Tuesday, January 25, 2005

January 25th, 2005

Today is Tuesday. Yesterday was Monday…my son doesn’t like me on Mondays. I swear…every Monday he’s mad at me. Kenny picked him up from school yesterday and he fell asleep on the way home. When he woke up, he gave me this disgusted look and walked away. He ignored me and kept going to Kenny when he needed something. Most Mondays are the same story. I think he’s mad at me because I wasn’t home when he woke up in the morning like I was on the weekend. He’s mad and he’s making me pay. Turkey butt.

It took a couple of hours to turn him around and when I did, it was really sweet. We’re in the last couple of days of the Sensory Learning Program and part of the program consists of sitting in a dark room for 20 minutes and looking at this magenta light. Well, I was in the closet with Jakob looking at the light and he finally decided that he would acknowledge me. He pulled me closer to him, sat on my lap and nuzzled his head in my chest. He grabbed my arms and wrapped them around his tummy. The affection he now shows is awesome. For so long he didn’t want to be touched or held…now he asks for it.

To top off the whole closet experience, he started playing with my necklace. He was all snuggled up with me and he was rubbing my pendant that has the word “believe” engraved on it. I took that as a sign that he wants me to keep believing. So I said, “you got it, buddy” and gave him a big bear hug and a kiss. God, I love that kid.

That’s my happy story…I like happy stories the best. I’m not big on complaining. Complaining exhausts me and I don’t have the time to be exhausted. So I will keep my complaining to a minimum.

I hate insurance companies…hate them. How can an insurance company deny speech therapy to a 3 ½-year-old who’s never spoken a word???? Trying to deal with the insurance company has been beyond frustrating. One day they say this, the next day something different. I don’t get it and I don’t like them, I get very upset over all this hassle. I just try to keep it in perspective…there are so many families in way worse shape than us. There are kids who need a lot more than speech therapy and they don’t have any insurance at all. I remind myself of that and then I remind myself to “breathe”. I’ve been breathing a lot. It really seems to help. Breathe. One more for good measure…breathe.

Moving on…

I have to say that the toughest thing for me this week has been trying to prepare Kenny for this test tomorrow. I just don’t think he’s grasping what’s going on. I love the fact that he believes that everything is gonna be alright…I believe that too. But I’m also well aware of what we’re up against. I know what Jakob’s current limitations are and I know how to get the most out of him. I can’t tell you how many times Kenny has said “Jakob’s just a normal 3-year-old that doesn’t talk”…I wish that were the case. It’s not. Jakob has special needs and I so desperately need Kenny to accept that so we can both do everything we can to help him. But…Kenny’s a dad who adores his son more than anything. He doesn’t want to accept it. I get that. I just don’t know how hard I should press the issue and how much sugar-coating I should do. Do I just lay it on the line?? I almost think I have no choice…I’ve been trying the subtle approach and it hasn’t gotten me very far.

The worst part is other people are noticing his denial. Friends, therapists, family. I try to explain to them where Kenny’s head is at but it’s hard since I’m so frustrated with him. It’s at the point where Kenny’s inability to see Jakob for who he is slows me down.

Kenny questions every move I make with Jakob. For instance…Jakob can’t focus on anything if the tv is too loud. When I’m home alone with Jakob, the tv is on a music channel and it’s very soft. I ask Kenny to turn it down and he gets mad. I explain to him that Jakob can’t concentrate with the tv so loud and he says that Jakob needs to adjust to his environment. Wrong. Jakob is different and we need to accommodate his needs. It’s not about us anymore…it’s about Jakob. So…we argue. I give up and Jakob isn’t able to focus on what I’m trying to help him with. Here we go again…I’m getting riled up…breathe…breathe…breathe…

I may have to call in for back-up…I just hate to put anybody else up against Kenny…he’s a tough nut. Not many people can handle him…maybe I’ll call his family.

One thing I will say about Kenny…I’ve never known a more loving father. He adores Jakob, it’s obvious. He just needs to learn to love Jakob more on Jakob’s terms than his own. I’ll keep working on that.

This afternoon I’m gonna mentally prepare myself for the ADOS. I’ll also continue to breathe…a lot. And as I breathe, I’ll try to keep in mind that it’s all about perspective and all things considered, I got it pretty good.


