Tuesday, July 26, 2005

July 26th, 2005

Ok...I'm sitting here fuming right now and I have to vent for a moment...when are people going to learn that it's not funny to make fun of kids with disabilities?? Mocking, mimicking and "going Rainman" are not amusing to me. Am I being overly-sensitive? Some may say "yes"...I say absolutely not. When someone makes a crack about ANY child with a disability, that someone is making a crack about my son. The thought of anyone making fun of Jakob, to his face or behind his back, sends me over the edge. I can't handle it. I do believe that "political correctness" as a whole is out of control...but one area that you can never be too politically correct is when it comes to kids. Leave them alone. Let them be happy. Celebrate their differences...don't laugh at them. It's a horribly mean thing to do...

I'm breathing...I'll be fine in a minute...

Jakob and I are both on a clumsy kick. If there's an injury to be had, one of us will have it. In the past week, Jakob has fallen down the stairs, hit his head several times in several different places, slipped down a step ladder, cut his big toe and his leg and he has a few mysterious bruises. Poor kid. He's a mess. The weird part of all of this bad luck is that it's a good thing...the reason he's getting hurt so much is he's becoming more adventurous and brave. He's trying things that he's never tried before and that part of it is awesome. We're just entering all these unchartered waters and I've had to start "hovering" again so I can protect him from himself. Considering all the recent bumps and bruises, I need to step it up a couple of notches.

I'm looking at bikes for the little booger. After months of coaxing, he's starting to ride the bike at physical therapy. I'm a Schwinn girl...always have been. I just have to figure out what size to get and where I can buy it. One thing I know for sure...I don't wanna have to put it together...

Last night, Jakob and I had some real "Jakob/Mommy time". He makes me laugh more than anyone ever has. His fascination with the hose continues...he watered the steps on his swingset, the deck and several different spots on the lawn. He concentates so hard on what he's doing...very intense. I think we may very well have a little gardener on our hands. I'm working on getting him to water the plants...we're getting there. He gladly fills up the watering cans and dumps them over...just gotta get him to dump them over on the flowers. He's picking things up really quickly so I don't think it's going to be too tough. I just love it...I'm giggling right now just picturing him tugging on that hose...trying so hard to get it to reach the little bird bath in the back of the yard by the swing...the water bill is gonna be insane but I don't care.

Our back yard is definitely a place where kids get dirty...and wet. I've warned parents in Pleasantville that if their kids come to my house, they'll probably be leaving a mess...wet and covered in grass, dirt, sand, bubble juice and whatever else they can find. I remember being a kid...if I was filthy, I was having fun. If I was having fun, I was happy. I have a new sign for the house, it says "A Happy Childhood Lasts Forever"...

I really am about done with back yard projects...I mean it. (At least done for summer, I may come up with something to do in the fall...at least cornstalks and mums and pumpkins...) I have one more thing to finish. I have to plant some willows and I've started a little art project. I'm venturing into a territory that I know very little about...painting. Artsy-fartsy painting. I have some pavers and I'm painting numbers and pictures on them to make hopscotch. Jakob loves his numbers so I've decided to incorporate some in the landscaping. It should be interesting...

I'm suffering from an all-over burn-out. My brain isn't functioning as it should. I'm having a difficult time focusing. It's been too long since I've had a vacation. Thank goodness we're taking next week off. Hopefully I'll be able to pull it back together so I can get some things accomplished. Organizing some things is on my list of things to do but hanging with Jakob is my #1 priority. I miss him.

He's been in a big boy bed for about two weeks now and the transition has been going ok...he does love the freedom. Last night was sweet. I put him down with a video on. He was talking up a storm and laughing like crazy...even after the video was over. Then I started to hear some banging...so I had to go check it out. He was rolling his sippy cup off the front end of the bed (the bed is shaped like a car so he was rolling it off the hood). I tried to explain to him that it was time to go to sleep but he wasn't hearing it (it was 10:50)...so I put another video on and climbed into the bed with him. He'd sit with me for a minute, then he'd get up and read a book. He'd snuggle up with me, then go play with a toy. This went on for at least a half an hour. He finally crapped out around 11:45 with his legs wrapped around mine. It wasn't easy sneaking out of his room...it's a good thing I didn't fall asleep with him, I never would've woken up for work.

There's just so much happening right now...

