Sunday, April 30, 2006

April 2006

It's been too long. No excuses, no good explanations other than writers block.

Hopefully, I'm back.

The rollercoaster has been full speed ahead and I think we're finally slowing down and getting ready to pull into the station. Jakob and I have fared pretty well...neither of us threw up once.

Since my last entry...Kenny moved out, Aunt Sandy moved in along with Sadie (beagle), Sophie (miniature long-haired dachsund) and Casey (cat)...Mom and Dad cleaned my garage, I've redecorated my bedroom and...........Jakob has said some words!!!!!!!!!!! I've heard several..."up", "open", "bath", "belly", "please"...

I'm really tying not to get too excited. The only words we're getting consistently and appropriately are "up" and "bath"...the rest seem to come and go. Now that I've been doing this mothering thing for awhile, I've noticed the patterns...that whole two steps forward, one step back stuff. When we're in the two steps forward portion, life is wonderful...I'm not so crazy about the one step back part. I've always believed there's a fine line between hope and reality. I hope that Jakob will speak...I believe he will but reality is...he may never. I feel like I'm always hoping for the best but preparing for the worst. That's the reality of our situation.

Now let's talk mumps...Jakob has not had his second dose of the MMR. What does a mother of a child with autism do? Follow the advice of one doctor who says "you have to get the shot...they're harmless and the mumps is a serious don't want Jakob to get the mumps"...or listen to the doctors who believe that the first MMR contributed to Jakob's autism say "don't get that vaccine...I've seen kids who have been progressing and then crashed after the second MMR"? Really tough question...I wish I knew the answer. It's such a scary decision and I'll be honest...I had a bad feeeling about Jakob getting shots before he ever had one...if I had listened to my gut, would he have autism now?? I don't know. Do I give him the shot and risk losing everything he's learned? Did I mention he says "up" and "bath"? Do I wanna risk losing that?? I don't I want him to get mumps? No. If I make the wrong decision...who suffers?? Jakob. Stressful. Torturous. Do I have enough confidence in what my gut tells me to risk Jakob's well-being?? I don't know.

Whew. It's a relief to get that off my chest.

Now back to the positive stuff. It's taken some time for Jakob to adjust to going back and forth between the two households. There's no doubt that the change for him is drastic. Kenny and I do things very differently. He's one tough little booger and he seems to be adjusting pretty well. I've noticed that it's been taking him less time to re-adjust to my house each week. I've also been able to figure out what Jakob needs in order for him to self-regulate. Upon his return home, we must begin with him taking a couple of laps around the house so he can make sure all of his favorite toys are still here and in the right place. Then it's up to my room and straight to the tub. He's really been loving the bath. It's so cute...I always have access to the tub restricted so he has to request "bath"...and if he says "bath", I can't tell him "no"!! So into the tub we go. Once he's in the tub, he does a lot of talking. He pretty much tries to say any word I tell him to. The best was "belly". It came out of nowhere...he was pouring water on his stomach and I said "pour water on your belly" and he said "belly". I stopped dead in my tracks and said "say belly" and he said "belly"...then I said "show me belly" and he patted his belly. It was an amazing moment. Awesome moment.

I hate when there's a major decision to's so distracting from the everyday joys. I wonder how much I'm missing by trying to figure out what I should do. Frustrating, really. Too bad I can't just spend all my time enjoying just don't work that way. Darn it.

So...I do my best to relax as much as I can. Wait for answers to come to me. I'm starting to doubt that they will ever as soon as know who to believe in all of this, we'll be good to go.

I have one decision that I've made for Jakob's summer. I'm pretty sure it's the right decision...I feel good about it. He'll continue with ABA, OT and PT. Then there's a program at his school and a summer camp. I'm also gonna add speech and hopefully music therapies. It sounds like a lot but we're still not close to 40 hours per week. Wow...40 hours is a lot. And as much as I hate to be away from him, I believe he needs the help. I feel like time is running out...he's already 4 1/2...the pressure is on.

I feel like I'm being pulled in so many directions. I seem to get different answers to the same questions depending on who I ask. Just like autism itslef...inconsistent and confusing.. And no matter what I choose to do with Jakob, there's someone who thinks I'm doing the wrong thing. It causes me to doubt myself as his mother. I mean, I am his mother...who knows him better than me?? Right? But...there are certainly a lot of doctors and therapists who know more about autism than I do. So...what's more important...knowing autism or knowing Jakob? A big part of Jakob is his autism but autism doesn't define who he is. I believe that. So...what comes first? What do I focus on?? Jakob or the autism???