News and Knowledge

“Lucas is not getting along with others in the class room.” “We need to observe his behavior.” “Is everything okay at home?” These are words a mother does not want to hear.  Lucas was only in kindergarten when I heard those words. I had my own question for teachers, school specialists, and administrators: “What is wrong?”

As we found out more about Lucas, we discovered he had autism.  I also discovered what it takes to be the mother of a child with autism:

We have a mission.

From the moment we found out Lucas had autism, my role expanded. And expanded. And expanded. I became his voice, advocate, teacher, primary supporter, and cheerleader, speech therapist…I became everything Lucas needed. I learned not only to ask questions and speak up on his behalf, but also to listen. And I learned that Lucas needed patience from me, so I learned that too. That is what being the mother of a child with autism is like. You do what you need to do. If you don’t know how, you learn.

We are knowledgeable and we are smart. 

As the mother of a child diagnosed with autism, I read so much. I read almost everything on the Internet. I read books, articles, you name it. I am Lucas’ rock. Knowledge is power so I try to learn everything there is to know about autism. This is full-time commitment and dedication. Time is too important, and he is growing fast.

We are fierce.

We do not take no for an answer. We want more and will fight until we get what we feel is the best for our children. We are doing the right thing. We are protecting our child. The passion in our support is like none other. We share so many stories and bond so tightly with other mothers with children on the spectrum. We become family instantly.

We celebrate the small victories.

Every little thing that our children do as they move forward is so amazing. Lucas only eats certain foods. If they have the wrong texture, smell, or taste, he won’t touch them. Most of you reading this are familiar with this challenge. So now, imagine a kiwi, definitely not a typical fruit. The outside is hairy and the inside is green with a lot of seeds. Lucas ate a kiwi. He liked them! Small victory! I could not believe how happy I was. Lucas added a new fruit to foods he likes. Anyone who would have seen me would have thought I had just won the lottery. I hugged, yelled, and screamed with pure joy in my heart.

We are strong.

The inner strength that we develop is immeasurable. When you love your child and he or she is at risk, you become this amazing person for your child. I can only say, “What does not kill you makes you stronger.” It’s a bittersweet thing to say—it’s easy to get worn down emotionally and physically by the challenges of autism, from the moment you first hear the diagnosis through each time autism throws some sort of loop or twist into your family’s life. Your only choice is to gather your strength and meet the challenge. It’s what we do as mothers. It is our reality.

We have no boundaries, barriers, or limits when it comes to getting our children what they need.

You give it all you have. And then you give it just a little more. That’s when you have crossed that line. That is when you know you are different.  Because you have to be.

What we do comes from the heart.

We give from the depths of our hearts to make sure our children can greet others, start a conversation, make friends, be independent, taste different foods, and learn how to ignore those who stare or treat them differently. Our focus is almost always going to be drawn to matters relative to development and life skills as compared to mothers of typical children, who may be focused on grades, sports, extracurricular activities, or other interests.

We have a different perspective and a different goal.

From the moment the diagnosis of autism sinks in, our lifelong goal becomes making sure our children can be as independent as possible, feel comfortable in the community, and find ways to contribute to that community, learn to advocate for themselves, and be confident in who they are and what they can achieve.

Perhaps it’s not so much that our goals are all that different, but the route we have to take to reach those goals is on another kind of parenting map altogether.  And that’s okay. We can celebrate our journeys to our goals with the same pride that mothers of typical children do. In fact, given what we do every day, maybe we can even give ourselves an extra pat on the back. We have earned it!

Maria Veve lives with her family in Tampa, Fla. She and her husband, Alex, have four boys, Alexander, Joshua, Max, and Lucas. She has worked as a donation specialist for the LifeLink Tissue Bank for 26 years. She is also the president of the Association for Multicultural Affairs in Transplantation.