Photo by Tracy Grace Photography (dot com)
I can do nothing until this post comes out of my head, because it keeps bobbing around my brain and the more I think about it, the more thoughts come flying toward it... this blob of information, thoughts, feelings, that need to get purged onto my blog.
I'm sad. There, I said it again... Sad, because John Michael has so much to say, and is really trying to say words to communicate, and sometimes I just don't get it.
Here's a recent conversation between John Michael and myself from last night...
"Yes, John Michael?"
"A horse? Yes, a horse says "nay nay"".
He throws his head back and says, "NO!"
"Yes, John Michael, what is it, Son?"
"Do you mean airplane, like you saw in the book?"
"NO!" [tears are forming]
"Can you show me or point?"
"Awh!" and he walks away frustrated.
We both end up frustrated, because he wants to tell me something on his mind, and it's not coming out in a way I understand.
Doug feels the same way.
I know it's a phase, but it could be a long phase... My friends tell me that speech in kids with Ds often takes off around 5 to 7 years of age. Well, I understand, rationally, but it's hard sometimes when you can't understand your kid!
On a positive note, John Michael has many, many (150 or so) words that I understand and that's EXCELLENT! He understands most of what I say and usually answers with one to three words in reply. It's those times in the car or at home when he has something on his mind and can't put the words together clearly. So last night as I tucked him into bed, I talked to him assuming he could understand every. single. word. I. was. saying.
I stroked his cheek with my fingers and, choking back tears, told him...
"John Michael... Mommy loves you very much and I'm so proud of you. I know you can understand so much of what I say to you, so I want you to know that I understand that you get sad when Mommy doesn't understand a word or something you're trying to tell me. I'm sad, too, and I know it's hard to say the words sometimes. But we'll just keep trying and we'll get it. OK?"
I left the room crying, just as I am right now... Softly, but the pain is there.
I am so darned proud of this boy and sometimes it pains me to know how much he will struggle in life. Luke is a constant reminder of how a typical baby develops and hits his milestones without even blinking twice. So, it's just a short phase I'm in.
Doug and I talked to his speech therapist today and she said that JM being frustrated is a good sign. I tell you, that actually lifted my spirit hearing that. She said that it shows that he has a desire to communicate and just isn't processing the words quickly enough. She is going to start using a PECS (Picture Exchange Communication System) aid to help bridge the gap for a bit. It's a board of pictures of words he's familiar with and he can point to the picture, for example, if he's trying to say airplane and I'm just not getting it. He occasionally uses signs, but has really dropped his signs. He does remember them, though, because he will say the word when I sign something to him.
Finally, the photo, above, really hit me emotionally last night. When I first saw it, I thought it was cute to see the kids running in circles around Doug and I. That's really how we feel many days at this stage in our family life. But last night, I saw the photo in a new way... a way that made me cry again. I saw the three older kids running so fast that their bodies are blurred, and there is John Michael, in focus, not able to keep up... being "slow". Today, seeing it again with new eyes, and reflecting on it more, I think I prefer John Michael's pace... bringing us into the slower lane, enjoying the small things in life and living in focus...
Then, out of the blue, John Michael says to all of us in the car... "love you, kee kee (Nic)" "love you, deddah" "love you, nanna" "love you, Looo" "love you, Mom" "love you, Dadda" and all the pain and tears lift and it's a beautiful day with our very sweet, beautiful boy.