Tuesday, June 21, 2005

June 21st, 2005

Not quite sure where to start...we had a good weekend. My parents were in town for Father's Day and it was so nice having them around. They are just so good with Jakob, they accept and love him just the way he is. Mom is the patient teacher and Dad loves to mess with him. It's funny, Jakob tolerates anything Dad does to him...hanging him upside-down, flying him around like an airplane, rolling him around on the floor. I have to say that Jakob handles things that Dad does to him better than he does when we do it. Dad just has a way...he always has. I watch my Dad with Jakob and I remember how he used to mess with me. He used to drive me nuts sometimes. I can remember him picking on me to the point where I'd get up and stomp into the other room...he'd laugh and say "stomp, stomp, stomp, stomp" and "oh, be mad" and "come on". I'd sit in my room and realize that I was getting all upset over nothing. I think that's how I learned to laugh at stuff instead of get angry. I'm gonna try to do the same with Jakob. When he gets mad, there's no turning back. So if I can get him to laugh instead, we'll be in business. I wonder if I can do the same with Kenny...those darn New Yorkers are just so high-strung...

Jakob had a rough night last night. He's going through a phase where he likes to open and shut things. It would be no big deal if he'd just open and shut one time, but it's over and over and over. And it's slamming...not just shutting. His favorites are the screen door in the back and a storage box on the deck. We tell him "last time" and "all done" but that no longer works. I blame us for the problem because I don't think we've beeen consistent enough. Anyway...he had a complete meltdown when Kenny told him he couldn't be outside anymore if he wasn't going to listen. He lost it. Screaming, stomping, crying, arm-flailing, pulling us to the door. It wasn't pretty. He couldn't calm himself down. So finally I took him outside, put a bag of birdseed on the box so he couldn't open the top and I sat in front of the screen door. He sat in my lap wimpering for a few minutes, then he passed out cold. This was at 6:00. I put him on the couch where he slept until about 8:30, then I put him to bed. No dinner, no diaper change, no bath, no pajamas, no tooth brushing, no nothin'. I do not enjoy nights like that...gotta figure out a better way to deal with him when he gets his mind set on doing something. Once again, I'm not sure how much of it is the autism and how much of it is just being a 3-year-old (almost 4).

The Sensory Learing Program is going well. I think we're on about day 23 of the 30-day program. I am amazed at how much more he seems to be comprehending. There's no doubt when he's understanding what we're saying to him..if only he'd actually do what we're telling him to do. The current goal is to get him to get us things...if we say to him "go get your sippy cup", we want him to go get it. He still doesn't do it. If we say "let's go for a ride" or "let's go outside", he sems to get that...I think he he understands "wanna watch tv?" and "wanna get in the tubby?" but he's not consistent with those. It's just so hard to say for sure. Where's that crystal ball so we can find out if and when he'll start talking?? I'd be glad to pay big money for that crystal ball...

My favorite result of the Sensory Learning is how much calmer he seems to be (when he's not slamming things). He really is shockingly calm. On Sunday, he sat in his crash corner with Kenny and Dad for over an hour just watching the birds out the window. He's not zoning out either, he's just chillin' and lookin' around. He'll do the same in the back yard. He'll just sit in a chair, eat his crackers and smile as he looks around. He's taking it all in and I can see the wheels turning. I wanna reach him so badly so I can find out what he's thinking. I love it when he's just hangin' out, looking around and he starts to giggle. I'm dying to know what's so funny. He really is such a happy kid (when he's not slamming things)...

The back yard has become my haven. It's the only place that I feel totally relaxed and stress-free (when he's not slamming things). I've added a couple more bird-feeders and birdhouses, a bird bath with matching bench, a bat house (for mosquitoes), hummingbird feeders and a few more flowers here and there. So far, Jakob's been using the bird bath more than the birds but I'm totally cool with that. He loves it out there...he'll stay for hours. The beautiful thing is that he'll entertain himself and he'll go from one activity to another which is great for a child with autism. He's very aware of everything that's going on around him and he's having fun. I'm trying to get involved in his play as much as I can without smothering him...he's a lot like me in that he likes his space. I have to keep reminding myself that I was an only child too and being alone isn't a bad thing...it's actually quite nice and peaceful sometimes. "Serenity Now" (my name for the back yard) is certainly providing an environment to be creative. I love to watch him splash around in the bird bath, play with the corn in his sensory table and ring the wind chimes. Just seeing him thrive in the whole set-up makes me anxious to do more. If I find something that works, I add to it...we might be needing a fountain...better go to The Bird Garden.

