Tuesday, March 29, 2005

March 29th, 2005

I have so many options for what to write about today and I’m not sure what direction to go. My choices are…how Jakob learns, what I’ve done to the house, discipline issues and how I’m trying to solve them, our friends, why Kenny makes me crazy, why I’m crazy…and more! I swear I have enough material to write a book. I’m so in the mood to vent but I will refrain. Let’s write about Jakob…after all, he is my favorite subject.

It seems I learn something new and different about my son every day. And everything I learn about him I learn by observing. Since we don’t have any language yet, the only way to learn about him is to watch everything he does. While this process can be frustrating for some, I actually enjoy it. I love to figure out why he does the things that he does. For instance…why does he love to run from the living room to the fridge? Back and forth and back and forth, looking at the wall as he runs by it? After watching him, I figured out that he was looking at his shadow. He was racing it. Once I had that figured out, I knew how to join him in his game. Now we do “on your marks, get set, go!” Or we run one way and put a number on the fridge then do it again. If I sit and pay attention to him, I get a little more insight into his world. The more I learn about “his world”, the more I’m able to pull him into mine.

The simpler stuff like the shadow is easy. The things that aren’t so simple are exhausting (I still enjoy it but it makes me very tired). Right now, we’re dealing with a doozie that we’re having trouble resolving. For some reason, he doesn’t want Kenny and me in the same room together. The family room is the space where it’s the worst. If we’re both in there, he cries and tries to pull Kenny out of the room and into the kitchen. This will continue until Kenny leaves, I leave the premises or until Jakob has such a fit that he wears himself out and he falls asleep. It’s not fun. This behavior is pretty consistent with Kenny and me but he’ll also do it to other people…my mom, our friends. We’ve tried several different approaches; nothing has worked.

It would be helpful if we could figure out why he does it. I have a few ideas…maybe he’s so used to having only one of us home with him at a time that he doesn’t want to share our attention. Maybe the room is too loud with more than just one of us in there and he gets over-stimulated. Since he always wants me in the room, maybe he doesn’t want to share me. Or maybe…something has happened in that room when Kenny and I were in there together that upset him. I’m so afraid that’s it. I don’t know what the “event” could have been, but if I had to guess, Kenny and I had an argument. Jakob senses tension and he doesn’t like it. He acts out. I can’t blame him, I don’t like tension either.

We’ll just keep watching and trying…that’s all we can do.

Our home life is about to become more complicated. Poor Miller. He tore a ligament in his knee and is having surgery today. I pick him up tomorrow and he has to be confined for 6 weeks…yeah, right. That dog is under my feet every second of the day and if he can’t see me, he cries. How the heck am I gonna lock him up? Poor guy. He doesn’t understand why we’re confining him, he’s gonna think he’s being punished. He’ll need some extra attention. I guess I’ll be getting less sleep for the next 6 weeks.


Thursday, March 24, 2005

March 24th, 2005

I woke up late this morning…I hate it when that happens. I never quite seem to pull it all together on days that I wake up late. No good coffee either, that doesn’t help.
I have to say that I’m surprised that I only got one e-mail on last week’s entry that urged me to seek counseling. I thought for sure someone would show up here with a straight jacket. It’s good to know that maybe I’m not that crazy after all.

My Mom left yesterday…sad day. I love having Mom around. The woman has a way about her, she calms me. She’s so relaxed, she never gets too wound up about anything. It’s a nice change since I’m usually surrounded by a lot of people that get wound up about everything.
What she did to help me is amazing. She cleaned and organized all my closets…not an easy job. She organized all my clothes drawers, re-arranged furniture, put up my spring décor and so much more. And of course, she took care of Jakob. Jakob loves his Grandma…they play and snuggle. I saw him do things for Grandma that he won’t do for me. He just sat on the couch next to her and cuddled with her for an hour!! I can’t get him to do that but Grandma sure can. It was great. I need her to move in…

I went to the wine tasting event for Children’s Hospital Friday night and it was wonderful. I so love being in a room full of people who understand what my life is like. It’s just so much easier to talk to strangers in the same situation than it is to try to explain it to people I know. I look forward to another social event for “special parents”.

