May 30th, 2006

Water is sooooooooo much fun. Water in the tub, water in the water table on the deck, water on the tube slide, water all over the swingset, water in the fountain...Jakob likes water. Kinda scares me a little. I've heard too many stories about children with autism drowning. Gotta watch him every second.

Slight change in Jakob's schedule this week...no school. That's actually a HUGE change for him and he didn't handle it too well the first day. He was at his Dad's and according to Kenny, at the exact time he usually goes to school, he put on his shoes. So, Kenny tried to take him to the park that's close to the school. As soon as Jakob realized they were going a different direction than the school, it all went south. Not pretty from what I hear. All I know is he ended coming to my house and doing a lot of jumping. Apparently, Day 2 without school went much better. Hopefully, he'll adjust quickly to the new schedule. Poor thing....we just keep throwing curve balls at him.

Jakob and I have been having some great moments. He's just so much fun to play with (when he actually lets me touch his toys...I keep telling him that if there's anyone he should share his stuff with, it should be me since I paid for all of it). I've been able to pull out some of the toys that I had to put away because he was stimming too much. We've been having a lot of fun with marbles and bubbles. But definitely, the big winners are water and his Baby Genuis Favorite Nursery Rhymes DVD. Between "BINGO" and "Five Little Monkeys", it's been quite a party around here. We crank up the stereo and sing like nobody's listening and dance like nobody's watching. It's scary how easily I can get in touch with my inner child. I'm sure it has something to do with my being an only child...lots of time playing alone can foster quite an imagination.

I've decided what I wanna do when I win Powerball. I'm gonna buy a huge piece of property that I will build no more than 50 home on...all to be occupied by families living with ASD. Everybody knows everybody and everybody understands. We watch out for each other's kids and we help each other out. If I win really big money, I'll build a couple of apartment/townhome complexes for adults on the spectrum who could live alone with a little help. It could be a big, happy, safe, gated community. I've already picked out the families I want living right next door to me. I have lots of ideas for playground areas and a pool...and of course, landscaping.

I try so hard not to dwell on the tough stuff but it's impossible not to notice it when we're out. The older he gets, the more funny looks we get. I hate it. I just hate it. My maternal instinct to protect goes into overdrive and I just wanna keep him home, safe and warm, surrounded by things that make him happy. Unrealistic...but instinctual.

What I think all of us autism moms go through is a phase where we want to try to have a "normal" life...and do all the things that moms with typical kids do. And the longer we're in this, the more we realize that it's just not possible. Every time I try to be "normal", I just get reminded how different we are. I find that I'm most comfortable around other people who can relate...other moms in the same boat as me. I love my autism moms. I love that my autism moms look at Jakob and just see Jakob. They don't jump at his behaviors, they're not scared of him, they know what to do with him. They hug him and give him high fives. They laugh at the same things I do. Being surrounded by people who get it makes it not seem so hard. That's why I gotta win Powerball...

May 19th, 2006

I had the most wonderful night last night. I was invited to say a few words at the Kindervelt Annual Meeting where they inducted the new president and board and presented a check to Children's Hospital's Division of Develpomental and Behavioral Pediatrics..(where Jakob goes)

Sitting in that room and standing in front of those awesome women, I remembered the Autism Every Day video...and wow, I felt at home. In this room sat a whole lotta moms, most with typical kids, a few like me but all with an unconditional love for children. Not only do they take care of their own kids, they take a lot of time out of their lives helping other people's kids. And to be in that room with these classy ladies and know that each and every one of them can, at least to some degree, understand my life.........it was nice. Really nice.

I met a couple of autism moms and even Jakob's art teacher (who he'll have in kindergarten next year). One mom...who I've been told at least 23 times that I needed to meet...was there. What a doll. No lie...I walked up to her and she immediately put an autism awareness necklace and bracelet on me. She had made them herself...too sweet. She was something...so positive, so energetic, so funny. Her daughter is older than Jakob so she's been doing this for a lot longer than me. She gave me hope...hope for Jakob and a little hope for me. If her daughter can do so well and improve so much that this mom has time to take care of herself...then maybe, I can pull it off too. Honey, if you're reading this...thank you for being so strong and giving us newer moms hope. God knows, one thing we autism moms must always have is hope...

So anyway...

