Appropriate title

Right now I am really trying to soak in the importance of the title for my blog...One day at a time. I should probably not blog about this until I've had time to debrief a little bit more, but the boys are napping and it's quiet here--I won't get that for awhile again so here I go.

We had our follow-up appointment at Children's hospital with the psychologist that originally evaluated and diagnosed Joel with autism. We have been participating in a research study for the past 5 months and part of the study is a complete evaluation, exactly like the one he had done originally 11/2 years ago. Amazingly, it was the same doctor both times and so we feel like she really has a handle on where he was then and now.

I will start out by saying that Joel is doing really well. God has worked some pretty awesome miracles in his life in terms of development and growth. People frequently tell me that they cannot believe he has autism and that he seems so "normal". I've always wanted to believe that while knowing in my heart that he does still have some significant challenges. After all, people say some meaningless things (like they really know after observing him for 5 minutes in the hallway at church).

Anyway--what we found out is that cognitively, he is extremely bright. His congitive function was testing at the level of a 6 year old (he's 3). However, his language/communication, gross & fine motor skills, and social behaviors test at below average (not very far, but not quite at the "average" level yet). So, if you just compare him to other kids, he looks like he is doing okay--not great but not terrible. BUT, when compared to himself (his own capabilities of function) he is quite behind. In short, his body is not able to put out what his mind is able to comprehend and understand. This provides a fair amount of frustration for him now, but may possibly only get worse as more is expected of him at school, with peers, etc.

That being said, we then moved on in our discussion to the "next steps" for Joel in terms of how to get him the help that he needs. What types of therapies, what specific strategies to use to obtain our goals, and what to expect in the future. All while talking with her I kept seeing these imaginary neon signs flashing in my head that said: "LOTS OF TiME", "LOTS OF MONEY", "ONGOING".

I have never really been one to shy away from hard work. But honestly, with a new baby coming, I just don't know how much I will have to give in the upcoming months. Thankfully he will be in preschool 4 mornings a week and will be receiving therapeutic services there. I will have to be in CONSTANT communication with his teachers to communicate what specifically he needs to be working on, as well as learning from them what things they are learning and what is coming up so that I can prepare him ahead of time to be able to actively participate (i.e. what songs do they sing in the classroom and what are the hand motions that the kids will do so that I can teach him now and he will be able to do it with them when they learn).

This also means finding new private speech and occupational therapists, contacting and fighting with insurance to see what they will cover, and deciding how much we can afford. We've taken a little break on some of the "home therapy" stuff that I had been doing for the summer but I now realize that I need to ramp up and really get the ball rolling again with new strategies and new interventions. It cannot be stressed enough that the younger the child, the better this therapy is received. The older he becomes, the more he will have difficulty with certain challenges if we aren't addressing them head-on right now. As his pyschologist said, the challenges of autsim never really go away, they just change faces as he grows.

So, I'm off to do some more planning, researching, strategizing, and most importantly, praying for these next steps in our lives. We would appreciate you prayers as well. Part of me wants to cry as I am again reminded that this is our reality, but another part of me wants to use this as encouragement to get working again, and continue putting our trust in God who has so faithfully brought us this far.