Jakob has a pretty good cold. His nose is a mess and he’s coughing like crazy. Luckily he hasn’t been too cranky…yet. (I’m knocking on wood.) I think we may have gone overboard on the new trampoline the other day. It was too cold out but I didn’t have the heart to make him go inside. He only started liking the trampoline a week and a half ago…now I can’t get him off of it! He jumps, he crashes, he lies on his tummy, he bounces on his knees and his bottom. He’s even jumping with other kids! He giggles when they jump and do flips. It’s awesome.

The addition to the swing set is a hit too. I really believe all this “physical therapy” stuff is gonna help him, I think it already has. I can just see that he’s becoming more aware of his body and what it can do. It’s a great thing to see. I’ve also noticed so much more vocalizing. He’s chattering non-stop and I’m hearing so many new sounds. The sign language is coming fast too. It’s one quick-moving party at my house right now! I hope I can keep up.

I’ve made so many decisions about what to do to our house to make it more “Jakob-friendly”. I think my shopping is almost done (I hope). The next big decision will be what to do, if anything, over the summer when school is out. I have everything set up at home to do “home schooling” but I don’t know if that will be enough. I’m gonna look into some camps and other programs and I might get him into additional therapy. So much to think about and look into…I’m not quite sure where to start! I’m just thrilled that the weather is getting to the point where we can go outside more. He loves to be out running around. I very much so look forward to moving his sensory table outside…he likes to dump the rice and oatmeal on the floor. It was making Kenny crazy so I put an inflatable pool under it but it’s only catching so much of it. I know we have to have mice that are loving us right now…(don’t tell Kenny, he hates rodents).

Overall, I feel pretty good this week. Having a couple days off work sure helped. I think I’m almost caught up on everything at home…now I just have to catch up on everything else I have going on in my life…if that’s even possible. This week, I choose to believe that it is. (Next week I’m gonna choose vodka).


Tuesday, March 15, 2005

March 15th, 2005

A little bit of a rough night last night. I have some sinus thing going on and couldn’t sleep. Jakob woke up at 3:00 crying. Still not sure why, I think he was upset that one of his socks had fallen off. He was pretty wound but ended up falling back asleep after a little cuddling and a Baby Einstein video. Sometimes I wonder what we’d do without the videos. He doesn’t watch near as many as he used to and I know they’re not the best thing for him but sometimes, they’re our only hope. Everything in moderation, I guess.

We had our first play date at ABC on Saturday. I really think it was a huge success. I sure know Jakob had a blast. He was all over the place…climbing up the slide, going up the rockwall and even jumping on the trampoline! It was very exciting! All the kids did great, I didn’t see one meltdown and they had no problems taking turns. It was just so nice to see the kids just being kids…it wasn’t structured therapy, it was just playing with whatever they wanted to play with. I loved it. I can’t wait to do it again.

I got to talk to a lot of parents at the play date, there are so many of us in the same boat. I was extremely impressed with the level of passion all the parents had for helping their child. They were just like me…whatever it takes to make it better. It was so nice to be surrounded by people who understood exactly what my life is like. I don’t think you can fully understand unless you live it. People can sympathize but not empathize. There was a whole lotta empathizing going on in that room. Like I said, I loved it and can’t wait to do it again.

The one thing I learned talking to all the moms is that inevitably I will have to fight for my son. Most of the parents who have been dealing with this longer than me have had to fight somebody…a teacher, the school, therapists, doctors. I’ve been really lucky so far that I haven’t had to fight anybody but the insurance company (and I’m letting Kenny handle that). After Saturday though, I know my day will come. I’m not looking forward to that, I hate confrontation. And I suck at it. I’m a wimp, I back down easy. But who knows, if I’m fighting for Jakob, I may just turn into a raging nightmare. Kinda like the woman with super-human strength that lifts a car off of somebody…yeah, that’ll be me. We’ll have to wait and see, but I’m starting to mentally prepare myself.

