Thursday, May 26, 2005

May 26, 2005

Jakob had his last day of pre-school for the year...I wonder how long it will take before he hands us his backpack and drags us to the front door. I think he likes school, he's always excited to go. I know he loves circle time when they sing. I swear he's trying to sing Bingo, he does the clapping and everything!

Jakob has been in a pretty good mood the past few days. I haven't had too tough of a time getting him to do what I want. He's been snuggly, sweet and laughing a lot...just the way I enjoy him most. He's been using a lot of sign language. I need to learn more signs so I can teach him. There's always so much to learn...

Jakob is just so darn smart. He loves those Ritz Carackers sandwich crackers that have peanut butter, cheese or american and mozarella in the middle. We try to give him the peanut butter ones the most since we figure those are probably the healthiest. Well, for the past few days, whenever we take out the box of the peanut butter ones, he grabs the box and pulls us over to the pantry. He tries to reach the shelf where all the crackers are so we pick him up. Then, the little booger puts the box of peanut butter crackers back and looks at all the boxes until he finds the american cheese and mozarella ones. He hands us that box and uses the sign for "open". Every time he does this, I just crack up (and of course give him what he wants). I can't help but wonder if he knows the difference between the pictures or if he can read. The more I watch him with anything with letters and words, I think he's reading.

I'm so glad we've done so much with our back yard...the fence, deck, swingset, trampoline. It's just so nice to hang out back there. Jakob loves to be outside. He runs around, plays with bubbles, jumps on the tramp and shows everybody where he wants them to sit. I just added some windchimes so we'll see how long it takes for him to notice. He loves music so much that I figure he'll really get a kick out of them. I went to this place in Westchester called "The Bird Garden", that's where I got the windchimes and I also bought a bird feeder. I want to attract cardinals so they told me what kind of food to get...bright red birds flying around will hopefully grab Jakob's attention too.

I'm really trying to's not easy but I'm trying. I'm really looking forward to the weekend, I have all 3 days off. I can't wait to just do "whatever". My goal is to hang with Jakob as much as he'll let me and make him giggle as much as possible.


Monday, May 16, 2005

May 16, 2005

In honor of Star Wars....welcome to the dark side. What I am about to write is going to be difficult for me to share. But I feel that I am not doing Jakob or myself any justice by not revealing the truth.

The reason I'm choosing to put this down on paper is I have this overwhelming desire to be completely honest about how I feel. That's not always easy. So much of it has to do with growing up in the midwest. We do things differently here than it's done New York or Florida. I was born and raised in a small town in Illinois. Everyone was taught to "behave properly" and that can get complicated. Behave properly means more than a couple things. It means "always consider what the neighbors might think" and "what will my friends say?" and "don't offend anyone"..."be careful not to hurt anyone's feelings"..."choose your words carefully"..."say what you mean and mean what you say"..."don't say anything you don't want repeated" get the idea.

What I'm trying to have the courage to write goes against every lesson I've ever learned. It might make people who read it uncomfortable. Some of it, I've never said out loud to anyone. Some of it may sound irrational or overly dramatic. It will probably make people who know me well worry. Please don't, I'm fine. I'm just being honest. Please don't feel sorry for me either; that is the last thing I want. Most of all, don't feel sorry for Jakob...he couldn't be more loved.

All that being said...

I'm sitting at the dining room table. Kenny's on the couch and Jakob's on the floor. Jakob didn't go to school today or yesterday; he has strep throat. The poor little guy is so miserable. Fevers of almost 104 for the last 2 days. He keeps sticking his fingers in his mouth and crying. I can't tell if he's cutting a tooth, has a sore in his mouth, something stuck in his throat or simply a sore throat. He's also doing a lot of moaning and groaning... I don't know why. Stomach cramps? Gas? Nausea? Or appendicitis??? I wanna wipe his crusty nose but I don't dare try right now...timing is off. I have to wait a couple more minutes to make sure he has the best possible disposition. I think he's wearing the same diaper he's had on all day...too traumatic to try to change it. This is one of those nights where I feel my shoulders and head just spirit becomes weak...I'm exhausted. I have such a difficult time coping when he's sick...I feel so helpless..all I wanna do is have him tell me what hurts so I can fix it. It's unbearable to see him this way and not be able to help.

As I sit here thinking about all the fun that lies ahead for us this evening, I look out our 2-story windows and I see the neighbors' kids playing. There are several out there, all right around Jakob's age. One is throwing a's hitting it. One waves at me, another shouts "Hi Jenn". They're laughing and playing together and enjoying a sunny afternoon. This is when that overwhelming feeling of loss comes over me...I'm reminded that Jakob can't do any of those things. There's a pretty good chance he never will.

Right now, Jakob is sitting on the floor making "cooing" noises and clearing his throat. Those noises are background in our house. He makes those noises all the time. I'm starting to get strange looks at the grocery store when I have him in the cart and he starts to "talk". I make all the noises right back at him. To us, this is normal other shoppers, completely foreign. Strangers are now able to see what we've known for awhile...Jakob is different.
Kenny and I had the same dreams for Jakob as most parents have for their kids. For us, the road to those dreams took a sharp left. A new dream for him now exists.

Breathe, breathe, breathe...

So when I sit here and watch the other children, I ache for Jakob. I want him to experience the same joys that they do. I want him to live a "normal, happy life".

I worry he'll be the kid they make fun of, tease or beat up.

I'm afraid that he'll be 15 and still in diapers.

I'm fearful that he won't have any friends and that other kids won't accept him.

I picture him still eating macaroni and cheese with his fingers at 12...or 35.

I'm terrified that I'll never hear him say "I love you, Mommy"...

I've said before that I feel like I'm on a rollercoaster. Well, this is what the dips feel like.

Fears are a horrible thing to voice, a difficult admission. Voicing fears shows vulnerability. I can't afford to be vulnerable...I really don't have the time or energy for it. The truth is my life isn't about me anymore. It's about a little guy who needs so much help. A little guy that I love more than anything.

Most of the time, I can take my fears and use them as motivation. But I'd be lying if I said I didn't experience fear. I experience a lot of it. I can be having a great day and get a total slap in the face with reality. Even though I feel like I've accepted Jakob's autism, I don't think I've come to grips with what it all means. My biggest fear is that I never will come to grips with it and these dips in the rollercoaster ride will never go away.

I've met so many other Moms who have "special" kids. I always want to just give them a hug and tell them how awesome I think they are.

I wanna thank every therapist and doctor who has committed his or her life to helping our children.

I wanna tell every parent with "typical" children to appreciate what they have, spend time with their kids, love them and laugh with them. Teach them songs, read books to them, build blocks, get dirty, get a puppy. Most of all, teach them compassion. Compassion leads to understanding and that's what my Jakob needs more than anything.