For the first time, Jakob took off all his clothes and his diaper. He was standing there naked with the shower door open. He used to hate the shower, now he loves it and wants to go in it all the time.

He was playing in the basement with some of the neighborhood kids and they swear he said "no".

At OT, he wrote his name for the first time. He did really good with "o" and "b"!

We've finished all the tests with the DAN doctor...drawing blood was not fun. Poor little guy, it was pretty traumatic. The results will be back right about the time he goes back to school.

Kenny's niece who teaches grade school special ed is coming to stay with us for a couple weeks to help out...she's great and Jakob loves her. It will be so nice having her around.

Someone from Applied Behavioral Services is coming to the house this week to observe Jakob so she she can set up an at-home ABA program for him. We're gonna try to have something in place in the next couple of weeks.

I feel like I'm forgetting something...I probably am. Maybe I'll remember later...

Oh! I got it...since I know better than to even bring up getting a cleaning lady, I've started hiring out kids in the neighborhood to do little things around the house for me...I'm getting my birds fed 3 times per week for 5 bucks...it's a start...

It seems I have a good start on a bunch of things...now I just need to finish. I sure would like to feel like I got some things accomplished. My vacation won't exactly feel like a trip to Bora Bora but it sure will be nice.


Monday, July 18, 2005

July 18th, 2005

Here's the quick run-down...we're waiting for test results with the DAN doctor so we can start the diet, Jakob's in a big boy bed, he's trying so hard to talk, he sat and watched baseball with Kenny and he's totally in love with the garden hose. I know there's more but I'm drawing a blank. So many things happen that I say to myself "ya gotta put that in the journal" and then I forget. I try to make lists but we all know how brilliant I am at organization...I'm still working on that. The other obstacle that I've been facing is whenever I seem to have the time to write, I'm frustrated or irritated and just not in the right frame of mind. I don't want every entry in this journal to be whiney...all focused on "how hard this is" or "how tired I am". But just for the record...this is hard and I'm tired.

The DAN doctor was pretty interesting. I learned a lot about the theories behind vaccinations causing or at least contributing to autism. I got lots of information on dietary issues and how they can affect the neurogical system. Scary stuff. The doctor we saw is obviously extremely bright...lots of degrees and very passionate about her work. Everything she said made sense. I'm not at a point where I can accurately explain everything she told us...I understand it but I'm not ready to explain it to anyone else. A little more studying is required on my part...I'm working on that. I have a reading assignment...another book. It's funny...I did so much reading in college that I swore off books after I graduated. Back to the educational grind after all these years. Oh well, I always enjoyed learning new things, just never thought I'd find myself researching anything to do with nutrition. Me and nutrition?? Please. Give me an extra value meal and a diet coke. But for Jakob, I'll give anything a shot. We're still in the process of collecting urine and blood samples for the tests. Once that's done, it'll be a while before we get the results. We have another appointment the end of August...hopefully, we'll have the results and we can start making the big changes in his diet. We're nervous about that transition.

It seems everything that Jakob eats will pretty much be eliminated...cheese, crackers, cheese crackers, yogurt bars, cereal...all of it. It's gonna be ugly and I'm not looking forward to the fighting. And it will be a huge fight. I can't even remember the last time he tried something new. We offer him things all the time but he has absolutely no interest. I'm not sure he even realizes when he's hungry.

I continue to do things to "Serenity Now"...and I'm having a tough time getting Kenny to understand why I'm so obsessed with the back yard. I will admit...I have probably spent more money than I should have, certainly more money than we have. The credit cards have been getting used a lot. I don't like having debt any more than anyone else does. I'm just trying to follow my gut. My gut is telling me that there's something clicking with Jakob when he's outside and after watching him last night, I think my gut has been leading me in the right direction.

I sat and watched him go to the trampoline, to the slide, to the fountain, to the birdbath, to playing with the hose, to the water table, to the sensory table, to the spinning thingies, to bubbles, to walking on the pavers. I almost cried when he was sitting in the rocks and playing with the fountain. I put so much thought into picking out those rocks and that fountain...trying to find the perfect set-up for Jakob. To see him throwing the rocks into the fountain and then pulling them out one at a time and laughing like crazy...I know I got it right and it was "priceless". There is nothing on this earth as precious as Jakob's laughter...and the more laughter, the better.