While I’m mentally preparing for a fight, I’m going through the worst of my phases. (My whole life is a cycle of phases that just keep repeating themselves…most of the time in a specific order. Last phase was exhaustion and depression.) I’ve moved into my “I’m insecure and I desperately need lots of validation” phase. This is a very annoying phase. I’m making everyone around me nuts. I don’t blame anyone if they don’t really want to be around me right now. I question everything I do and second-guess every decision I’ve made. I way over-think all the decisions I’m currently making and I swear, I’m bouncing off the walls. I cannot sit still. I have to go, go, go or else I go nuts. I have to feel like I’m doing everything humanly possible to make Jakob’s life easier and if I’m not doing everything then I’m not doing enough. Now if I could just quietly go through this phase, it wouldn’t be so bad. Problem is, the validation thing. I need to hear over and over again what a great job I’m doing. I need to hear it from EVERYBODY. It’s ridiculous. If I don’t hear it, the cycle continues…my brain tells me “if no one’s telling me that I’m doing great, then I must not be doing enough so I need to do better. I need to do more…what can I do? How do I accomplish that? When am I gonna have time? I’ll figure it out cuz I have to cuz I’m not doing enough. If I was doing enough, I’d be getting more praise”. Scary, huh? Welcome to my reality…I think too much.

Taking into consideration that I think too much…this phase always has me questioning whether or not I’m crazy. And if I am…will medication alone help or do I need big-time therapy? And if I need therapy…how will I pay for it? All my money is going to Jakob, I’m not gonna cut back on stuff for him so I can pay to go “talk to someone”. Once I get this far, I decide that I’m not crazy. I’m just tired.

Unfortunately, this phase affects the people closest to me. I constantly go fishing for praise and voicing all my insecurities. I can tell I’m making everybody nuts. I’m sorry, I don’t mean to. This phase will end soon…I promise.

One thing that has to get done is a schedule. I need help scheduling. I’m gonna have to get a “schedule book” and write everything down. My whole life, I have fought having a schedule. Ask Jeff, he’s been telling me for years to “make a list” and “write it down”. I don’t like schedules. I have always felt that people who live by a schedule are wound too tight, too serious. Too much structure would make me feel “trapped”. I always wanted to “be free” and “go with the flow”…”take things in stride”. I have always lived like that. I can’t anymore. I’m too overwhelmed with information and places to go and questions to ask, things to do, errands to run, books and articles to read, people to call, e-mails to answer…. Party’s over. I have to write things down.

I feel like a pre-schooler who overnight skipped K-12 and undergrad work and went straight to getting my doctorate. That’s what this feels like. Another Mom put it well when she said to me “Baptism by Fire”. We have all these wonderful people working with our kids who know what they’re doing. They’ve spent years in school learning about our kids’ issues. Thank God we have these people…but when can they move into our house?? We parents spend more time with our kids than all their teachers, therapists and doctors combined yet we know the least about what to do to help them. That’s a rotten helpless feeling. Knowledge is power…I’m working on that.
On a much lighter note…the basement is coming along, my Mom gets here Thursday. Kenny will be leaving for New York Thursday afternoon and I have a fabulous event for Cincinnati Children’s Hospital Dept. of Developmental Disabilities on Friday night.

Jakob is really doing great. I try very hard to not let my “phases” affect how I am with him. I think I do a pretty good job of that. When he and I are together, I really feel like everything is gonna be ok. His smile fixes everything. I look at him and I feel it in my gut…he has so much potential, I just gotta figure out how to reach him. It’ll happen, I just know it.


Wednesday, March 09, 2005

March 9th, 2005

I knew this would happen. I feel much better today. I think my funks happen when I’ve gone a couple of days without one-on-one quality time with Jakob. I desperately need that quality time. He keeps everything in perspective for me.

