Mama

Facebook Memories can be wonderful, but it can also break your heart. It’s one of the features that leads me to keep my account there, though, because I love being reminded of funny things my kids did or said, or precious memories with family members and friends who are now gone.

Today’s Facebook Memories posts definitely had one that brought a huge grin to my face, and a tear to my eye. I still remember this day like it was yesterday, and how excited we all were:

Facebook Memories: Sawyer Said Mama

 

I was sitting on the couch in our living room at Fort Campbell, KY, drinking my coffee. Sawyer’s therapists had explained to me that it was easier to get his focus and cooperation if I stayed close but out of the room while he did therapy, which I was happy to do. I would always listen, and that day I remember how precious his little voice sounded as he babbled a little bit of excited gibberish and then ended with “Mama”. I immediately shot up on the couch and questioned myself “Did he really just say what I think he said?!”

For most moms, hearing your 2-year-old say “Mama” is something we take for granted, especially when you hear it day in and day out. But for a mom whose child is considered non-verbal or non-speaking, it is a momentous occasion.

When he came around the corner into the living room, he was grinning from ear to ear, and his therapist said “Did you hear him?!” I said “YES!” and we both squealed. I picked my boy up and hugged him so long and told him how proud and excited I was to hear him call me Mama. It was a very big moment for him and for our family. You see, Sawyer had started saying words like “Dada” and “Mama” around 6 months old, but then he regressed and we didn’t hear them again for a very long time. Regression is a common theme with autism; a child (or adult) may develop a skill, and then lose it suddenly for seemingly no reason. This happened with Sawyer; at one point he would say the word but in a repetitive way, as a way of babbling. After Sawyer’s diagnosis, I wondered a lot if I would ever get to hear that sweet voice calling me Mama, and then it happened; he was almost 3 years old.

Most people take hearing and teaching their child to talk for granted. Living with a child who can’t speak, though, teaches you a lot about communication. Our entire family had to learn to be more observant of body language, facial expressions, and gestures. We learned to pay very close attention to Sawyer to figure out his wants and needs, and in turn, this taught me to be more receptive to my girls’ needs as well; I became more in tune and sensitive to changes in mood and behavior.

There are a few different ways you can communicate if your loved one can’t speak. Since Sawyer was so young when we began this journey, our early intervention therapists introduced us to PECS, or Picture Exchange Communication System. We would use cards with pictures on them to teach Sawyer how to use those cards to tell us what he wanted or needed. We also introduced sign language, and taught him signs for words like “more”, “cup”, “eat”, and “stop”.  There are also a lot of great apps for iPad users to help non-speaking people communicate, but since we didn’t have an iPad, we focused on PECS and sign language.

Sawyer showed us early on that he didn’t like using PECS, but he picked up on sign language pretty quickly, so that was our preferred method of communication for a while. Sawyer would also come take us by the hand and lead us to things he wanted, or do things like place the remote in our hand if he wanted to watch something on TV or change what was playing on TV. When he was hungry, he would often lead me to our pantry, but then he couldn’t point to what he wanted, so then I had to pay attention to his gaze to see where he was looking. Then it was a guessing game of what item on the shelf he wanted. Sometimes he would get so frustrated because I couldn’t figure it out, and then he’d cry and slap himself or me. I wanted to say “Use your words” but he didn’t have words. So most times I would just comfort him and say “I know, it’s hard, buddy. Don’t hit… Show me again what you want.” As he got a little older, he started running full-force into walls or objects, or banging his head on things out of frustration. Once he almost knocked himself out after running full-force into our kitchen and slamming his head into the counter. It was terrifying; I was constantly afraid he was going to seriously hurt himself because he didn’t know how to tell me what he needed.

Sawyer didn’t start speaking well ’til he was about 5 years old. His therapists and teachers at school were incredible, and when he started pre-school, he really took off and began to learn more words and how to communicate his needs and wants better. Sawyer’s progress was absolutely amazing; I watched as my frustrated, closed-off boy became more open and talkative, and I was so relieved to see his frustration and aggression mostly disappear.

Today Sawyer is almost 10 and his vocabulary is astounding. He not only speaks eloquently, but he uses YouTube videos to teach him other languages- he came into the living room not long ago telling me different words he had learned in Russian! He does have a speech impediment caused by a cleft palate in the roof of his mouth, so some consonant sounds are still hard for him, but overall his speech is amazing. Our family couldn’t be prouder of how far our sweet boy has come!

When I see families with non-speaking children, my heart goes out to them. Other than autism, there are other disorders out there that make it so that a person has trouble speaking, and I know how hard it can be, and how frustrating and sad it is when you can’t communicate with your child. As a parent, I felt like I was failing my child because I couldn’t communicate with him or understand his needs, and it caused a lot of anxiety and guilt. I can only imagine how it feels for the non-speaking person; can you imagine knowing exactly what you want to say in your head, but not being able to get it out, and no one around you being able to understand?

So today when I saw that memory pop up in my Facebook feed, I took a moment to smile and celebrate how far my beautiful boy has come, and say a prayer for all those who are still struggling and fighting that battle.

 

 

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