Wednesday, January 19, 2005

January 19th, 2005

The past couple of weeks have been wacky. I’ve had more mood swings than I can count. It all started when I made the appointment for Jakob’s autism test (ADOS). We’re going to the Kelly O’Leary Center on January 26. I have moments when I don’t really think of Jakob as “different”…he’s just my Jakob. But then there are heart-wrenching moments like making that appointment. I know what’s coming…several people who know a lot more about this stuff than I do are going to sit down with him and give him a label. I’m not looking forward to that. I know we have to do it and I’m probably being a little overly dramatic about it but still…I’m not ready to see it on paper.

So I react to this label thing when I’m all alone…I just kinda go numb. I go through the whole “why Jakob?’…”why us?”…”why me, why was I chosen to raise a child with special needs?” It’s never a feeling of pity for any of us…just me trying to figure out why. The only answers I’ve been able to come up with are…I’m a pretty positive person, always believing that everything’s gonna be alright, I’m patient, nurturing and obsessive-compulsive. I think the best answer is the last one…OCD. When I get focused on something, I don’t quit. Once I accepted that Jakob needs some extra help, I went into overdrive. The reading, the observing, the shopping for learning tools and the persistence…I make Kenny crazy. But now that I’m fully committed, there’s no stopping me. Just thinking about all I want to do today with Jakob makes me tired. I need a nap…won’t get one but I sure could use one. That’s something else I’ve just learned to accept…I’m just gonna be tired. And that’s ok, if I’m helping my son, I can handle tired better than I can handle feeling like I’m not doing everything that I can to help him.

My latest kick is kinda silly but it seems to be helping…I’m putting these inspirational messages all over my house. I’ve started a collection. So far I have “We Believe In Santa”, “Faith”, “Relax”, “Dream”, “Simplify”…”Normal is just a setting on the washing machine”…and I’m still shopping. I’ve also acquired some jewelry…a necklace that says “Believe” and a ring that says “Intuition”. Silly but it really does seem to help.

Luckily, my mood swings have been hitting more highs than lows since I made that appointment. And I have three words that I hold responsible…Sensory Learning Program. I am living with a different child than I was living with in 2004. He amazes me every day! Just in the past few days he’s done so many things that I was afraid he would never do…played with other kids, let the doctor within 2 feet of him, let the doctor look in his ears and listen to his chest, played his cymbals, sat in a room full of people, made eye contact with people he’s never even noticed before, gave the doctor a “high-five”, sat down and ate with other people at the table, played patty-cake with the neighbor. The list goes on.

His behavior totally shocked his pediatrician. She couldn’t believe he was the same child she saw a couple of months ago. Before Sensory Learning, we couldn’t get him in the exam room. Once we’d drag him in, he’d scream so loud and kick so hard that it would take 3 of us to hold him down so the doctor could listen to his chest. It was awful. Yesterday he followed the light with his eyes, touched it and let her stick it in his ears. Wow. That’s all any of us could say. Wow. Not one cry. He was always fight or flight…there was neither. Wow.

Jakob has pink eye and an ear infection so the next couple of days we’ll probably just hang out. Now that he’ll sit still for more than 2 seconds, maybe we’ll do some reading or hit the play-doh.
I’m sure that by tomorrow, I’ll have pink eye and some sort of sinus thing. Being sick always makes me cranky. And when I get cranky, I get depressed. So I plan on sitting in front of my “Faith” plaque and rubbing my “Believe” necklace. Whatever it takes!

Sensory Learning Program. TherapyLearningCenter.com. I’ve promised the two wonderful women in charge there, Susie and Barb, that I would speak at their next informational seminar. I will let you know when and where. It has changed our lives.

(And for the record…I endorse this program on my own. I have not been asked to talk about it nor have I been compensated in any way. The Sensory Learning Program has done more for my family than I would have dreamt possible. Maybe it can do the same for your child or a child you know and love. There are so many doors that have been opened for Jakob through this program, I couldn’t be more thankful.)


Tuesday, January 11, 2005

January 11th, 2005

Wow. I’m officially overwhelmed. There are so many things going on in my house right now, it’s very hard to keep up. Luckily, it’s all good. I’m not really sure where to start…it’s been such a rollercoaster for the past week. Ever since we started the Sensory Learning Program with Jakob, every day he’s doing something new…his awareness is so much greater, he’s calmer and happier, his focus is better, transitioning is so much easier…I honestly am living with a different child in so many ways.

