Friday, February 25, 2005

February 22nd, 2005

I have to admit…it has been a great week. Jakob is making so many improvements and he’s trying so many new things. Stuff he’s never done before…playing peek-a-boo, blowing kisses, using the sign for “more”, trying to put his socks on, pointing, mimicking. It’s been awesome! It’s been one of those weeks where I feel that all we’ve been doing to try to help him is working. I really love weeks like this. Weeks like this inspire me to keep on keepin’ on.

We have been so lucky. I love the people that work with Jakob. Last night his OT, PT and Speech therapist all came over to the house. They gave us so many things to try with him and showed us exactly how to do it. I can’t wait to pick him up from school today and start trying some of their suggestions. They’re all so much fun and it’s obvious how passionate they are about what they do. They really care and they want to help us. The support we’re getting from them is incredible. I don’t know where we’d be without their help.

Of course, they got on my case a little bit about the whole discipline thing. Ok, I admit, I suck at it. I let him get away with so much…turning off the tv, flipping lights on and off and eating cheese. He’s just so good most of the time and I really do hate telling him “no”. And, I’ll also admit, he totally knows how to manipulate me…a kiss and a little clapping and he can have anything he wants. I can’t help it…he’s too darn cute. And he’s funny. It’s hard to punish a child when I’m laughing hysterically. I am going to make an effort to get better…I have to. It’s what’s best for Jakob. So…there’s a “naughty chair” by the tv and I’m preparing to “count to 5”. I’m not looking forward to it…it ain’t gonna be fun.

Kenny’s doing great…he’s much better at the discipline thing than me. I’ve learned a few tricks from him. I hope I can “be strong” when Jakob throws a fit because I won’t let him have any more cheese. If Kenny’s home, I’ll let him handle it. I’ll do bath time, that’s what I’m better at. Plus if I take the backseat when it comes to the disciplining, Jakob will like me better…(just kidding, sorta).

I’m tired. I have weeks when I feel pretty good. This week I’m tired. It’s funny, everyone tells me to “put myself on the list”. Ok…I have a pretty long list. There’s really no time for myself…unless I spend less time with Jakob, quit my job or get less sleep (I now get about 5 hours per night). I’d love for a time management expert to take a look at my list and tell me how to pull off more time for myself. I’m serious. Know anybody?? I’ve gotta figure it out…my blood pressure is through the roof, so is my cholesterol and I suffer from anxiety. I’m overweight and out of shape, I don’t eat right, no exercise. When you start listing off all my ailments, I sound like a total mess! Even I get overwhelmed by what a disaster I am. It’s so overwhelming that I don’t know where to start. So I just don’t do anything…it’s not good.

My health isn’t the only thing that overwhelms me…take a good look at my house. Dust, clutter, crap everywhere. I’ve pretty much given up on it. It’s one of those things that I’m just trying to accept…I’m never gonna have a clean house…I’m never gonna have a clean house (if I keep saying it, maybe I’ll start to believe it). I’d love to get a maid service. I had a company come right before Thanksgiving, in hopes that Kenny would love it. Didn’t work. They charged way too much and did a rotten job. Kenny actually called them and made them come back and do it over. That whole experience soured him on cleaning services. Maybe I can try again in a few months.

I figure that my house being clean and me getting in shape can wait. It’s go-time with Jakob. The more we do with him now, the better his chances are later. For now, I’ll try to control the clutter and stay away from the fast food (I’m gonna miss that quarter-pounder with cheese).
I just have to say that I love being Jakob’s mom. It’s been two weeks since we got his diagnosis and Kenny and I are doing great. We adore that little guy and we enjoy every minute with him. We have our tough times and it ain’t always easy but having Jakob is the most amazing thing we’ve ever experienced. He’s 3- 1/2 and he’s just now started to clap his hands and play peek-a-boo. That’s a big deal. And every time he does it, we go crazy…clapping and cheering. Then he claps more and laughs and runs to hug us. It feels like we’re witnessing a miracle when he does something like that. It’s awesome.


Tuesday, February 15, 2005

February 15th, 2005

It has been a really rough week. Jakob has not been himself. We’ve seen some behaviors that we haven’t seen in months and it has been scary. Temper tantrums that lasted for what seemed like hours. Temper tantrums that came out of nowhere for no apparent reason. Screaming, hitting, kicking and more screaming. There were several times when I thought I was gonna lose it. No matter what I did, I couldn’t pull him out of it. Nothing worked…I couldn’t distract him, favorite toys and foods didn’t help, even his blankie was a no-go. It was the most helpless feeling…I did a lot of breathing.

