From the Archives of Our Special Needs Journey: Kyle is 15 years old and nonverbal, but he has come a long way with his communication skills compared to the time I wrote the following post, when he was 7 years old.

I was thankful that Kaylie was sitting directly behind me in the car.  I adjusted the rearview mirror so she couldn’t see the tears falling from my eyes and I turned on the music so she couldn’t hear my muffled sobs.  I let her see me cry sometimes, but I didn’t want to this time, especially because she was busy trying to calm Kyle down in the backseat of the car. 

 We had just left a bookstore where we had spent 45 minutes sitting on the floor together, turning page after page of dinosaur books.  Kyle had not wanted to leave and was extremely angry as I prepared to help him get into the car.   What is a mother to do?  He’s seven years old and 60 pounds.  His low muscle tone makes him feel much heavier so it’s difficult to pick him up.  When he doesn’t get his way, he bites his shoes and tries to bite me.  I know he has no intention of hurting me.  I know that he is trying to express his frustration in this way because he is nonverbal.  It’s in these moments that I wonder how I’m going to be able to continue leaving the house without another adult with me.  

I was finally able to get Kyle in the car and I breathed a sigh of relief.  But it was a moment too soon because he ended up screaming for the 20-minute drive home.  His scream is an eardrum-piercing scream that causes Kaylie to react in tears and my blood pressure to rise.  It’s the kind of scream that instantly makes me forget about the fun we had just had together in the bookstore. 

I don’t always cry when he behaves like this, but when this behavior happens frequently, I feel drained, defeated, and helpless. 

I can’t handle this situation like a typical mother.  There is no reasoning with Kyle, nor can I threaten a consequence like I could with Kaylie.  I try every trick I have learned from his therapists, teachers, and my own experience in special education.  I try the art of distraction and sing his favorite songs and turn on his favorite music.  I try to be empathetic and tell him I understand how he feels.  Sometimes these strategies work but many times, we have to simply wait it out.  Eventually, his crying will stop and in the next moment, he will begin smiling and laughing as if the whole situation had never happened.  But I am left wondering what he was thinking the whole time and know that if he was able to speak, these tantrums would never take place. 

We have approached nonverbal communication from several different angles and although we are far from having conversations and sharing feelings and emotions, Kyle can express a few basic needs and desires.  At age 3, we tried using PECS (Picture Exchange Communication System), in which Kyle handed us a picture of something he wanted.  It seemed to work, but I found it difficult to always have all of the pictures on hand.  When Kyle was 4, my aunt and uncle surprised us with purchasing an iPad and the Proloquo2go app for Kyle.  We were thrilled when he caught on quickly and using the app, he can request a drink or can indicate when he’s all done with something.  Although he only uses the app for a few requests, I still have hope that we can expand his nonverbal communication with it. 

We have also taught Kyle some basic sign language.  Because his fine motor skills are delayed, it took him months to learn how to sign more but now he uses it every single day.  Since learning more, he has also learned to sign help, bye, all done, and tablet (a sign that we made up).  Because of his delays, it will often take weeks before he masters a new sign and his weak fine motor skills prohibit him from signing the word accurately.  But as long as we can tell what he means, it works for us!

All of these approaches, however, cannot help us in those times when he wants to tell us more than a basic request. But we keep on trying and working and hope that one day we will get to that point.  I love it when he grabs my chin and pulls my face toward his so he can look into my eyes.  It’s as if he’s trying to tell me that he has something to say. 

“I’m listening, Kyle.  Talk to me; tell me what you’re thinking.”  I tell him I love him.  “Kyle, can you say ‘I love you’?”  And without hesitation, he gives me a great big kiss. He may be nonverbal, but he has much to say!

Present Update: With the passage of time, with maturity, and with Kyle’s new Speech Generating Device, we don’t have as many communication issues as we did when he was young. It’s still a source of frustration at times, but there has definitely been much improvement.

Kyle uses his speech device near the beginning of this video that I recently posted on our YouTube Channel. Check it out!