Tuesday, June 27, 2006

Jakob's Journal

Entry for June 22, 2006

Jakob is doing great...life is good. No complaints. He's been handling his very busy schedule beautifully. I'm quite impressed. We're doing something right...I'm not sure what, but it's right.

Jakob's been unusually interactive lately...he has lots of energy, he's laughing a lot and he's runnin' me ragged. We had quite the busy day yesterday. Our itinerary looked something like this:

Picked him up at camp at 4:15...home by 4:45. Lots of talking in the car and he was definitely making sure that I was going the right way.

As soon as we got home, he went straight to the trampoline in the living room where he jumped for a good 15 minutes.

Then he was in the mood for a bath. I played one of his favorite cd's while he was in the tub and we had a ball doing "head, shoulders, knees and toes".

Dinnertime...huge pile of macaroni and cheese.

He plays the piano, ya know. He's learning a new song..."Where is Thumkin?"...he's almost got it. So we practiced and he just loved all the praise...he's very talented.

TV time...Underwater Adventures was the video he chose. He really likes to watch his video, jump on the trampoline, sing, dance and play with a toy or two.

When the video was over, we went for a little stroll around the block...very nice walk. When we went outside, he went straight to the car thinking we were going for a ride. He sure gave me a big smile when he realized we were going for a walk. He likes to go for walks.

After his walk, we hung out...played with some toys, he jumped on his trampoline and we watched some tv.

He's just been a complete joy...in such a good mood, laughing a lot. I like it. I like it a lot.

But the best part of our day was going to bed. Jakob did something he's never done before. I went through his whole bedtime routine and I tucked him in, gave him a kiss and told him I loved him. When I turned to leave the room, he grabbed me and pulled me into the bed. He laid me down right where he wanted me (behind him in the "spoon" position)...he wanted me to snuggle with him. It was awesome. He's never been very big on anybody being in his space...and now he was putting me in the middle of one of his favorite spaces. I know so many parents who go through the phase with their kids not wanting to sleep alone. Jakob's never had a problem with that. When Jakob pulled me into the bed, it was one of those moments where I felt "typical". Too cool...too sweet. He's awesome. I love that kid...he's my baby.

Wednesday, June 14, 2006

Jakob's Journal

Entry for June 13, 2006

Today...when I picked him up from camp, I got a great parking place...right in front. I could see thru the door that they were doing circle time. There were 2 little guys standing at the door when we pulled in. A therapist redirected them back to circle time. Then, Jakob came to the door. His little eyes all red and swollen...so tired and ready to cry. He saw me and smiled...and when the therapist tried to get him to go back to the circle, I saw his little lips mouth "mama". I about lost it. It was sooooo sweet. I didn't care that it was 7 more minutes until camp was over for the day, I went in and kissed my kid. I'll never forget that sweet little face standing at the door, ready to go home after a long day at camp. It's so hard being 4...

By the way...the only reason I got the great parking place was because all the other mothers knew better than to park where their kids might see them...it disrupts the class...oops. Sorry.

Tuesday, June 13, 2006

Jakob's Journal

Entry for June 8, 2006

Jakob's summer schedule is off to a good start. He started an 11-week camp for kids with autism and so far, he's come home every day unscathed. He's been worn out but not miserable. That's awesome for the first week. It's been by-far the smoothest transition that I can remember.

There's only been one incident and I kinda saw it coming. I picked him up at camp early and drove directly to where he has physical therapy instead of home. After only going to and from camp 3 times...he already knew the route. When we didn't turn where we usually do, he knew it. Unreal. Grown-ups don't remember how to get places as well as my 4-year-old.

As soon as I went straight instead of right, he started to whine a little...but not bad. At that point, I thought we might have a shot of pulling this one off. But...as soon as we got to a place that he recognized and he realized that we came in a different way...the whining increased...not good but still manageable.

Into the parking lot at PT, he was still a little whiney. When I tried to get him out of the car, it was a big fat no-go. He kept trying to strap himself back into the carseat. Comical, really. He didn't want to go in. He was making that very clear without using any words. It wasn't tough to figure out. So...how did I get him out of the car??? I don't remember but I got him out.

Next challenge...get him through the parking lot and through the door. Good luck. I tried to sing...he let me know that he didn't give a crap about any monkeys jumping on a bed. If I tried to get close enough to get a good hold on him, he'd grab me and pull me to the door handle. So, I walked away...slowly, as he stomped his feet and whined. He'd turn his back to me, stomp, stomp, stomp, whine, then check to see if I was watching him. Typical kid-thing to do...very dramatic. But he was genuinely upset...very confused...that was definitely not his regular routine. We did something different and he didn't like it one bit. I felt bad that he was so upset, I wanted to keep him calm and happy but I didn't want to give into this one.

