The most challenging issue was toileting. He absolutely refused to relieve himself anywhere except at home, holding it in all day at preschool until he could finally go when we got back. Sometimes he couldn't hold it on the way home and his diaper would just overflow, soaking through all his clothes. I was so worried about his health, but I felt so helpless not knowing how to help him.
Then in April of this year, thanks to generous sponsors, I started my program at PenguinSmart. The speech therapist taught me how to make communication boards and how to have "conversations" with my son. At first, I was skeptical—could a child who had never expressed himself really communicate? But I decided to give it a try.
To my amazement, our lives began to change. I started using the communication boards in our daily routine under the therapist's guidance. Instead of just preparing everything for him like I used to, I learned to let him express his needs and make choices through the communication board first. After some trial and error and lots of practice, we discovered something incredible—he started wanting to communicate on his own! This was behavior I had never seen in six and a half years. I could hardly believe it.
The therapist also taught me how to read my son's signals—all those little movements and subtle sounds I had completely overlooked before actually had meaning. He was trying to tell me things all along. It turns out he wanted to make choices too, and he wanted to share what he liked with me. Through the communication board, I discovered he had his own preferences, things he wanted, and things he wanted to say. I'll never forget that moment when I first understood his choice—the light and joy that appeared in his eyes.
Five months later, just as he was starting elementary school, another miracle happened. Near the end of our coaching program, this child who I thought would always need diapers can now be guided to use the toilet independently! No diapers needed at all! Now, almost 7 years old, he can start first grade with dignity and maturity. I'm so grateful.
For the first time as a mother, I feel like I can not only care for my child but actually teach him. I've also realized that my son has been trying to express himself all along.
My dear boy, I hear you now!
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Sarah, mother of a 6.5-year-old boy with a rare disease (spinocerebellar ataxia,SCA)
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A family sponsored via "Wings of Hope for the Slow Angels" Initiative 202504 Batch. Learn about the initiative https://mypenguinsmart.com/wingsofhope-tw
Posted on PenguinSmart Facebook page https://facebook.com/penguinsmartus