Jakob also has an intense side...I can tell when he's really concentrating on what he's doing. The garden hose is one of my favorite "intense" activities. He pulls and pulls on it until he gets it over to his water table. He will manuver that hose until he gets right where he wants it and he will proceed to fill up the table. When it's almost full, he'll drag the hose over to this one spot by the fountain. It's a spot where there's no grass, just dirt. He stands over it and waters it. It's hysterical. I think I might have myself a gardener in training!! He may just be a natural...I'm gonna get him a couple plants of his own to water (or drown).

Everything we try with Jakob is a crap shoot. We never know for sure what's gonna work. Only recently have I begun to feel that I "know" my son. I think I've gotten a pretty good handle on what he does and doesn't like, what he'll react positively to and what he won't like at all. I have to constantly remind myself that I am Jakob's mother...I know him better than anyone. It's my gut that I have to listen to and trust. That's all I'm trying to do...have the confidence to trust my gut.


Friday, July 08, 2005

July 8th, 2005

Wow. Where to start? Crazy couple of weeks. You'd think after all this time that I would adjust to the craziness and just accept it as normal, but that hasn't happened yet.

We finished round 2 of the Sensory Learning Program and the results have been encouraging. Jakob has definitely made some significant improvements in his comprehension and attention span, his balance is so much better and he's so much more receptive. To put it simply...he's not just in the same room as we are...he's "with us"...there's a definite connection that hasn't always been there.

Probably the funniest thing that Jakob has started to do is take off his diaper. He's finally starting to notice that there's something going on down there. One day while I was outside killing poison ivy, Jakob removed his really messy diaper and started to jump up and down in it. What a disaster...it was all over him, all over the floor, all over everywhere. Kenny had to move quickly. I felt so guilty that I was unable to assist him...(not really).

I hope the taking the diaper off thing is a sign that we're getting closer to potty training...I've heard too many stories of 25-year-olds with autism who are still in diapers...that scares me.

"Serenity Now" is coming along nicely. I've added a swing, a fountain, a couple more birdbaths and some more flowers. Jakob loves it. He was up late the other night and was going crazy outside with the tiki torches. He kept going back and forth between the water table, the sprinkler and the torches. He was laughing and running around...it was awesome to watch. All the work (and money) has been worth it.

Life in the back yard has been going a lot better than life indoors. He's started being a real booger with the tv again. It's frightening how bright he is. He has the whole tv and dvd player thing figured out. He can work our electronics better than we can. He turns the tv on, puts in a dvd, changes the input on the tv so he can watch the dvd, turns the volume up, fast forwards and rewinds...it's insane. The kicker is...he hides the remotes from us so we have to actually get up off our butts to change the channel back. He laughs at us.

He also gets a real kick out of going up to our bedroom and slamming dresser drawers. Slam. Slam. Slam. He knows that we'll go up there and as soon as he sees us coming, he runs and jumps on the bed. Of course he's grinning the whole time...so ornery. Sometime in the near future, we're gonna tape up the tv so he can't get to the buttons and we're gonna put a lock on our bedroom doors. What's that old saying...an ounce of prevention...?

Another big challenge is getting enough "alone time" with Jakob. Jakob and I have a certain afternoon/evening routine that we both really enjoy. We haven't done this routine in weeks. I really miss it. It's a quiet, calm routine that lasts for hours. Not having that routine in place is messsing with both of us. Hopefully our schedule will get back to "normal" soon.

We've started the whole process of changing his diet. We met with the DAN doctor yesterday and we're going to start the testing next week. Luckily, the testing only involves urine, blood and stool. Pretty basic but the results could tell us a lot. Kenny is extra-terrified of the gluten-free/casein-free diet. Jakob only eats about 10 things and almost all of them will have to be eliminated. It will be hard on all of us, especially Jakob since he won't understand what's going on. It will be ugly but if it helps him, it will be worth it.

My best friend and her 2 kids along with my Mom are coming this weekend. I can't wait to see how Jakob does with her 5-year-old son. He's a great kid...so smart. I'm sure I'll be able to show him some sign language and he'll have a ball with Jakob in the back yard. I've been looking forward to them coming for a visit, it's been too long since they've been here. They need to move in...

I really feel like I've been chasing my tail lately and not getting done everything I need to get done. I try not to beat myself up too much...there's only so much time in the day and I can only do so much. It's still frustrating though...I catch myself getting cranky from the stress. I need more time in "Serenity Now"...