Tuesday, August 16, 2005

August 16th, 2005

Remember everything I wrote in the last entry...well, nevermind all that. I'm not sure what all I wrote, I just know it was all good. It's been a little rough the past couple of days. I've seen meldowns unlike any that I've seen in quite some time. It's been pretty ugly. The one positive is I think I've learned better how to handle Jakob's total loss of control. Talk about patience...I may have just set a record for the woman with the most patience ever. Between Jeff in the morning, Kenny mid-afternoon, Jakob late afternoon and evening and back to Kenny at night, it's amazing that I haven't had to call the guys with the tight white jackets. Or at least begged my doctor to up my medication...

It started last night when I poisoned my kid. To say that Jakob is a picky eater would be an understatement. Currently, there are fewer than 8 total foods that he's willing to eat. He won't even look at anything he hasn't seen before. He knows. He likes the cheese sandwich Ritz crackers...don't even try to give him the ones with peanut butter...even though he used to love those. If one of his plain Ritz crackers is cracked or has a little chip in it, it's no good either. If it ain't the pudding with the silver foil lid, it's not happening. Eating is a challenge to say the least. We know we're safe with yogurt bars, regular Ritz crackers, cheese sandwich Ritz, fruit juice snacks, hot dogs, bananas and vanilla pudding. There are a few sometimes foods...but he hasn't touched any of those in a while.

Well last night, I thought I had a brilliant idea. He used to LOVE Easy Mac but stopped eating it about 2 months ago. I made up a batch to see if he'd have any interest. He ate the whole darn bowl...one noodle at a time with his fingers...and he was loving life. Now I knew that Easy Mac would not make the cut if we have to go gluten/casein free but I was more interested to see if he would eat something that he used to like. Dumb move. Really dumb move. I now have no doubt that Jakob has some pretty significant dietary issues. Within 10 minutes, he was a different kid. It was almost like he was drunk...he was a little wobbly when he walked, he was pissed off and nothing made him happy, I couldn't get him to transition smoothly and he had trouble focusing. It was not a party. When I tried to put him to bed at 10:00, he just curled up in the fetal position and wanted me to hold his tummy. It was pretty obvious that he wasn't feeling very well. So I laid there with him until he was really close to falling asleep. After his video was over and I was laying in my own bed, I started hearing noises...he was up, with the light on, fighting with this little flashlight of his. The flashlight wasn't doing what he wanted it to and he was quite upset. It took me more than a couple of minutes to distract him long enough to put the flashlight in the hallway and those were an ugly few minutes. After about 20 minutes of just trying to calm him down, he curled up on his bed with me. He was so exhausted...poor little buddy. He fell asleep with me holding his belly at about 11:00. Talk about a long night...and it was all my fault with that darn Easy Mac. I plan on ceremoniously burning the entire box of Easy Mac in Serenity Now while I vow to never do that to him again.

Since I didn't get much sleep last night, when I got home today it was naptime. I was out cold and I started to hear these blood-curdling screams. When I came down the stairs after about 15 minutes of hollering, he was beyond reach. He had been up since 5 in the morning, he was tired and he was mad at the DVD player. He wanted to watch a particular DVD (Baby Monet) and the DVD player wasn't working right. The thing gets so much use and we've had it for 2 years...it's about to go. Sometimes the door doesn't wanna open or it will freeze up. I know a couple of tricks to get it working again so I gave it a shot...that helped a little...until the DVD started to play. Jakob likes to put the DVDs in the player himself...over time, he scratches them up pretty good. Well, Baby Monet has about had it and it started to freeze...it sent him over the edge and there was no fixing that. He rewound it and it froze again, I fast forwarded and it skipped some of his favorite parts. Like I said, we lost him and there was no turning back. It took a while, but the video started to work right, he snuggled up on my lap, ate a yogurt bar and fell asleep.

I keep thinking that I've accepted that this is all part of the autism...this is just how it's gonna be and I have to deal with it. Every time I think I have it handled, we have an incident. The incident always slaps me back into reality...yeah, he's getting better in so many ways...but he still has autism and this is going to happen. There's not much I can do to prevent it...I just have to stay calm and deal as best as I can. I do have to say that I have handled the past 2 incidents with complete calm. I hate that he has to go through all this drama...but he can't help it. All I can do is make it as easy as possible on him which in turn makes it easier on me and whoever else is in the room. I'm all for easy since so much in life isn't.

I think the trick that all parents of children with autism eventually learn is to focus on the positive things that are happening. You have to learn from the "hard to handle" situations but focus on the positive. It's tough to do since the "hard to handle" is so emotionally draining. It can suck all the life right out of you....quickly. But I have to say that there's nothing in the world like laughing with Jakob. He and I have spent more time laughing than he's spent screaming the past few days.

Jakob has developed a fascination with my king-size bed. He could hang out there all day if I'd let him. He jumps, he crashes, he rolls around, he does bellyflops, he sings, stomps his feet and giggles like crazy. By far, his favorite thing to do is get a running start from the hallway and crash into the bed. We've turned it into a little game where I say "ready...set...go" and he takes off squealing the whole way and then plops on the bed. He won't start running until I say the "ready...set...go" part and I won't say that until I get him to do something I want him to do. I usually ask him to clap his hands, pat his head or touch his nose. I've really been working on the touching his nose one and he's getting so darn close. Only one problem...he tends to miss his nose and poke himself in the eye. And he doesn't just poke himself once...he does it over and over. His poor little left eye was all red yesterday...I hope he finds his nose soon...I'm confident that he will.

