Communicating with a Child with PDD-NOS

by Caroline on October 2, 2012

Communicate Child PDD-NOS

Awww, Mom, really? M-bug at just three days old.

My daughter, M-bug, has been diagnosed with PDD-NOS, which stands for Pervasive Developmental Disorder – Not Otherwise Specified. It’s a really big name for a disorder on the austim spectrum. Children who have PDD-NOS usually have trouble both communicating and relating socially to the people around them. It can be tricky to diagnose, because it doesn’t follow all of the “rules” or symptoms of autism. Some of the autistic behaviors are there, but others aren’t.

Developmental Delays Child with PDD-NOS

An “M-bug Monroe” Moment. She was 14 months old here, and still at least four months away from walking.

It’s been quite a journey to get to the point of diagnosis and therapy for M-bug. We noticed when she was a baby that she seemed to be the last child in her age group to learn developmental skills. She struggled with learning and remembering things. She loved to be around people and to play with other kids, but she didn’t know how to do it. She’s 10 years old and still prefers to play animals with the six-year-old neighbors, rather than … whatever it is “neurotypical” 10-year-olds do these days. I’m not sure I’d consider our 12-year-old, Bubbles, to be typical either, so I simply haven’t got a normal behavioral yardstick to measure their behavior by. Getting the diagnosis of PDD-NOS was a relief, because it gave us a new yardstick.

Communication has always been an issue with M-bug, in several ways. First, since she has such low long-term memory, skills and words have to be practiced and repeated many times before she has command of them. Second, as with many children on the spectrum, she has an obsession that colors how she views everything in life. Her obsession is animals. She talks about animals all the time, counts in animals, thinks in animals. Understandably, this gets in the way of a “normal” conversation. Third, she also struggles with language and reading skills. Right now she’s somewhere around an early third-grade reading level, which is truly amazing. She came up over a grade level within the last year.

Children with PDD-NOS

M-bug and a puppy friend. Doesn’t matter what kind of animal it is, she loves it.

It’s been interesting seeing her reading skills start to click into place. Over the summer I noticed her reading street signs, or signage on store fronts, when we were in the car. She’d never done that before. It was as if all of a sudden her eyes were opened to the fact that people everywhere are trying to communicate with her, and all she has to do is read what they’re telling her.

Something interesting happened last week, too. I, unfortunately, caught the sore throat and head cold that Decoder Man had the week before last. I was miserable, but still had to get M-bug to her therapy and keep an eye on both girls’ lessons. Wednesday afternoon I took my laptop to my bedroom and just tried to rest for awhile. Both girls have Gmail accounts through their school, and we keep chat windows up so that I can tell them when to switch subjects or answer any of Bubbles’ questions. M-bug doesn’t usually have anything to say — maybe just a one- or two-word response to a question. At least, it was like that until last Wednesday.

Since I was sick, the girls didn’t want to bug me any more than necessary, and and they were sending me lots of lovey-dovey smiley faces to make me feel better. But then M-bug began to type actual words to ask what to do next, rather than just yell at me upstairs.

Communicating with kids with PDDNOS

Kids with PDDNOS

What? My shorts are on backwards? Oh well, I’m cute anyway!

By the time this chat exchange was over, I literally had tears in my eyes. My little M-bug, who has so struggled with reading and writing and … words in general, was using those same words to type to me. Of course she could have just said them, but that’s not the point. Using the physical words themselves, putting the thoughts and letters together … that’s huge. And exciting, and such an answer to prayer. Plus, I got a big kick out of “compooter.” Too darn cute!

Children who have Autism Spectrum Disorders have to learn to communicate in their own way, and their families have to learn to listen differently. It takes a whole lot more work, and a lot more time, and a lot more tears. It’s so heartening to see progress.

{ 8 comments… read them below or add one }

Christine October 2, 2012 at 10:15 am

How awesome to see the progress! I SO remember John’s first sentence “I see bus”. I’m not sure if you know that he has a severe hearing loss, but those milestones that might be less celebratory with other kids are fabulous!

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Caroline October 2, 2012 at 7:36 pm

Thanks, Christine! I completely understand the “relativeness” of developmental milestones. They can be few and far between, or just slow in coming, but when they do, they’re a blessing.

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Merilee October 2, 2012 at 10:48 am

“It was as if all of a sudden her eyes were opened to the fact that people everywhere are trying to communicate with her, and all she has to do is read what they’re telling her.”

This almost made me cry! Love that girl!!!

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Caroline October 2, 2012 at 7:44 pm

Thanks Mer. :)

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GmaG October 2, 2012 at 9:01 pm

What a great day! We are always proud of both the girls and you too for the extra efforts you give. We are very happy with the progress they are making. What a delight. We really enjoyed these photos of M-bug today. Great!
GmaG

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Caroline October 3, 2012 at 7:21 am

Thanks, Mom! :D I’m proud of them, too.

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Bianca Martinez December 29, 2012 at 12:56 pm

After reading this now I am able to understand where she is coming from. She is amazing girl of God. I can understand how hard is for her to read and write. I have a learing disablitites that is hard for me to able to spell etc… I love ur family! Stay strong!

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Caroline December 29, 2012 at 3:30 pm

Thank you Bianca! :)

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