Wednesday, April 27, 2005

April 27th, 2005

It's a transition period. That's what I keep trying to remind myself. It will get better. It's just a matter of everyone getting used to a new schedule. That's all. A transition period...

My schedule has been altered slightly. Work has been busy, I'm getting a lot less sleep and I'm spending less time with Jakob. It is what it is and there's not a lot I can do about it. This is life.
Time management is my biggest issue and deciding how to spend my time is tough. What's more important...dusting Jakob's room and cleaning his sheets or reading a book with him? I'd prefer to read the book but I don't want him living in filth. I have to clean his room or his allergies act up and he has problems sleeping. I face a multitude of decisions like that one every day. It's all about "balance"...if one more person says that word to me...

One thing I'm trying really hard to accept is...I'm not "SuperMom" and no matter how hard I try, I never will be. If I keep trying to be "SuperMom", something's gonna give and it's not gonna be pretty. I read a saying somewhere..."Start where you are, use what you have, do the best you can, it will be enough"...or something close to that. I'm trying my best to live by that but it's hard. Before I was forced to "grow up", I had all the time and energy in the world to succeed in whatever I put my mind to. I guess now I'm attempting to succeed at too many things. (Is this making any sense to anyone besides me?)

Jakob has been having a rough couple of weeks. We have a good day or two and then it gets ugly. Twice in the past week his school has told us that they've had their hands full. He screams, cries, stomps his feet, throws stuff. We aren't sure why...wouldn't it be great if he could just tell us why he's so upset???? I'd like that a lot...

It's gotten to the point at home when he has these tantrums that I just leave him alone. I can see the confusion in his eyes...he gets so wound up that he doesn't even know what he wants. He wants me in the room, he wants me out of the room, he wants the tv on, the tv off, the door open, the door shut, lights on, lights off, he wants his sippy cup, he throws the sippy cup across the room. It's soooo frustrating for me, but I'm way more concerned about him. I want to make it better but nothing I seem to do, I just leave him alone to work it out on his own.
When I just leave him be, it's a nerve-racking time. The worry-wart inside of me can't help but think that something is physically wrong with him. He hasn't been eating very well and he's obviously having some digestive issues. I can't blame him for being cranky if he's feeling rotten. I think the weather has been a contributing factor as well...we haven't been able to go outside much...I know that it's making me nuts to stay inside.

There are so many different possibilties why he's been the way he's been. One strong possibility is a simple one...this is autism. This is just the way it's gonna be. This is the way he is...the good days are great, the bad days are a nightmare. And there is absolutely no way to know what tomorrow will bring. The "bad days" are just one of the many things that make autism such a sad condition. Jakob is obviously sad on those days and it makes me very sad to see him sad and even sadder that there's nothing I can do to make it better.

The poor kid got home from school today and was fussy. Then the injuries...he knocked himself in the eye with a door in the basement. He cried for a little bit...then came the lazy susan. He smashed his thumb in that and really cried. After the crying stopped, he whined for the next 45 minutes. I kept trying to get a good look at it. It's swollen but the injury looks to be closer to the nail. There's a small purple mark under the nail...but I don't think it's broken. After the 45 minutes of whining, he passed out while I was hugging him. I guarantee he'll sleep til about 1am...then he'll wanna party. I can look forward to that...

Basically, I'm gonna have to do something I don't ever like to do...ask for help. I need help. I haven't figured out what kind of help yet but I definitely need some kind of help. I'll have to figure out what I need help with first and I'm working on that...I have a few ideas but no clue where to go or who to ask. All I do know is once I have the plan, it's gonna be hard to actually go through with the asking part. It will be very uncomfortable for me...

Not all of this "transition period" has been awful. There have been some shining moments too. He's regularly doing "open and shut them" with me..claps and everything! It's the first time he's consistently mimicked anything like that. He's also been vocalizing a lot more. Both of these things are steps in the right direction towards speech. He's even learning more signs.

He's so ornery...I love that. I really don't have a problem with ornery. The way I see takes thought and creativity to be ornery. If he's trying to pull something over on me, he's thinkin'! He's trying to solve a problem...problem solving skills! One of the most important life skills...he's getting the hang of it! I look at it as a good thing...and it really makes me laugh. Laughter too is a good thing. I need the moments of laughter to outnumber the tears.

I'm looking for laughter and relaxation...and a little frickin' sunshine wouldn't hurt either!!!
I'm really looking forward to next Saturday's "Walk the Walk" at Devou Park to benefit Children's Hospital Division of Developmental Disabilities. Jakob and I will be there and I can't wait to talk to other families dealing with the same issues...we need each other. I feel so much better after an event like this...I almost feel "normal". Whatever "normal" is...according to a plaque hanging in my kitchen "Normal is just a setting on the washing machine"...


