Most people meet NaVia and when they find out she’s a child with Autism they are confused. She is a child who is verbal, emotional, and speaks her mind. it’s not because she was misdiagnosed or because I have a secret ‘cure’ of Autism. It’s because she has had an empowering journey filled with amazing partners and has a mom who is a feminist. She is going to take this world on and leave it a better place.
How? I’m glad you asked. Here’s her story:
“Ms. Cooke, the team has concluded its assessments and observations and we have come to the conclusion that your daughter NaVia fits the criteria for our exceptional needs program as a child with Autism.”
At least that’s what I think they said. All I remember that late spring day in 2011 was “your daughter…Autism”.
How did I miss this? Me, a veteran educator, Master’s degree, National Board Certified, and more importantly currently a teacher of students with Autism? But I completely missed MY own daughter’s obvious place on the spectrum.
Let’s go back even further.
June 2007 I gave birth to a healthy and happy beautiful doll. Normal pregnancy and birth. She took her sweet time entering the world (sign of things to come, I believe), yet and still, it was the happiest moment of my life. Tied with the birth of her older sister.
2009-10 At two – an age when most kids are potty trained, starting to socialize, and communicate – my daughter was not. NaVia preferred staying to herself while sitting in a bathtub and talked gibberish. She only ate hot dogs and drank milk. At her birthday parties she did not want us to sing Happy Birthday out loud so we had to whisper it. I remember one incident where she sliced her hand opened after breaking my glass cupboard and only cried because she wanted to leave the ER. She watched the doctor’s clean her wound and sew in the stitches all while saying thank you to the doctors. I was near deliriousness with guilt and about to pass out from all the blood.
When visiting family and friends homes, NaVia went directly to a corner in a room where no one was. I used to be amused by this because some homes she’d never been in but she always seemed to find a quiet spot in a room alone. All she needed was her hot dogs and portable DVD player. Now it’s an IPod and tacos. Five nights a week. Tacos!
She had a quick temper and threw things ALL the time. It was so hard to understand why all these things were going on so, her father and I decided she needed to be around other kids her age. We knew she’d likely need some speech therapy but that was only the beginning.
At daycare, she wouldn’t eat the food. She hid under her desk. She wouldn’t leave the play area with the kitchen. One day her teacher sent home a note saying “I can’t work with other kids because she is so demanding and I don’t understand why.” The teacher even videotaped a meltdown and emailed it to me adding the subject: “See what I mean!”
But she was excelling academically. At the age of three she recognized secondary shapes like crescent moon and nonagon. She counted backwards and read on a level higher than her older sister. She was speaking Spanish to strangers she’d meet in Walmart. Her intellect surprised me, but few people were able to see what I saw.
Now back to this preschool teacher. No she didn’t! Wasn’t it her job to figure out why she was crying? NaVia was supposed to be counting and sorting objects but instead she was counting in patterns and backwards and even sorting into categories the teacher didn’t expect for a four-year-old.
Instead of celebrating this she attempted to send her back to her seat. My daughter refused to go and cried uncontrollably. Once I saw the video I immediately left to pick my child up and informed the director of the daycare she’d never see her again and she’d better hope I didn’t sue them for the ridiculous email.
That night I cried after putting NaVia to sleep and asked her for forgiveness. I felt horrible. I felt I was so naive and guilty for dropping the ball. How could I have not seen she needed me to stand up for her? Even if I didn’t know what was going on, as her mother I was supposed to be there for her and protect her. I was so busy advocating for and educating my students with Autism I just assumed my daughter was doing normal things. I resolved it in my head – saying this was just second born child behavior or after reading The Explosive Child by Ross Greene “she just needed help expressing herself”. Boy was I off. It wouldn’t happen again. I decided to do everything in my power to make sure she was in a comfortable and safe environment, especially when I wasn’t around to protect her.
Fast forward to 2012, after the diagnosis and making some serious changes NaVia began therapy and was placed in a specialized classroom to prepare her for school. Mrs. Lisa was her new teacher and like some of my students’ parents when initially meeting me, I hesitated. Who is this woman and how do I know she will take care of my baby 6.5 hours a day?
Well, the miracle had arrived! Once all of her therapies started to kick in and that mixed with an amazing teacher and supportive family members, NaVia began to flourish. She started to talk and communicate. She was starting to make friends and became willing to ride the bus to school and leave my side (honestly I think I had the bigger problem with the latter). Mrs. Lisa even got her to try different foods! She started to play sports, have play dates, and communicated with her older sister, neighborhood children, and classmates. We still had a long way to go with speech and social situations, but she was making progress. NaVia still didn’t like to go to places with lots of people and noise. She hated me even touching her hair, let alone washing it. But Mrs. Lisa and her teacher assistant Ms. Issa, had given me hope.
Her outside therapies have given me hope. She attends a camp in Pittsboro every summer to learn things just like other kids but at her pace. She plays baseball with teammates with special needs as well. This teaches her humility and it has fed her love of our local baseball team, the Durham Bulls. She’s ready for a team with nondisabled peers and rules of being stroke out. She is ready…because it was done at a pace she could handle.
Her social and emotional health is higher on my priority list then academics. I want her to be able to function in a society where there are so many disappointments. Some of them are an unfortunate part of life.
For example, when her father and I divorced she was heartbroken, but bounced right back. Others aren’t that easy because they are simply unnecessary and so hard to explain. Like, “Why did some bad people shoot up a church?” She didn’t understand and asked was it safe for us to continue to go to church. I want her to be brave and strong but also know it’s ok to cry and mourn when her heart hurts. Her social and emotional health are just as vital. I want her to have the courage to stand up and advocate for herself as well as for others one day. The best way I can teach her that is by example. She loves going to “teacher or mommy meetings and marches” with me. She picks out her favorite signs and talks about how “she loves seeing so many different people care about each other.”
Throughout every challenge one thing has never changed in this child. Her heart is incredibly generous. She loves everyone. Her teachers continue to be her favorite people in the world! She doesn’t like to see a person without what they need. She’s straightforward and to the point. From day one, I’ve learned so much more from her than she has from me. She’ll always have me to turn to. Even if I don’t understand what she’s dealing with, I will be her place of comfort and safety.
The blessing of raising this beautiful child as a single mom is not always easy. She and her sister always come first. I have had some ground shaking experiences financially and socially. I’m a teacher in one of the worst states for educator compensation so I can’t always afford therapy or a trip specifically for children with Autism. The saddest part is watching her tears fall.
Sometimes I can prevent it, sometimes I can’t. So of course I cry right along with her
So, what’s next? I have no idea. At her age, school starts to really get serious now. How will she respond? The possibility of her parents getting married to someone else is another event headed her way. Whatever it is, she’s got her momma. I will never again leave her future in the hands of others. Because the next time she cries, walking away is not an option. Standing up, speaking out, shouting, making phone calls to my senators and representatives to improve medical care for her, do something about gun safety, and provide funding for better schools is a part of my every day mom to do list now. Right beside make the tacos.