Serenity Now continues to be a hit...he's totally into the garden hopscotch. He's even trying to say the numbers himself as he steps on them. I know that I've said that I'm done with the back yard for the year but...I have one more idea that I don't know if I can wait on. Since the Garden Hopscotch is sooooo cool, I think I need to do a Garden Alphabet too. I have the perfect spot for it and since I got my feet wet with the hopscotch, I figure the alphabet won't be too hard. The big difference will be there are 26 letters where I only had 10 numbers...a little bit bigger of a project but since I know that Jakob would dig it, I don't really care if it's a lot of work. He's so worth it. (I gotta get Rachel back...btw...I'm still fielding offers for her...kindergarten/first grade special ed teacher...big salary with an easy commute from Mason preferred).

For the next week, I'm just gonna try to enjoy Jakob as much as possible. I wanna hang out, play, snuggle and do anything he wants to do. Next week is the beginning of a new existence and I have no idea how it's gonna go...ABA, DAN doctor, school, Kenny back to work...I think it's all good but ya never know. It could be rough and I wanna be prepared. A lot of napping would be beneficial for everyone involved...I'm not gonna have much time for that though...I have 26 letters worth of painting to get done...


Wednesday, August 10, 2005

August 10th, 2005

Life is pretty darn good. As of right this very second, I don't have many complaints...shocker. I actually feel pretty perky, a week of vacation that included a solo trip certainly helped. But my good mood is mostly due to the fact that Jakob is doing so incredibly well. I've been watching in awe of how much he's changing every day. He just keeps getting better and better. This is the most hopeful I've felt in a while. It's amazing how much better I feel when I have hope...hope is a beautiful thing...(I gotta go shopping, I don't have a sign that says "HOPE"...)

Everything is happening fast and it's hard to keep up. Kenny's niece (and mine) has been here for a couple of weeks. She's a special ed teacher for kindergarten and first grade in Jersey. Rachel made the trip just so she could help us with Jakob and having the extra set of hands has been wonderful. Jakob just loves her and she's sooooo good with him. There are some people that walk into our house that Jakob just ignores or tolerates and then there are some that he's drawn to...and he couldn't be more drawn to Rachel. She literally works with him every minute he's awake...and she never seems to get tired. How in the world she does it, I have no clue. She has him laughing non-stop and he's learning so much from her. I love just watching them together...it's very sweet. I gotta find her a job here...know anybody looking for a KG-1st Grade Special Ed teacher???? I HIGHLY recommend her. She can start in two weeks. (Would prefer an easy commute from Mason but willing to consider all offers...)

Rachel's visit was just the kick-off of "Operation Recovery...Jakob Full Speed Ahead" (I just made that up...not bad). We have an ABA in-home program ready to start August 22, we get the results from the DAN doctor and start preparing for the dietary changes if necessary on August 24, school starts August 31 and Jakob's 4th birthday is September 3...(gotta plan a party...a big one). The train has left the station and we are full speed ahead. I know that it seems like a lot...it may be too much. I'm not sure, I'm just following my gut. My gut told me to stagger all this stuff and Jakob could carry the load...easily. By Thanksgiving, we might be on a serious roll. If we're not a roll and my gut was wrong, then we go to Plan B. Not sure what Plan B is yet... but I'm working on it.

I'm still working on that darn "Serenity Now". It's been little warm lately...not exacty the best time of the year to be working in the yard. Now I understand why normal people do all their planting in the spring and fall. Lesson learned. I have one more project to finish and I'm getting pretty close. We've named it "Jakob's Garden Hopscotch" and that's exactly what it is. If it weren't for Rachel, I wouldn't have gotten it done until Christmas (hire her, pay her lots of money, please). It's kinda hard to explain...we painted hopscotch on some big garden stones and lined them up in a berm. Someday...I'll attach a picture. Anyway...it's so very cool and I'm so very proud of our hard work. And of course, what thrills us most is Jakob loves it. He goes from one to ten stepping onto each stone. He'll stop on each number, look at us and wait for us to say the number on the stone before he'll go to the next one. If we don't say it fast enough, he lets us know with a dirty look and a disgusted "mmm". Sometimes, just for kicks, I'll say "7" when he's on "4"...I get the same annoyed reaction. It's too funny. Jakob's too funny. And just so darn adorable.

The best way to describe the past couple of weeks is that I feel a huge weight has been lifted off my shoulders. For the first time in as long as I can remember, I see a light at the end of the tunnel. I'm not feeling quite so overwhelmed...knowing that there can be no question about it...I am doing everything I possibly can for my son. I have hope for recovery, even though I know what the odds are. I have hope with no expectations. All I can do is what I can do...and I'm doin' it. Whatever happens, recovery or no improvement whatsoever, what's still the most important thing to me is Jakob's happiness. And right now, he's the happiest I've ever seen him. Now instead of doing my "breathing exercises", I'm letting out sighs of relief. It's really nice.