Wednesday, May 28, 2008

The month of May

Ok, so one day I'll get to that quote. I have been writing a post in my head for a week now, and yesterday, I felt like I had a whole new chapter to add to it, so I had better get started.

First of all, aside from a fun wedding and one or two other events, this has not been a good month for the Sims family. Alex travelled and worked late a lot, and the kids and I got sick pretty much every time he was gone. My social life has been nonexistent and that is never a good thing. But the main thing that was difficult was a change that happened in Daniel. It is all a blur so I can't tell for sure when it started and ended, but there was a time where he completely regressed and stopped using the few words he had. He refused to communicate. I have never been so dumbfounded at human behavior in my life. I know for a fact this kid can say ball or help or use some sort of a sign to get me to get his ball if it rolls under the couch. And yet, when that happened, he would grab my hand and lead me to the couch and try to use my arm as some sort of tool to get his ball out. I would ask him over and over what he wanted...did he need HELP? did he want his BALL? Could he just look me in the freaking eye and acknowledge that I was his mother and not just a tool to get his FREAKING BALL? Nope. Even if I refused to get the ball until he did so...he would just yell louder and run through the house looking for Lainey to hit so that he could get the biggest melodramatic reaction possible. How is that easier than saying ball? Or looking me in the eye?

And then it hit me. Daniel has autism. It is not a speech problem. I know we have been down this road before, but bear with me for a second. With the first diagnosis, we were told that if it weren't for the speech/language/communication issues, he wouldn't necessarily have the autism diagnosis. At least that is what I heard anyway. The doctor highlighted his strengths in the 'social' aspect of autism. He smiles! He makes eye contact! He sometimes seeks adult attention! And who cares about seeking other kids attention because he is only 2! What I didn't realize is that Daniel wasn't learning to talk because he wasn't capable of learning to talk. He wasn't learning to talk because he didn't want to learn.

When this hit me, it was like a revelation. If I lost a ball under the couch and needed help, I would walk up to you and ask you about your day, tell you about mine and end with a dramatic story of losing a ball under the couch. It would take me at least 10 minutes before I got to the point of asking for HELP (at which point you would gladly go get the ball so that you could get me to SHUT UP). Although I am not good at communicating, I thrive on it. Alex is the same way, but he is actually good at it. And Lainey....well, lets just say she is going through a phase where I can't just bring her a sandwich for lunch. She gives me a script of how I am to bring the sandwich and what I am to say and then what she will say and on and on and on....(for those of you who know how impatient I am, we are working on limiting this for the sake of my sanity).

During this regression I realized that his speech/communication delay was a 'social' symptom of his disease. I finally knew without a shadow of a doubt that Daniel has autism. And so I started grieving a little. And I started praying. And I stopped saying, "oh thanks for asking, Daniel is just great. His school is great, he is great, everything is great!". Instead I would say, "Please pray for him. He is not doing well. It is not great".

And then a miracle happened. Before the regression, Daniel was able to say "juice" when he was thirsty...most of the time, anyway. I got in the expensive habit of giving him juice boxes instead of putting juice in a sippy cup because it seemed so much easier. During the 'regression' he did the whole screaming until we guessed the right thing (meaning we hand him things and he threw them in rage until we handed him the correct thing). One day, though, he looked up at me and said, "juice box". At first I thought I was hearing things, but I decided to give him the juice box and see what happened. He took it and said, "juice box". Not only was he back to saying juice when he was thirsty, he also was adding "box" (which we had never even tried to get him to say). A few days later he started saying "want" when he wanted something. He started saying new words. And then one day when we were going on a longer than normal search for his "passy" before naptime, he looked up at me in tears and said, "I lose passy". Needless to say, I almost fainted. God in His goodness also provided confirmation that I wasn't going crazy when his teachers reported the same things we were seeing.

I think that catches you up to yesterday. I will write about that later. This is enough for tonight...for me and for you :).

4 comments:

Reed's mom said...

amanda, so sorry you all have had such a hard time lately. continuing to think of you and pray for you in this very challenging journey that the Lord has laid before you. but encouraging to hear some of the new things that daniel is doing too!

Stephanie said...

Glad to hear from you. And you're a better communicator than you give yourself credit for.

Brian and Ella said...

hooray for daniel!! amanda, that is so encouraging...how amazing that he is saying words that he is picking up BY HIMSELF!! God is so GOOD! we will continue to pray for daniel and your fam.

teri said...

Just wanted you to know that we think of you guys often and pray for you too. You are such a gifted writer and strong mommy :)