Thursday, April 21, 2005

April 21st, 2005

Busy, busy, busy. It sure seems like every week I write about how busy I am. My life is like an old Calgon commercial…I guess I keep fantasizing how one day I’ll sit down and write “what a lovely week…Jakob and I have been having great conversations about school and Kenny and I are leaving for Bora Bora tomorrow”…

The Play Date on Saturday went great. It was so nice to be around other families facing the same challenges. The next Jakob’s Play Date will be May 14.

Jakob has been doing pretty well. He was a bit of a booger there for a few days after Mom and Dad left. He started messing with stuff he’d been leaving alone like the fireplace. For some reason his patience level was a little low. He’d go from 0-10 in no time. Things that normally wouldn’t frustrate him were and he was pretty whiney. I’ve been told by more than one expert (parent or therapist) that usually a “difficult few days” lead to some serious “learning days”. That appears to be the case here. He’s starting to use a lot more signs and he’s doing well with following directions. I can see the wheels turning in his little head…he’s definitely up to something.

I laughed so hard I almost wet myself the other day. I’ve been trying to teach him that his sippy cup stays on the deck and doesn’t go up in the swing set. He loves to throw the sippy cup down the slides so trying to break that habit has been a little difficult. I can’t even count how many times I followed him through the yard to the ladder on the swing set, waited for him to get about half-way up, took the sippy cup away and put it back on the deck. He’d whine all the way down the slide and then sprint to the deck, grab the sippy cup and we’d start the whole process over again. Then one time, instead of just taking the sippy cup away, I gave him a ball to throw down the slide. He took that ball, walked 20 feet to the fence and threw the ball over the fence into the trees. Then, of course, he came back for the sippy cup. The look on his face…he is so ornery. It was one of those moments when I couldn’t help but laugh.

Everything with him is like that…a game. He one-ups me then I one-up him. It can go on forever. It’s so funny. I have to admit that I enjoy the process when I have the time to go through it. Jakob is just so smart. The ideas he comes up with and the ways he tries to manipulate me are hilarious. I gotta say…I’m impressed.

With all the beautiful weather we’ve been having, I’ve gotten way behind on the housework. All I want to do is play outside. With the rain, maybe I’ll get caught up. If I don’t…oh well, such is life.

I’ll probably get side-tracked from my dusting with the several books I’m reading. Autism stuff, apraxia stuff and a little on glyconutrients. It’s so tough because there is no research on anything so it’s hard to say what works and what doesn’t. I guess I just gotta trust my instincts…I will certainly write about it when I figure it out.

Jakob has quite the runny nose…allergies I think. He gets that honest…I’m a mess too. I need to stop to pick up some Puffs on the way home…


Tuesday, April 12, 2005

April 12th, 2005

For some reason, that I can’t pinpoint, I have this overwhelming urge to cry today. Nothing bad has happened and Jakob is doing fine. I’m not upset about anything in particular…maybe it’s just the rainy weather. Hopefully this feeling will just go away.

Maybe I’m just suffering from “Jakob withdrawl”. I was out of town for the weekend and didn’t get to spend any quality time with him. My parents were here too to baby sit and they left this morning. I didn’t get to see them much either. Kind of a bummer. It’s always so nice to have them in town. They ground me…and I need that every once in awhile. They help me remember who I am, if that makes sense.

It’s also great how much they help me. Just the little stuff helps so much…organizing stuff, fixing little things. And they always make me laugh. Mom and I had the best giggle last night with one of Jakob’s toys. It was this magnetic face that you put the eyes and nose on…kinda like a Mr. Potato Head. We were putting silly mouths on people and Mom did a face that was supposed to look like Dad. We were laughing so hard we were crying. It’s nice to laugh like that. I’m definitely at that point in my life where I really like having them around. You rarely hear an adult say that they’d love for their parents to move in with them…well, I’d love to have them move in with us.

Jakob would totally dig it too. He loves hanging out with Grandma and Grandpa. Grandma has a very calming way about her. He’s always snuggling with her and he loves her homemade cookies. Dad is 6’4 and Jakob loves it when Grandpa picks him up. Jakob and Dad had a ball together in the back yard on the trampoline and the swing set. It’s pretty amusing to see a 6’4, 62-year-old man jumping on a trampoline…I should’ve taken video.

It was funny last night when Jakob was playing with the DVD player and I told him to stop. He did it again and Kenny told him “no”. At that point, he went running to Grandma and gave her a big hug. He’s no dummy…he knows that with Grandma, he always gets his way. And I’m ok with that, that’s what grandparents are for.