I walked through the door alone with one eye on the parking lot and I motioned to the receptionist. She saw me at the door alone and knew something was amiss. I said, "tell Christy we're here, but we're in the parking lot". Thank God for Super PT Christy...she came out in the stinkin' heat, on the blacktop and sat down with Jakob beside the car. He communicated to Christy that he would rather not participate in therapy today...rather emphatically. So she brought a trampoline to him...he thought about it, but decided against it. So I went inside to get one of his favorite toys. He saw the toy, ripped it out of my hands and pulled me to the car, all in one swift move. The kid is quick. So...all good ideas exhausted (didn't have fruit juice snacks or a cookie with me...those may have worked...poor planning on my part and I knew it), it was decision time. Do I: a) put him in the car and take him home or...b) pick him up and carry him through the door kicking and screaming? I chose option b . Rarely do I pick a battle but this time I felt I had to. I didn't want him to think that all he had to do to get out of therapy was kick and scream in the parking lot. No thank you. I figured...do it fast....scoop him up and run...get him through the door. The door would be obstacle number one. He tends to grab onto whatever he can in a doorway...the door, the wall, the frame...and he reaches with both hands and feet. It's like getting a couch with flailing appendiges through a narrow doorway. It's a trick.

It wasn't pretty but I got it done. Once inside, he still wasn't happy and we didn't get much accomplished. Christy managed to get him on the spinning board which he dealt with pretty well but that was it. We were done. We went home. Battle over...we both kinda won. I got him into therapy, he got to get back in the car.

This little incident could've been recipe for an ugly evening but I just followed his lead. We got home and he felt like chillin' out...we watched some tv, jumped on his tampoline and just hung out. I let him show me what he needed to do to pull himself together...he's gotten so good at self-regulating. Sometimes, he just wants to be alone. I get that. I sure need my alone time...so, I respected the kid and gave him his space. He fell asleep happy and we started from scratch the next morning. One day at a time...one incident at a time...

Wednesday, June 07, 2006

Jakob's Journal

(I'm smiling as I write this...as I sit in my Happy Place)

I'm not gonna get angry
Nothin's gonna make me mad
I'm gonna laugh no matter what
Not gonna get frustrated

That was funny.

Tuesday, June 06, 2006

Jakob's Journal: June 4th, 2006

Entry for June 4, 2006

I'm in my happy place..."Serenity Now"...great day yesterday, great morning this morning. He sat at the table for his breakfast, he hung out in my room, he jumped on his little tramp inside and his big one in the back yard, He's been singing and dancing. There's been some water and sand involved. He's been so happy, it's been so nice.

Ok...my job continues to become clearer to me...at home, I prepare him for a good day...whatever that day entails. If he's gonna be running all day...start out the day nice and calm. Ease him into it...try not to rush him unless you absolutely have to. Make sure he does all of the jumping he wants to do. If he doesn't wanna change his diaper right away...don't rush him. Do not force him to do anything that he doesn't feel like doing right now. Pick battles...and always show him respect. Respect the kid. I wouldn't want somebody constantly telling me what to do, bossing me around, making me do stuff before I was ready to...I wouldn't want somebody messin' with my tv or turning off the stereo if I was listening to my favorite song. Jakob has to have a place where as often as possible, he gets his way. I know the difference between being a booger and being rotten. Jakob isn't rotten. If he's doing something rotten, it's out of frustration that he can't communicate what his needs are. If he's screaming uncontrollably, it's because he's losing his mind...it's the same way I feel when I can't get someone to understand me. How would I feel if the entire world didn't understand me??? That's why it is my job to be the safe place for Jakob. He will always be understood by me. His needs always come first. When I do that...everybody wins. I make his life easier...and in return, my life is easier. It's peace, love and laughter, baby! And who wouldn't wanna live like that???

Monday, June 05, 2006

June 1st, 2006

Get him to his happy place...that's what my gut has been telling me for months. I'm starting to listen to it.

In his happy place, he sings, dances, self-regulates like nobody's business, imitates everything...sounds and motion.

Get him to his happy place and he shouts the "g-o" in BINGO...and imitates every dance move in "She'll Be Comin' Round the Mountain" (which was one of my childhood favorites...ask my Dad).

He's a riot. Nothing rattles him...he goes with the flow and most importantly, he's happy.

Find Happy Place.

Go there.

As often as possible...

I have a happy place...I think everybody does to some degree. I mean, it makes sense ...in order for me to be in my happy place, I have to take a shower, wash my hair, my skin needs to be pretty clear, I have to do my hair and make-up, wear a cute outfit that I feel thin in, and of course, cute accessories...shoes, jewlery, purse. My skin must all be hair-free and moisturized. And I must have coffee....lots of cream and sugar. That's just the prep required to go to my happy place. The small details affect me...if I feel really fat on a particular day, I'm "off" that day. So I can understand if Jakob's day gets thrown off by not being able to jump on his trampoline before he goes to school.

I find the more I watch Jakob, the more I learn about all of his different quirks. And if he's allowed to be himself and do "his thing", he will arrive at his happy place. Some of "his things" are jumping, eating cookies, music (different kinds on different days at different times dependent on the situation), the bath, the back yard...sand, water, trampoline and slide, fruit juice snacks, running a few sprints, bouncing on a therapy ball, bubbles and a couple hot dogs. The trick is to figure out what he needs at what time...and that changes day-to-day. So I watch and try different stuff that I know are on his list of "happy things".

