Friday, January 5, 2018

Navigating the world of a non-verbal child

Having a child that is non-verbal presents many challenges, and no length of time ever makes the lack of speech any easier. 

There are many days I wish my daughter could simply tell me what’s wrong and when she's hurting. I wish I knew how to fix whatever is bothering her at the time. I can see the frustration she goes through, and it breaks my heart. 

We are fortunate that she can say a few words (mama, buba, dada). When she gets really upset and whinny is when I hear mama the most. She will start calling for me, and I just get as close as I can to her and do what I can to comfort her, without even knowing exactly what is wrong. 

She has been getting so frustrated lately that when she cries she starts to gag herself. She will do this for long periods of time, while we are doing everything we can to try and figure out how to calm her down. 

For the most part, I think her crying outbursts are her way of telling us she doesn’t want to do whatever it is she is doing at the time. For instance, the other night when she about to be hooked up to her feeding pump to eat, she started crying uncontrollably. I took this as an indication she didn’t want to eat at that time. 

Instead of having her sit there and cry, I took her out of her high chair and started playing with her. I got her happy and distracted, and gave her time to calm down. An hour or so later I started her feeding, and she did fine. 

Alyssa is just like any other five-year-old child. They all have times when they get tired, cranky, sad, mad or angry. Alyssa has all of those same emotions, but deals with them in a more internalized way. As she gets older I am seeing more of the frustration coming through with her not being able to verbalize her wants and needs. 

Alyssa uses an AAC device (Augmentative/Alternative Communication) at school, therapy and home. It looks similar to an iPad, but way heavier and bulkier. Her teachers can program every aspect of the device, including the words and the background. Over time, Alyssa has made great advancements with the use of her device. She continues to impress her teachers and therapists. 

The AAC device is great for communicating with Alyssa during certain activities, but it is limited to being able to express very basic commands. It is my hope that in time she will learn to use it more effectively, but our current delimma still stands, even with the use of the device. 

Having breakthrough moments when I feel that Alyssa and I can connect and communicate, whether through words or not, is the most exiting moments I have as a special needs mom. I’m still learning how to navigate her world. It is an intricate and exciting world that we are all so happy to be apart of.  

Mommy and Alyssa

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