March 1, 2012
Lost in translation
For the past month you have heard me talk about Josh's heart, his incredible miraculous but very broken heart. Today, I want to veer off that for a moment and talk about the next biggest issue. Josh is four years old, and he still is only speaking by combining two words. Now, this is a HUGE improvement from September when he was barely using one word, but it's still a serious delay. All along this journey to hear my son's voice, I have believed that he only had a speech delay in the expressive language area, not the receptive area. I believed that he had full comprehension, full receptive language skills.
Today we had a speech assessment. I was infinitely discouraged to hear that he is only understanding language at a 2.5 year level. This according to the pathologist explains why he is only speaking with two words. I couldn't believe it. Really? This kid who know's his alphabet, who can recognize all the letters, and put them in order if mixed up, who can spell all of our names, all of his friends' names, who can count to 29 front to back and can quantify those numbers? How is it that he doesn't understand past a not yet three year old child?
I spoke with his teachers, who assured me that while he is delayed he is able to understand in simple terms, and that he get's used to and understands those he is with all the time (them, us, our parents) but if we try to give him a big long sentence and ask him to do something, it get's lost in translation somehow.
ARGH! I can't tell you how frustrated this makes me. I went in today expecting to hear how marvelous he has been doing, how much he has accomplished in the time since his last therapy session; and he has!! When he started school he barely spoke, and if he did it was only one word at a time, and often very quietly. Now, he uses two words for the most part, and has been known to say three, four and sometimes five words to get his point across to us. He doesn't use proper grammar, he struggles, we often have to give him the sentence and have him repeat it, but comparatively?! He's done an outstanding job of learning to speak and communicate!
So, to hear that he's still so far behind, even though I understand it doesn't happen over night... well, it leaves me discouraged. That's where I am at today. Totally discouraged and asking why... The answers that I want cannot be given to me, no one can tell me medically what is wrong, or if he will ever catch up. I see improvements yes, but I also just miss the stage of innocence he's in, and hearing his thoughts. What's going on in his mind? How does he think? What does he think? What does he feel? I yearn for him to communicate with me the same way I yearned to hold him after he was born. It's an ache, a physical ache that keeps me up at nights.
Pray for us, pray for him, and pray that we find the answers or key to help him learn, to understand, to communicate.