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By Stephanie Sumulong

I have written many times before about Owen’s speech (or lack thereof) and how I get frustrated. I have in the past been (secretly) angrily jealous of other kids his age and younger being able to express themselves and their needs/wants. I have blamed myself for not picking the right therapist, taking time off, and for glacially slow improvement. I have felt extreme guilt at not starting speech therapy until Owen was nearly 2 1/2 years old. I have often commented on others’ blogs or on Facebook statuses that I am jealous about their child’s improvement when I should have simply said “That’s awesome” and “Way to go!” (I’m sorry about that last one, friends.)

Graphic provided by Stephanie Sumulong I have slowly started to be OK with where Owen is in relation to speech, and I’m not even quite sure how that happened.

A realization came over me when a friend recently posted a video of her two-year-old daughter with Down syndrome, and she was talking. I didn’t feel jealousy or sadness; instead, I felt very happy and excited for her and for her daughter. As I thought about it afterwards, I was surprised at the absence of the jealousy and the sadness, since it seemed commonplace for me to feel them.

After many heart to heart chats and weekly updates with Owen’s private SLP, I understand that speech for him is HARD, and I mean really hard. He tenses his mouth/jaw so much that it makes it difficult for him to form his mouth in ways for sounds to come out. It’s only after intense use of a Z-vibe that he loosens up enough to begin mimicking B, P, and M sounds. On the other extreme, he barely feels his lips at all, so that makes it all the harder for him to figure out what to do with them, including trying to drink from a straw. He fatigues quickly after just a few tries to blow through a straw, whistle, or horn. The same is true with trying to suck from a straw. He wants to try, which is good news, so we keep working on building up the times he tries—we’re up to 4 tries at this point. It really is a work in progress, extremely slow progress, but he IS trying and that is most important. I have never really known until now just how many things must come together in order for a person to speak verbally and to do that well. With all of things that he has trouble with, it’s no wonder he does not have any verbal words at this time.

Will he ever speak even one-word sentences? I don’t know. If it does happen, it’s going to be several years from now. I definitely have a longing to hear his voice, but I’m no longer in tears reading other people’s updates about new words being said by their child (who is typically much younger than Owen) or seeing someone’s video of their kiddo talking up a storm. I know he understands nearly everything we say, and while there are definitely words/phrases I long to hear (Mom is at the top of my list!), there is no doubt that he can communicate with us. I will always be proud of him whether he talks verbally or not. Owen is who he is, with or without words. And to me, he is perfect.

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About the Author

Photo by Solito A. SumulongStephanie Sumulong is mom to a young son with Down syndrome. She is also an online social studies teacher, although she considers working with her son to be her most rewarding teaching “assignment.” Stephanie writes a blog, chronicling the triumphs and challenges raising her son and has had several posts featured on other blogs, including the her blog The Sumulong3, as well as International Down Syndrome Coalition, Down Syndrome Blogs, and Down Syndrome Daily.

 

 

 

Note: Originally posted at http://thesumulong3.blogspot.com/2013/07/accepting-hard-stuff.html.

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