The road that I chose back when all this first started was to try as much as possible...try anything I thought might work. If he showed an interest in building blocks, I bought every kind of building block I could find...animal ones and vehicle ones, different colors, shapes, sizes...some played music, some spun around ...I probably own a couple of garbage sacks of blocks. And that's just blocks...don't get me started on puzzles, books, balls, pillows, games, art supplies, dollhouses, firetrucks, cars, trains, DVD's and videos, tv's, DVD players...a swingset, fence, therapy room, therapy equipment...the list goes on.

When it's all added up...it's a potential downward spiral. I really lost my mind for a little while. Don't get me wrong...I don't have buyer's remorse on anything I bought for Jakob...I just probably could've found it cheaper. But I was in a hurry and I didn't have the time to shop around. I paid for convenience. Now my shopping must cease for awhile...sad day...no new handbags. No new nothin'. I'm not panicking yet...I think I'll be ok. Best put...if I continue at the same pace that I've been travelling, I'd lose the house within a year...so, it's time. Time to stop...well, almost. I think I need to get one more little thing...a sign for my house that says "Start where you are, Use what you have, Do what you can, It will be enough"...really, it is time.

Jakob has reminded me this past week of an important lesson... we both have to have love and laughter. What's by far the most important necessity for me to get to my happy place is...love and laughter...lots of both. If I go to bed at night and I spent the day laughing with Jakob and gettin' lots of Jakob hugs...I know I had a great day.

I've been trying to think of people I know who live under that mantra (love and laugh) and do it succesfully every day (I know a lot that try but not many that succeed). My parents are amazing at it. It's become more and more obvious to me the more I watch them with Jakob. They're awesome...there are no words to accurately describe it. I love them and their examples so much. I'm gonna get a bracelet that reads "WWM&DD (What Would Mom and Dad Do)...maybe two strands...one with WWMD and one with WWDD. I like that idea...could make me millions (please don't steal it...I could use the money).

Other than Mom and Dad, there are really only a couple of people I knew really well when I was younger that were big into love and laughter...and I haven't been close to them in awhile. I've heard that they've had some rough times...I hope their personal tortures are over and they've found peace...and a little love and laughter. They certainly had their happy places...they just weren't sure which roads to take to get there. They're a little slow at reading maps...just like me. Every once in awhile, I think about my old friends and I wonder how they'd get along with Jakob. I think they'd get along beautifully...love and laughter people "get" Jakob. Problem is...I need to find people that successfully love and laugh every day...with no drama. Peace needs to be on that list too. Add peace. Thanks.

Peace, Love and Laughter. Gotta get a tatoo. I've had one idea that I really kinda like...it's on the ankle, it's pretty, feminine, very colorful...striking if you will...a definite conversation starter...I need a good artist to make a design that somehow means "Autism Mom"...I want it to be something people will see and compliment me on...it will force people to ask a question that leads into a lesson in autism. And even if nobody ever asks...I like it because I'm proud to be a mom who has a child who has autism. I'm proud of his ability to find peace, love and laughter...it's taken us a long time to get to here...and we have a long way to go, but I like what I'm seeing.

The best way for me to stay in my happy place is to not let anything bother me...not snotty remarks, dirty looks, being ignored or dismissed. I cannot control what anyone says or does...all I can control is how I react to it. So, I'm going to try to react to everything with at least a little bit of love and laughter. I'm gonna laugh no matter how hard I want to cry or how badly I want to scream. Attitude is everything. I'm not gonna get angry. I will not be easily frustrated. Smiles...lots of them. But I do think I'll keep up the breathing exercises...just to be safe.

It seems that my happy place is a lot like Jakob's happy place. Whew...that makes this easier. Find my happy place...find Jakob's...nice.

Jakob's Happy Place...I swear I've tried to find it for soooooooo long. The beauty of it all is finally, after all this time and all this thought and all this total change in our lives...I feel like it was all worth it. I was tortured during this search.

I'm not sure why this all feels like such and epiphany for me, but it does. An Oprah "A-ha" moment. I swear, it sounds cliche, but it's like I've been gathering all these puzzle pieces and now I have enough of them to start trying to put them together. I'm trying and it seems to be working. Time to breathe, even if it's just for a moment.

I'm sure there's at least one therapist and one mom (at least) that are saying to me right now "Jenn, you pain in the butt, I've been telling you all this for years...but you wouldn't listen"...and they might be right. Maybe.

But what I think I've realized is...this is a journey and there's no map. No concrete directions anywhere. I can look at some pictures of where I want to or need to go...but I have to figure out on my own how to get there. A lot of turns have been taken...interstates and backroads...engine trouble...a couple fender-benders...nasty weather...some good flights with only minor turbulance...a delay or two on the tarmack...a flat tire...and tons of motion sickness. It's been quite a trip and right now, I feel like I've found Hawaii...