Friday, February 10, 2006

February 10th, 2006

It always seems to happen like this and I'm not complaining. It seems every time I write an entry describing a challenge we're facing with Jakob, within a couple of days, he's so much better. Jakob and I have had the perfect night so far.

I was sitting on the couch and he was standing up watching tv. He walked over to me and rested his cheek on my chest and crawled up on my lap. I was holding him like women hold babies...I was cradling him. And as I looked at his face, I realized that I hadn't held him like that since he was an infant. Not because I haven't wanted to...but because he wouldn't let me. Once Jakob could move around, he'd wiggle his way out of my arms. He didn't like being held so he rarely was. It's hard to connect with a child who doesn't want anything to do with you. Tonight, my little buddy did something very sweet...he let me hold him like I've wanted to hold him for so long. There are little joys like that in every day and when I slow down, those little joys become big joys and my whole outlook on life changes. That's the power of a special child.

Things are gonna start getting a little crazy around here this week. My aunt, my other aunt, my parents, 3 dogs and a cat get here. It will be a full house. So, I've started a new project!! I'm turning the master bedroom into a suite...complete with a sitting area, a play area and a tv viewing area. Actually, I'm making it sound a lot fancier than what it will be. And honestly, I'm not sure yet what it's gonna be. All I know for sure is I want a big soft bed, a tv for Jakob, a tv for me, a sitting area and lots of stuff Jakob likes to play with. The bedroom will be a great place for Jakob and me (and Miller and Weiser) to go and just hang out. He loves the king-size bed with all the pillows and blankets. Having the bath tub nearby is a bonus too since he loves it in there. With all the chaos, I can't finish the room right now...but I sure can start coming up with ideas and doing something temporary that will work. It's good for me to have as many creative outlets as possible...gotta keep my mind occupied so I don't think too much about all the stuff that could make me want to curl up in the fetal position and wimper...(for the record, I really am holding it all together pretty well).


Thursday, February 09, 2006

February 9th, 2006

Wow. I'm gettin' my butt beat by a 4-year-old. It's sad, really. How did I get sooo old soooo fast??? My little buddy has been having a rough go of it. Lots goin' on...the double ear infection/strep throat thing started the whole snowball effect that has left us at the bottom of an avalance. That's one thing that parents of typical children sometimes don't get...when a child with autism gets a cold, we're dealing with a lot more than a runny nose and a cough. For Jakob, the illness made him crabby (understandably); he had to take anti-biotics and therefore wouldn't drink anything but water so he hasn't been taking any of his 20-some supplements which affects his digestive system and his sleeping patterns; and then of course, there's his schedule. No school, home all day, no ABA, no therapy...just home. Take your average case of cabin fever and multiply it by...oh, let's say...10,000??? Welcome to my world. Poor little guy...he's just all messed up.

The tough part, that will be with us forever, is the set-backs. I can't even count the number of people who have told me "2 steps forward and 1 step back". I'm not a fan of the 1 step back part. One step back means "hold on, we're goin' for a ride". I'm beat. Tonight, I'm letting him win as often as possible. "Wanna cookie, Jakob? Wanna watch a movie? Wanna run the bath tub for 2 hours straight just cuz?? Sure, kid. Whatever you want." RIght now, he's watching his favorite video while singing, jumping, crashing, running and throwing medium-sized objects at the windows. Luckily, he's not a very good shot. I sit quietly on the bed, observing and keeping my butt out of his way.

If there were a video camera in this house, the "Mommy/Turkey Butt Quality Time" would either entertain people or frighten them...

The other day, Jakob and I were in my bedroom and I was cleaning out some drawers. Miller, our elderly cocker spaniel, found a pair of underwear he liked and he was chewing on them. I didn't say a word. Jakob jumped up off the bed, ran over to Miller, ripped the underwear out of his mouth and handed them to me. I fell over. It's a good thing I'm able to remember those moments as he screams bloody murder for no apparent reason...

I have to constantly remind myself to slow down. That's all I really have to do. I feel so horrible for frustrating would it be to not feel well, be hungry or thirsty or tired and have no way of telling anyone? I cannot imagine how helpless that must make him feel. If I were him and I had all that drama goin' on in my world, I'd probably be a lot crankier that he's being. All that in mind, I cut him a little extra slack.

Perfect example...he now LOVES the tub. He wants a bath every night and I have no problem with that. The problem arises when he refuses to get out. He was in the tub for an hour last night. I finally coaxed him out with the jammies that he previously would not take off for four days. He hadn't seen those in awhile and he was mighty pleased. Sometimes, I have to pull out the big guns.

One other contributing factor might just the age of 4 years and 5 months...he's hitting the "terrible two's". Great. I thought we did that already...apparently not. In a lot of ways, Jakob was an awesome 2-year-old...he kept to himself, loved puzzles and videos...very low maitenence. It's funny how we mothers can rationalize any of our child's behaviors...or at least try to...for awhile...until we're forced to face it...and given the choice of how we want to handle it. It's quite a journey... and I'm only at the very beginning.

I would be lying if I ever said that any of this is easy...and it really hasn't gotten a whole lot easier along the way. Don't get me wrong, there have been huge improvemnets...HUGE. I know that and I am so very grateful to everyone who has helped Jakob, Kenny and me. We still have so very far to go and there's no end in sight. All I can do during these 1 step back periods is slow down, breathe and realize that no matter how hard these times are for me, it cannot compare to what he must be going through. With a lot of love, empathy and compassion, we'll get through it...together.