All it took last night was 10 minutes with a book called “Are You Ticklish?” It’s this sweet little touchy-feely open the flap book. It has pictures of animals with the question above them…”Are lions ticklish?”, then you open the flap and there’s the touch-feely part with the answer…”Yes! Lions are ticklish!” Jakob turns the pages, opens the flaps, touches the feely part then waits for me to tickle him. He laughs hysterically the entire time. I even sat across the room from him and he would go through all the motions then run over to me to be tickled. We had a ball and now I feel much better.

I think the other thing that was bothering me was his progress report from school. Even though he’s doing better, I had hoped for more. We’re getting there though and I have to remember how far he’s come. Sometimes that gets hard to do.

I’m getting so close to having the house set up for him just the way I want it. I’m so anxious for all the planning, shopping and working on it to be over. I want to be able to just relax and use all the stuff to help him. Once that basement is finished, I just know it will be huge for him. I’m getting impatient. I may have to take a couple of personal days to get it finished. My mom is coming next week and she’ll be a big help. I’m looking forward to hanging out with her.

I understand and accept that those “down” days are gonna happen. I just have to know how to pull up out of them. If I can also figure out how to have fewer of them, that would be helpful too. I’ll work on that.


Tuesday, March 08, 2005

March 8th, 2005

Weird week. A bit of a blur, to be honest. A lot of drama. When Jakob’s good, he’s great. When he’s bad, he’s awful. I’ve been floating somewhere in between.

My biggest challenge right now is the whole discipline thing. When it’s just Jakob and me, he’s really well-behaved. We don’t fight about the tv or fireplace, he’s in a great mood, we really “connect” and I can get him to do pretty much anything I want him to do. That’s not the case if anyone else is around. He turns into a little nightmare…trying to push people out of the room, turning off the tv, having fits. He’s a totally different child and I have no clue what to do. It’s so frustrating, especially since I know he has it in him to be soooo good. I’ll continue to take it one day at a time and do a lot of observing. Gotta watch him every minute in order to understand why he does what he does. I gotta say though, once I figure out “why”, life becomes a lot easier.

The basement is coming along. I really only have time to work down there on the weekends. I’m still hoping to have it done in the next 2 weeks. I’m anxious to start using the “exercise” room and the “classroom”. The toughest part of doing a big project like this is the anxiety over whether or not he’ll like it. So much work and thought goes into it and it still ends up being a crap shoot. I feel like my odds are pretty good on this one, I have a wonderful consultant (Jakob’s OT).

I’m having a moment…one of those moments when I feel helpless. I think about my son and how far we have to go. He’s come a long way but he’s still so far behind. It becomes more obvious every day. He had a haircut and the lady cut it too short…the curls are gone. It makes him look like a big boy, not my baby anymore. I don’t like it. And he’s getting so tall. It freaks me out. I get terrified for the future…too many unknowns. I hate it. How much potential does my son have? What’s our best case scenario??? No one can answer that for me. Everyone I ask says the same thing…”I wish I had a crystal ball…” Would someone please find me a crystal ball already??

Kenny and I are having a rough time too which doesn’t help. We’re just not getting along, tough time communicating. When so much of our free time is spent on trying to help Jakob, there’s not much time for us. It’s really rough right now but I’m trying to make it better. Always trying to make everything better and easier but just because I try doesn’t mean I’m successful. In fact, a lot of times I’m unsuccessful. Frustrating.

One thing I’m really looking forward to is Jakob’s Playgroup this Saturday. We’re doing it at ABC Pediatrics in Westchester and it’s open to kids with ASD and their parents. I’m hoping for a really good turn-out. It’s free but I do need parents to register on-line. The registration is under “Events and Appearances” on Jakob’s Journal home page. Please come…we’re gonna play and chat and bond. It will be lovely.

I’m going to take a few moments to “breathe”…I’ll post another entry later in the week, when I’m feeling a little more positive. The life I now live is such a rollercoaster and it’s minute-to-minute. It would be less exhausting if the ups and downs lasted longer…up for a day, down for a day. I so crave some sort of consistency and today I just feel like consistency will never happen. Funny thing is…probably sometime in the next hour I’ll be feeling great.