I’m so proud of my Mom and Dad. They’re really taking Jakob’s autism in stride. They’re actively trying to learn as much about autism as they can so they can understand him better. They constantly try new things with him if what they’re already trying doesn’t work. They don’t fight him; they go with the flow. They’re awesome. Jakob reacts to them more than he does with anyone else. I love to just sit back and watch. Jakob and I are very lucky to have them. And Kenny’s lucky too…not only did he score me, he scored my parents. (I’m grinning and rolling my eyes as I write this.)

I have to say that the trampoline and the swing set extension were great ideas. Jakob loves our backyard and has really begun to interact with other kids when they come over. He’ll get in the tramp and laugh like crazy with the neighborhood kids where a couple of months ago he wouldn’t even look at them. Like the commercials say…”priceless”. The only drawback is that he never wants to come in the house. It’s a little bit of a challenge but I think I have it figured out. When he’s getting ready to go down the slide, I tell him “last time” and he grunts at me. Then I say it 12 more times and tell him that we can come back out later. Nine times out of ten, it works. For time #10, I just scoop him up, run in the house and open his sensory table. He recovers pretty quickly.

Kenny and I are looking into some summer speech programs. I hope we can get him in and that it helps. I think anything that’s structured will do him good. He’s using signs more regularly and I swear he so desperately wants to talk. I can see it in his eyes, he has so much to say. I can’t wait for the day that I can get in his sweet little head and find out what he’s thinking. I really believe that day will come. I pray it comes soon.

The longer we go without speech, the more terrified I get. Not long ago, I ran into a man (about 30) with autism. He was a sweet man but quiet. His eye contact was minimal and he didn’t say much. What little he did say he repeated over and over. He seemed timid, uneasy and almost frightened. I just wanted to give him a big hug but I knew that would be the last thing he would want me to do. More than anything, I think he just wanted me to go away and leave him alone. Standing about 5 feet away from him was his mother. I’d guess she was in her 50’s but looked far beyond her years. It was obvious she’s been taking care of him all his life. I walked away from that encounter and I was numb just thinking that might be Jakob and me 30 years from now.

Maybe it’s that encounter that makes me feel like crying today. I want so much more than that for my son. Scary thing is…we have no way of knowing what lies ahead. Jakob may be lucky to be as well-adjusted as 30-year-old Anthony. He may be a college grad. We’ll have to wait and see. For now, I’ll just make sure that I’m doing everything in my power to help Jakob be the best he can be. And whatever “the best” is, I’ll accept it and simply love him as much as I can.

I sure could use a tissue…


Tuesday, April 05, 2005

April 5th, 2005

I’m so relieved that the weather is getting better. I can’t believe how badly we were all suffering from cabin fever. All three of us have been a little crabby and defensive. The simple act of going outside has made us nicer. Jakob loves to go for a walk and play in the back yard. I can’t get him out of the trampoline and I just love all the giggling. He jumps, runs, tackles me and rolls around. It’s hard to believe that it was only a few weeks ago that he wouldn’t even stand up in the tramp. In some areas Jakob progresses quickly. In other areas, not so much.

Here’s the thing I want so desperately for people who know Jakob to understand…Jakob is FINE, he’s HAPPY, he’s HEALTHY and he’s an AMAZING LITTLE PERSON JUST THE WAY HE IS. Yes, he’s different in some ways but he’s more like the rest of us than most people realize. His differences aren’t so astronomical that they can’t be overcome with patience. Jakob learns differently than the rest of us. The thing to remember is that it may take a little longer, I may have to work a little harder, I may have to be a little more patient and creative and I have to laugh with him. If I remember all that, he’ll figure it out. It’s not so tough. In fact, it’s a lot of fun. There’s nothing better than seeing him try something new.

Things at home are tough. Kenny and I have differing opinions on how to teach Jakob. I’m sure that we’re no different than any other mom and dad when it comes to this. Discipline would fall in this category as well. I don’t really have the energy to fight about it even though I feel like I should. I’m gonna do what a lot of moms do…let him figure it out on his own. Hopefully, it won’t take long and he can see for himself all the amazing things that Jakob is capable of.

I’m just trying so hard to keep it all together. Between Jakob, Kenny, work, Miller, my friends, the house, the cat and all the day-to-day stuff, I’m really struggling right now. Just when I think I have it all under control, something stupid happens like me hitting the “off” button on my alarm instead of “snooze”. Stupid. Maybe that’s another one of those “signs”…it’s a sign that there’s no “snoozing”.