Ya know you’ve got trouble when you’re waiting in line to pick up your child from school and his teacher is making a b-line for your car…not a good feeling.

Luckily, he’s coming out of it. The past couple of days he’s been back to himself. He’s happy and calm again. He’s interacting really well and his eye contact is great. Thank God. I don’t think I could’ve taken much more of the “obstinate” Jakob. I’ve been trying to figure out what might have caused the setback. His routine was messed up for a while…houseguests, he was sick, missed some school. That could have done it. Temporary regression is normal with the Sensory Learning Program. That could have been part of it. Or maybe, this is just what is going to happen every once in a while…Jakob has autism.

Kenny has really been great. He’s been unbelievable with Jakob…he’s even been the more patient and calm one a couple of times. He and I are really beginning to work together as a team. It’s so nice…for us and for Jakob. Jakob sure does love his Daddy. I have to give Kenny a lot of credit. A lot of fathers would’ve reacted differently to their son’s diagnosis. Kenny’s right there with me…whatever we have to do to help Jakob. He’s our little guy and we love him more than anything.

Since we got the diagnosis, I think some of our friends are distancing themselves from us. I don’t think they know what to say. I can tell they’re uncomfortable. I hope this is just a phase and they’ll come back around. They need to know that we’re ok. We really are. This is hard but we’re handling it. I guess when you have kids and they’re “normal”, trying to imagine having a child that’s “different” is overwhelming.

I’ve come to the decision that this is my destiny. I was destined to be a mother of a special needs child. I’ve been groomed for it my whole life.

Nothing bad has ever happened to me. Aside from the standard loss of my grandparents and a few pets, there has been no tragedy in my life. My childhood was wonderful and happy. I had an easy time in school. I’ve never really had to struggle with anything. I’ve been so very lucky. I used to wonder “when is something bad going to happen to me and when is it going to happen?”
I think this is it. But Jakob and his diagnosis isn’t something “bad”, it’s a challenge. Big difference between bad and challenge. And it’s this “challenge” that I’ve been groomed for.
My parents are amazing. I’ve never seen them rattled. Nothing upsets them or makes them mad. They’re steady, unshakable. Whenever faced with a challenge, they immediately would look for a solution. They never wallowed in it…they just tried to figure out a way to make it better. And I don’t think they ever failed. They also have this unbelievable ability to laugh. Laughter will help us through this. I need to make sure I tell them how awesome I think they are and thank them for all they’ve taught me along the way. All their lessons about life are already coming in handy.

I’m trying so hard to keep my chin up. I will say it again…I believe everything happens for a reason. This past week, my patience and strength have certainly been tested. I’ve done a lot of thinking…a lot of soul searching. I’ve almost cried on several occasions (I’ve never been much of a crier). I’ve had moments when I’ve felt so very lost. Throughout all the mood swings and the fear, one thing has remained constant…I have never loved anything like I love my Jakob. And it’s his smile and his laughter that will get all of us through this…together, as a family.


Tuesday, February 08, 2005

February 8th, 2005

I’m starting to come out of the fog I’ve been in for the past 24 hours. We got the results yesterday of Jakob’s ADOS and they weren’t what I was expecting. I really believed he would test on the autism spectrum but he didn’t. It was autism. The label is autism. To put it in perspective, his score could’ve been 0-22 with 0 being no autistic characteristics. A score of 7-12 would have been autism spectrum disorder. Jakob scored a 16. Autism. I have to admit I was shocked. So was Kenny. We really didn’t think it was full-blown autism. We were so sure that it wasn’t gonna turn out like this. But it did. Autism.

I was shocked that I was so shocked. I always said that it’s just a label and labels are more for other people than they are for me. I still believe that. But it bothers me. I haven’t put my finger on why it bothers me…but I’m working on figuring that out. It may be that it all just seems so much more real to me now. There’s a label on it…no more guessing what it might be. We know what it is…autism.

For the first few hours after we heard that word, I felt like I was having an out-of-body experience. Thoughts were racing through my head at 100 miles per hour…What do I do next? What happens when we get old? What happens to Jakob when we die? Will he ever talk? Should I have another baby so he won’t be alone? What if we have another baby and he/she is autistic too? Or has something else wrong? How do we afford more therapy? What haven’t we tried to do to help him? What does he understand…does he know how much we love him? This must be my fault…what did I do to cause this? What did Kenny do? Was it his vaccinations? How do I tell my family? Will they understand…will Jakob ever understand??? How will other kids treat him? HOW DO I FIX THIS???

At the end of the day, after talking to a couple people who always say the right thing, I came to a conclusion that I already knew in my heart. Jakob is the same sweet, loving, adorable, funny little guy that he was before we got the label. He hasn’t changed a bit. He’s my precious little man that I wouldn’t trade for the world. I love him just the way he is. And I always will. So will his Daddy.

