About 2 months ago, I became obsessed about a diagnosis for Jordan's inability to speak while reading a book called "Schuyler's Monster: A Father's Journey with his Wordless Daughter" by Robert Rummel-Hudson. She seemed to be a normally developing child with a speech delay until at around age 3, she was diagnosed with polymicrogyria. Yes, that is a big word. But even bigger is the fact that this debilitating condition of the brain has left Schuyler with the inability to speak...forever. It is a malformation in the brain that prevents people from being able to form words and speak. I was drawn in by the book and then found his blog and then videos on You-tube. I couldn't get enough information about this condition. After all, I had a 2 1/2 year old who was also, for the most part, wordless. We had heard an occasional word from her, but mostly she didn't even try to speak. She definitely made a lot of noise, but there were only about 4-5 words that people could actually understand. Could Jordan be wordless...forever?!?
I found several websites explaining polymicrogyria and the various symptoms that can be displayed with the diagnosis. Jordan fit too many for me to push it aside. However, I just couldn't find enough strength in myself to call the Dr. to see if they could read her MRI again to see if she could possibly have this extremely rare condition. One of the websites explained that the condition is so rare and actually difficult to see in an MRI, that unless they are looking for it, it could easily be overlooked. When Jordan had her MRI done, it was to look for cerebral palsy, not pmg.
I watched videos of Schuyler at approximately Jordan's age and could not believe how much I saw my own daughter in those images. Running around, playing, laughing, exploring her world, making sounds...but no words. I gradually started to watch more recent videos of Schuyler and found one that showed her at around the age of 9 or 10 reading a book. I was mesmerized by watching Schuyler's lips. Although, she was saying words by moving her tongue in her mouth, her lips remained open. However, when she was not attempting to speak, her lips would close normally. This was HUGE for me!! Jordan does move her lips when making sounds (trying to speak) but the sounds just aren't coming together to form words.
Somehow, this gave me the ability to move on from my near obsession with Schuyler, Polymicrogyria, and Augmentative and Alternative Communication devices. I was able to see that even if Jordan has some diagnosis that finds her unable to speak as clearly as the average person, or even if she is not speaking for several years to come, or maybe she never is able to put together more than a few words so that others can understand, it makes no difference how I feel about her or what I am currently doing to try to encourage and develop language in her. I realized that Jordan is who God created her to be and I love her exactly how she is.
Fast forward to her surgery about 3 weeks ago. After a week or so of feeling pretty out of it and needing LOTS of cuddle time, Jordan started getting back to normal. A few weeks before her surgery we had started Jordan watching "Signing Time" videos during her 3 feedings during the day when she is in her feeding chair and watching videos. About this same time, we started seeing her using the signs during the videos and even occasionally at other times. It was awesome to see her signing!!! Although she still didn't seem to understand that signing and language could communicate, it was great to see her imitating it. She also started making animal sounds when we would read a book or watch a video with animals.
Then in the past 2 weeks, Jordan has shown AMAZING progress!!!! She is signing and using words in everyday interactions with us!!! Yes, Jordan is COMMUNICATING!!!!! She has started to understand that if she says or signs something, she will get what she wants. It was like a HUGE lightbulb went off inside her head and now all of the things she has been able to hear and understand, she is starting to use with us to communicate. When I change her diaper and say "wet", she responds with "et." When I ask her if she wants "up", she responds with "bup." But the most amazing thing to hear is "daddy!!!" All day long, wherever she is, she is always saying "daddy!!"
I feel as though I have witnessed a miracle in my own life! My wordless daughter has started to speak!!! I am guessing that she has 20 clearly pronounced words and probably 20 more approximations. It is amazing to me to watch my little Jordan blossom! I feel as though God has given me a glimmer of hope when I was feeling as though things had gotten stagnant with her progress. When she was discharged from feeding therapy in December and they said they would see her back in a year, I felt as though time had stopped. There was nothing I could do to help my baby girl move forward in her biggest challenge, eating. Although, we were seeing a speech path and receiving therapy, I didn't necessarily see anything happening. I just kept blaming her poor oral motor skills.
Well, now my baby girl is talking and developing those oral motor skills and I feel so much more encouraged that by the time of her next swallow study in December/January, she just might have something amazing to show Jenny and Ellen at Mary Free Bed!!!
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