Tuesday, March 01, 2005

March 1st, 2005

It has been such a fun week. Jakob is doing really great! He’s been using sign language which is something we’ve been working on for a long time. He’s using the sign for “more” unprompted…it’s been awesome! He’s also signing for “drink”, “eat”, and “open”. I’m thrilled to know that he’s understanding what these words mean. I’ve worried for so long that he just didn’t know what we were talking about and now I know that he does. What a relief…a step in the right direction. He’s also been interacting with us so well…it’s pretty constant. Lots of peek-a-boo, blowing kisses and taking turns. We take turns playing bongos. He’s so good at it! He’s also quite skilled with cymbals and the xylophone. We have quite the concert every night. The best is when he decides to play the cymbals at 7am on the weekends when Kenny’s still sleeping. What am I supposed to do??? Say “no” to a child who’s expressing himself through music?? I don’t think so!! Play those cymbals and play them loud!!!!

For some reason, picking on Daddy has been the theme the past few days. On Sunday, it was the cymbals at 7am and by 9am Jakob was stealing Daddy’s money. Jakob has one of those big crayola crayon banks and he loves to put change in it. Well, he found Kenny’s stash of quarters and dimes that’s hidden in our dining room. I saw Jakob tearing out of the dining room and heading for the kitchen where his bank is. I couldn’t figure out what he was doing so I watched him put a quarter in the bank and head back to the dining room. For a good five minutes, I watched him running back and forth stealing one coin at a time. It was hilarious. I kept saying, really loudly so Kenny could hear, “Are you stealing Daddy’s money? You take that money, buddy! Take Daddy’s money!! Take it all, you can have it. Goodness knows Daddy won’t let Mommy have any of it!” Needless to say it wasn’t long before Kenny came downstairs in his underwear to see what was going on. Of course he wasn’t mad…but he did hide the change in a spot where Jakob couldn’t reach it as easily.

I’ve started quite a project. I’ve decided to finish off an area in our basement without putting up walls, a ceiling or carpet. I figured I could accomplish what I needed to accomplish without spending a fortune…we’ll see about that. I’m doing my best. I desperately need an area to use as a classroom for Jakob, especially with summer coming up. Pretty much all therapists and doctors agree that children with autism need around 40 hours of work per week. They can get him to sit in a chair at school and at therapy but I can’t get it done at home so I’m making the room a classroom. His classroom will be the place we go to “work”…coloring, cutting and all that fun stuff. I sure hope it works…I really think it will. My “design team” (Jakob’s therapists) have been helping figure out what to put in the room and his OT (who I LOVE) is even getting her hands dirty. She’s right there with me…shopping for the stuff and helping me put it up. Did I mention I LOVE HER??? She’s been an amazing help to us, we’ve been very lucky to find her.

Finding people who “understand” is a tough thing to do. The response that I get to this journal has been overwhelming…everyone I hear from either understands or is trying really hard to understand. It’s very refreshing. It’s amazing therapy for me. It seems I spend most of my time around people who just don’t “get it”. It’s no fault of their own…what they see on tv about autism can be misleading and frightening. What I’m learning is that the public perception of this disorder is “off”. If I didn’t have a child with autism, I’d be right there with them…in fact, 2 years ago I was right there with them.

I have this unbelievable drive to educate people about autism. Unfortunately, I don’t know enough about it yet to do it justice…but I’m working on it. I’ll know when I’m ready, I think I’m getting close. I know this “drive” is fueled by my wanting everyone to see what a beautiful child Jakob is. I want people to get to know him and understand him. I want him to be accepted. The “acceptance” thing is going to be my biggest struggle and I’m not sure where to start. But I’m working on it. (I feel like I’m working on a lot of things…it’s a good thing I can multi-task). With the support staff that we’ve been so lucky to find, I know in my heart we’re gonna figure it out. Hopefully soon.