I was hoping that I could just bask in the warmth of last night for a few days...but no luck. The everyday stresses hit me smack in the face this morning. I still have hope...but I do feel a little beat up. I really did it this time and I just hope I can fix it. I think I can...I hope, I hope, I hope...I've thought about writing about my potential downward spiral...I just haven't figured out what to say yet...I'm working on it and I'll write about it soon...just not quite yet...

Thank goodness that over the emotional few days I've had, Jakob's been great. He's laughing, he's happy, he's definitely energentic and entertainly onery. There have only been a few squeals of disagreement or defiance and maybe 1 or 2 meltdowns...a big improvement. I'm still seeing some stimming behaviors but not as many and he's doing fewer sensory seeking activities...like chewing and crashing. All of his therapies are going well...he's been very cooperative. He sure could use some OT though (hint, hint, JA)...

Jakob is almost out of school for the summer and it will be interesting to see how he'll handle the change in his schedule...I'm hopeful that all will go ok...very hopeful.

May 17th, 2006

I'm sitting in "Serenity Now" watching Jakob make a mess. There's really nothing I can do about it unless I want a big fight so I'm just letting him go. He's stimming a little but it's not excessive. It's the sandbox...the sandbox that he has ignored for 2 summers has suddenly become his number one priority in the backyard. It's awesome that he's now tolerating the sand...sand used to be one of those sensory things...he wanted no part of it. Now it doesn't bother him a bit. He doesn't mind it on his hands, feet, in his hair or down his pants. He doesn't even mind it if it's wet. After this afternoon, I know that I don't mind it any of those places either...the booger nailed me with several handfuls of it...on my head. Right now, he's on his knees hurling sand all over the yard. That's what he's been doing for the past couple of weeks. At this point, I'm curious to see what he's going to do when the sandbox is empty...I'm guessing I'll be making a trip to Home Depot for more...

I've been having an emotional day...an urge to cry for no real reason. I mean, I have plenty of reasons but none of them are overwhelming me today...maybe it's just a combination of all of it and when it's all added up, it's getting to me. Summer programming for Jakob, finding new ABA therapists, gotta get him in speech and music therapies, gotta get him a haircut, gotta start chelation, gotta get him back to the DAN doctor...gotta, gotta, gotta. Those are just decisions that need to be made and things that need to get done...it's just a matter of doing it. The other stuff I try not to think about too much...like the future.

Maybe what set me off was the short film I watched this morning. It was shown during Imus' show on MSNBC and it's all over the internet. It's one of those things that everyone I know sends me a link to...like the basketball player and the cover of "Time". It's a pretty powerful 13 minutes entitled "Autism Every Day". It features 4 moms talking about what it's like to have a child on the spectrum...and it focuses on the hard parts, the parts that most people don't understand about autism...the scary parts and the sad parts. A must see for everyone, really...if people want to understand. Nothing in it surprised or shocked me...since I live it every day...but it helped me realize even more how little people understand. Autism is my life...and it will be forever. Not a moment goes by in my day where my life isn't affected by autism. Now...I'm tough, I can handle autism...but sometimes I can't handle the fact that autism has control over my son. Yeah, I guess the video got to me and made me think a little bit more about it today than I usually do.

One of the moms in this short film said something to the effect of "all my son wants is to stay in his world and all I try to do is bring him into mine..." I know that feeling and the frustration, sadness and pain that comes along with it. I just wanna hug every autism mom I know...

As far as the future goes, I've pretty much decided that it will be Jakob and me forever. The likelihood of me even dating is slim. It would take a pretty amazing guy to live with me and take on the challenges that Jakob faces. And when the heck will I ever have time to search out that amazing guy...there just aren't many guys like that available. Oh well, everything happens for a reason, right? And it's really not something that I worry about...just something that enters my mind every once in awhile.

Jakob has been doing a little better since my April entry. The transition between Kenny's place and mine has continued to get easier for him. I will admit, it was pretty rough in the beginning. But I kept reminding myself that the whole situation would be hard for a typical kid, let alone a child with autism. The biggest challenge was his disagreeability (I think I just made up a new word). When he'd come back to my place, he was snippy with me. No matter what I asked him to do, I got attitude. He was pretty wound up too...seeking out stimming activities and refusing to transition away from them. It was hard...harder than it had been in the past. Every behavior he was displaying was something I'd seen before so I had to remind myself how I handled it then. Once I remembered, it became easier. Cycles. Everything in cycles. Everything.

Jakob's Journal

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