I've figured out my obsession with decorating...it's a control thing. I feel so out of control of everything in my life. I work so hard with Jakob and my job but I don't always see results right away. Sometimes I never see results...it makes me nuts. With all the decorating, I get to be creative and I see the difference immediately. It makes me feel like I'm accomplishing something...in a way it inspires me to keep trying to accomplish other things. I need to feel that I can face a challenge and tackle it...especially if it's something I don't know a whole lot about it. Decorating definitely falls into that category. If I can make my house or my yard look "nice" (at least in my opinion), I feel capable of doing other things that I don't know much about. And I really try to do better than just "good enough". There's no worse feeling for me than failing...I was an A student (most of the time) and getting C's in some of life's biggest challenges is hard for me to accept. My home may never be in the pages of Better Homes and Gardens but I'd at least get an "A" for effort. I want to always get an "A" for effort when it comes to helping Jakob. I hope that makes sense...

We have our appointment with the DAN (Defeat Autism Now) doctor coming up and it will be a relief to get that ball rolling. I still haven't gotten in touch with anyone for ABA...I need to get on that. Sometimes I get overwhelmed by all the information and all the things I need to do that I lose focus on some of the things that are really important...like just enjoying Jakob. I haven't been spending as much time as I'd like just being with him. A lot of that has to do with Kenny being home all the time. It's nice to have Kenny around but I don't have the Mommy/Jakob time that I crave. He's going back to work soon and I should be able to get back into my routine. Granted, I'll be a lot more tired and and I won't get a lot of things done that I have time to do now, but I'll have that Mommy/Jakob time. I miss that. Right now, I feel like I deserve a "C" for Mommy/Jakob time...and because I've accomplished getting my back yard looking "nice", I have the confidence that I can get Mommy/Jakob time up to an "A" pretty easily...

-Jenn

Thursday, June 09, 2005

June 09, 2005

It's been a fun couple of weeks with Jakob. He's doing so great. We're in the middle of our second round of the Sensory Learning Program at the Therapy Learning Center in Lebanon. It did so much for him the first time around that we wanted to give it another shot. I cannot believe the results so far. He's riden a bike for the first time, he jumped off a platform with both feet, he's so much calmer and so much more "with us". Transitioning has become easier and I can tell he's understanding more of what I'm saying to him. His gross motor skills have improved, he's becoming a little more coordinated. It's amazing to witness some of those connections being made. Jakob is just so darn smart (and ornery) and I love to see so many doors opening for him.


There are so many " treatments" out there that it can get so overwhelming and confusing. I can honestly say that the Sensory Learning Program has made an incredible difference in Jakob. We definitely made the right choice and I would highly recommend it for any child with sensory integration issues.


My lastest project around the house has been the backyard. I've been spending a lot of time working on making it very "Jakob-friendly". I have this picture in my head what I want it to look like and what I want it to do. So far, everything is working out great. Jakob loves his trampoline and swing set. He runs back and forth on the deck and plays with his bubbles. He loves to watch the cardinals fly around and land on the bird feeders I've put out. He gets the biggest kick out of playing with the windchimes. He's hysterical to watch with the sand and water tables. I've put bird seed in the sand table and he just goes crazy with it. I've actually been able to keep him out there for 3 hours straight. That's unbelievable...the best part is he goes from one activity to another, never staying in one place for too long and no fits! He even takes me by the hand and pulls me into some of his activities. I love our back yard so much that I've even given it a name..."Serenity Now". Kinda silly but it's a Seinfeld reference and it makes me giggle. I only have a couple more things that I'd like to add...a couple of plants, a grown-up swing, something to attract hummingbirds and butterflies, tiki torches and a bird bath, I've found a new favorite store...the Bird Garden in Westchester. I'll be going there today and probably coming home with more than I went in for. And that's ok...it's all for "Serenity Now".


The spending money thing is still an issue. I agree that I'm spending more money than we have right now but I've decided that it's the right thing to do. I can always make more money, but I'll never get back ages 3-5. So I'm gonna do everything in my power to make these years as awesome and memorable as possible. I've been told more than once that the next few years are the most important for his development so my goal is to turn our home into a total learning environment for him. I've been really following my gut and I feel good about the decisions I've made so far. It's definitely like one of those credit card commercials..."a belly laugh from a 3 1/2-year-old with autism....priceless".


I continue to read and research. Like I said before...too much information, tough to decide what to try next. On July 7, we have an appointment with a DAN (Defeat Autism Now) doctor to discuss his diet. From the reading I've been doing, I won't be surprised if he has leaky gut or celiac disease. I feel the gluten free/casein free diet is in our future.


I think I'm keeping it together pretty well right now. I still have my moments and I still get overwhelmed. At least now I have a perfect place to go when I feel like I'm spinning out of control...I just head on out to "Serenity Now"...


-Jenn