He’s made so much progress in the past 10 months…there’s no reason to believe that he won’t continue to progress. I’m certainly not gonna stop doing everything in my power to make sure he’s getting all the help he needs. And I’m sure gonna keep on loving on him as much as I can. That’s all I can do.

For right now, this is all I have the energy to write. I wish I could type as fast as I think. This journal would be 10 times the length if I could.

I’m heading home for a quick nap so I have as much energy as possible to love on him when I pick him up from school. I can’t wait to see him. I’ve really missed him today.


Friday, February 04, 2005

February 4th, 2005

Ok, I feel like I can breathe…I’m starting to catch up. I hate that feeling of looking around and seeing so much that needs to get done and not knowing where to start. I still see a lot that needs done but it’s almost the weekend. No work. Plenty of time to organize. Right.

With Jakob it’s all about organization and variety. I swear I bring more stuff in to that house…toys, educational stuff, developmental stuff, arts and crafts, books, therapy equipment…the list goes on. I’ve thought that maybe I was over-stimulating him with too much clutter but I’ve tested that theory. He gets bored easily! I have to have a lot of things for him to choose from. The trick is to have it all categorized and grouped together and put away. That way I can pull out different stuff all the time. It’s funny. Organization is not a quality I possess. I suck at it. I thrive in chaos. Always have, just ask my mom. I think I might be getting a handle on this though thanks to help from his therapist and teacher. It just takes a lot of time and thought. Time and the ability to concentrate?? Right. (I’m laughing at myself pretty hard right now.)

Poor Jakob. He’s been sick all week. Fever, cough, no appetite, runny nose and cranky. He has no interest in doing anything other than watch Sesame Street. I’ve been cool with that. When I’m sick, all I wanna do is lay on the couch and watch tv so I let him do the same. I feel so bad for him when he gets this way…I also feel so helpless. If only he could talk and tell me what was wrong and what he wanted. Plus he doesn’t want to play with me. He has so many cool things and I want to play. I gave him a new little ball yesterday with a frog inside it and he threw it into a plant. That wasn’t fun. He also ignored his new remote control car. I swear I’m living a second childhood…sometimes I think these toys are more for me than they are for him.

Monday we go to Children’s to go over the results of the ADOS. I’m not expecting to learn anything new. They’ll probably tell us that if it’s autism, it’s not low functioning since he tests close to his age category in some areas. Good news but nothing we didn’t already know.

I could really use some bonding time with my little boy. Between having houseguests and him not feeling well, we really haven’t had a chance to “connect”. I hope he feels better this weekend so we can do some of that. And hopefully he’ll play with me…I really dig that remote control car.


Wednesday, February 02, 2005

February 2nd, 2005

I have absolutely no idea where to begin. I am completely overwhelmed right now. I’m going in 10 different directions and I feel like I’m getting nothing accomplished. I hate weeks like this cuz I feel like I’m not giving Jakob the attention he so desperately deserves. Throw into the mix that he’s sick…again, so my guilt level is at an all-time high. I just try to get as much done as I can and prioritize. The whole “finding balance” thing is such a challenge.

Jakob has had a very busy week. My mom and best friend were here for a few days. My best friend has 2 little ones, a 4-year-old son and a five-month-old daughter. Jakob did really well with them. He actually paid attention to the baby which is a first. And he played with Greyson a little bit. They seemed to do best together when we were in another room and they didn’t know we were watching. They’d read books together and it really seemed as if Jakob was trying to have a conversation with him. It was really fun to watch. I do have to say though that it’s at that point where other kids really notice that something’s not right with Jakob. They get frustrated with him cuz he doesn’t talk or play the way they want him to. He’s definently getting better but we have a way to go.

Jakob did pretty well with the ADOS. The therapist was pleased with his eye contact and his intent to communicate (even though it was non-verbal). He didn’t do too well with pretend play but we knew that would be a challenge. He just started doing a little bit of that at home.

His OT in private therapy (who we LOVE) also did an assessment on him last week. I haven’t read the results yet but she told me that he did great…even tested close to age appropriate in some areas. That is such a huge accomplishment since he wouldn’t even sit still long enough to take the test a year ago.

As I try to write this, I’m getting phone calls and I swear people around me are acting like the world is about to end. I’m gonna have to take care of some things and I’ll write again by the end of the week. I feel so bad for being so far behind on everything. If you’ve sent me an e-mail in the past week, I’ve read it and I promise I’ll get back to you as soon as I can. It’s very important to me that I write back!