out of. It terrified me. We were seen by a local neurologist and, shortly after, diagnosed with early onset childhood epilepsy, something we were told was “no big deal,” and he’d grow out of it by the age of 10.

After a year of unrelenting seizures, multiple failed medications, loss of words, skills and hope for any break in seizure frequency, duration or severity, we sought after a second opinion. A second opinion turned into a referral to the Mayo Clinic in MN. After a 10-day stay and extensive testing, Kannon was diagnosed with Lennox Gastaut Syndrome.

TK: How did you perceive others reacting to his seizures? 

Cooper: In the beginning everyone was terrified of his seizures, me included. Some people closest to me are still very hesitant to be alone with Kannon because of the likelihood of him having a seizure in their care. The hard part now is that because Kannon has cognitively regressed so significantly, on a good, low-seizure day, he functions similar to an 18-month-old, but looks very much like a Division I athlete. He stands 5’7” and 140 lbs. of pure muscle. He is biracial, with great hair and a perfect complexion. Unless you tried to engage him in conversation, you wouldn’t recognize his otherwise invisible disability.

TK: Why was it important for you to write a children’s book that addressed this condition? 

Cooper: It was important to me to write a book addressing how other students could help Kannon and why it’s ok not to be scared. Early on for my niece and nephews, we started calling Kannon’s seizures the “wiggles” to take away such a heavy stigma associated with them. Kids are resilient and want to be helpers by nature, and very quickly Kannon’s seizures became second nature to his cousins, and they’d yell out to an adult “Kannon is getting the wiggles!!”

911 was called frequently by daycare providers and the school district because of the severity of Kannon’s seizures, and kids would always ask what happened and why and how they could help. I wanted to answer all their questions but not in those moments. That is how “Sometimes I Get the Wiggles” came about. Now that it’s been published, it has given me the opportunity to advocate for other children with epilepsy as well, and I am going into the school districts doing disability simulations and teaching grade schoolers what it’s like to have a disability. The most important thing I can teach Kannon’s peers during the simulation is that under the roof of the school, everyone is a Jenks Trojan, and we all want to be treated with respect and dignity.

TK: How did you find TARC as a community resource? 

Cooper: I actually used to work for TARC years ago. I knew I wanted to be involved in advocacy long before Kannon, but didn’t know to what degree or how I’d become involved after my time at TARC.

TK: How has TARC helped you?  

Cooper: Sherilyn Walton at TARC has become my professional mentor and has truly taught me how to advocate for Kannon with a great deal of grace. Even though I feel confident in his IEP meetings now, the power of having someone alongside you in these meetings is incredibly impactful, especially as a single mom or a parent of a newly diagnosed child. I’d recommend reaching out to Sherilyn because this is a very difficult road to navigate alone.

TK: What did you think when you were presented with the Parent Advocate of the Year Award?  

Cooper: The award was a welcomed surprise. It’s nice to know our story, struggles and triumphs have been heard. Truly, Momming is a really tough job. I always compare what I do for Kannon to the mom that shuffles four kids to four different soccer practices, a doctor’s visit, piano lessons and sleepovers. That all sounds really overwhelming, too. They deserve awards as well. As long as moms support other moms, we will continue to thrive personally and professionally as well.

TK: What message would you like to give other parents who struggle being an advocate for their children?  

Cooper: Raising a child with a disability can be the most heartbreaking thing in the world. No one gets pregnant thinking, “Oh my gosh, I can’t wait to raise a child with significant needs.” …. or at least I didn’t. Take the time to grieve the loss of the dreams you had for your child and their future. Because Kannon was typically developing, this is something I continue to struggle with. I always thought he’d grow up playing sports with his cousins, building forts and chasing girls. My hopes for Kannon now are much simpler.

Once you have accepted the diagnosis of your child, then you can become their best voice. If you don’t, you won’t find many who will. Connect with moms of children with similar diagnosis. Then, go out and find your people! Build a strong village around your child and help them shine for the great little human they were meant to be.

Lastly, don’t compare. If comparison in life is generally very difficult for you, take a break from social media. Seeing what typical peers are accomplishing or involved in can often overwhelm a parent who has a child with different needs. If you’ve ever read the poem “Welcome to Holland,” you’ll know you can’t really compare the beauty of Italy and Holland; they are both breathtaking.

TK: Prior to the quarantine, what did you and Kannon like to do in your free time? 

Cooper: Kannon loves to be outside with his dog and best pal, Murphy. He loves to go to the dog park, to throw rocks in the river, and most any outdoor sport you can bet he will want to join in. Kannon truly has the sweetest nature and his favorite phrase right now is “aww good hug.” Even if he hasn’t hugged you, it’s his way of showing affection. He keeps me on my toes all hours of the day and would spend every waking moment near the water with his dog if he could. We take several road trips all over the state for new bodies of water to make big splashes.

TK: Right before publication, Tulsa was given the “Shelter in Place” order. What has this order changed for you? How are you handling it?   

Cooper: Life has taken a huge, unexpected turn for Kannon. Thankfully, we have had a couple of weeks to adjust to our new normal and we are making it work. However, the thing that makes quarantining with Kannon pretty unique from other children is that he doesn’t enjoy YouTube or sitting in front of the TV for hours on end. So, the term “using a TV as a babysitter” is completely foreign to me. During these days, I wish he would enjoy sitting just for an hour even. I also can’t explain this to Kannon, as his cognitive ability to understand a pandemic or being quarantined are very limited, much like an 18-month-old.

Kannon is an incredibly active kid and wants to be on the move in his yard or out at other bodies of water in the community. With the new Shelter in Place order, I have limited leaving the house even for those outings. The hardship for me has been juggling his daily seizure activity, his very high energy level and working from home. This is not a sustainable work environment.

Since spring break, Kannon has had dozens of seizures, oftentimes causing me to jump up from Zoom meetings to care for injuries or provide rescue meds. The new normal is something we will adjust to because I find my strength in him. He is my constant reminder that I can only focus on what I can control.  I can’t control this pandemic, but we can do our part by staying home and this eases my worry for Kannon’s health.

TK: What else would you like to mention?

Cooper: In this time, I’d encourage others, if you know a child or an adult with a disability, be neighborly to them. Check in to see how they are doing. For my son, it’d light up his world for someone to simply call and sing Wheels on the Bus. For me, simply the conversation, as I have no real meaningful conversations at home during this time since Kan is not communicative. Kannon is such a bright light and spreads so much joy, I just can’t wait for that to be shared again in our community and to our family and friends.

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Resources: To purchase the book, Sometimes I get the Wiggles, visit www.andeecooper.com. To find out more about Tulsa’s Advocacy Resource Center TARC, visit: www.ddadvocacy.net