Here’s what I mean…yesterday after his nap, he woke up slowly (like he always has) and we put him in front of one of his favorite videos (which we always do…part of the routine). Normally, he’d get excited, jump up and down (hand flapping), squeal, run and crash into the furniture. Not yesterday. He sat on the couch. He was calm, watching the video and smiling. Totally focused but aware of everything else going on around him. This went on for 30 minutes…that never happens, sitting still for 30 minutes. I started to worry…was he lethargic? Did he feel ok? Did he have a fever? Did something hurt? Did we need to rush him to the hospital? I really started to get concerned. Then the video ended. He got up and started to play with his farm puzzle. That’s when I realized he was fine, he was just chillin’ and watchin’ a little tv. Wow.
To parents with “normally developing” children, what happened yesterday is probably no big deal. In our house, it’s a huge change. The hundreds of hugs and kisses we’re getting is a big change. It’s as if in Jakob’s 3 years with us, he was aware that there were these 2 people that were always around. They gave him food, juice, toys, changed his diaper. He heard sounds but wasn’t really sure where they were coming from and didn’t know what they were saying. He didn’t understand that our words had meaning. He was just floating along in his own little universe oblivious to the world around him. Now, after this therapy, he’s starting to make those connections that weren’t being made before. He knows who his mommy and daddy are and that they love him very much. It’s so cool. It’s beyond cool, it’s amazing and awesome.

I could go on and on. Every day I’m seeing at least 3 or 4 changes in him…I see him do things he’d never do before. It’s so encouraging and I get so excited to see all the hard work pay off. What’s so hard for me to find is the balance. Kenny and I disagree on this regularly. When I see a chance for me to “reach” Jakob, I jump. If I see him start to pretend play (which he’d never done before last week), I watch for a minute then I jump in and take the opportunity to play with him and I try to help make a “connection”. I hover and watch at all times just trying to figure out what he’s thinking. I’m “working” with him but I never force him into anything. I always make sure whatever “learning” activity we’re doing is also fun for Jakob. If it ain’t fun, we ain’t doin’ it.

Well, Kenny thinks I’m smothering him. He wants me to just kick back, relax and let Jakob be a “normal 3-year-old little boy”. I just can’t do that. My need to help him is overwhelming…I feel like I have to do everything in my power to make his life better and easier. It’s my #1 priority and if that means that I don’t get to watch Oprah…oh well. And if it means I have to go shopping again today because he’s showing interest in touch and feel farm books and he’s trying to make animal sounds as he flips the pages but he doesn’t have a piggy book and I need to find a piggy book then I’m going to Barnes and Noble. If it means that the dishes aren’t gonna get done right after dinner, big whoop. In other words, whatever I have to do, I will do. And quite frankly, I’m enjoying it…seeing him having fun and learning at the same time is the best. Do I sound defensive? I hope not because I’m not mad…I’m just determined to do what I know in my gut is right. I know Kenny doesn’t understand my drive but I’m not sure how to communicate it to him. I guess I’ll just keep trying.

Jakob starts back in occupational therapy this afternoon. I’m curious to see what all he will do.
Between now and then, I’m stopping at Barnes and Noble…I gotta get a piggy book.


Tuesday, January 04, 2005

January 4th, 2005

My vacation with Jakob was amazing. There’s nothing better than seeing that smiling face first thing in the morning (especially when first thing is 7am!). It’s so nice those few weeks out of the year when all I have to do all day is be a mom.

We had so much fun…he was in such a good mood, laughing all the time…that big belly laugh that just kills me. I sorta got him interested in opening presents, obviously some things he liked better than others. If it had lights and made music, he was all about it. He wasn’t too excited about books…not a big shocker.

My parents were in town for a week and Jakob just loves them. My Mom has such a calming effect on him and Dad just makes him laugh. Dad’s 6’4, so Jakob loves it when he picks him up…he’s so far off the ground! Dad loves to tease him and get him all excited…Jakob gets frustrated but always comes back for more. Mom bakes him cookies and gives him anything he wants. They do exactly what grandparents are supposed to do…spoil him rotten.

One of my favorite moments…I was taking down the Christmas decorations and on the fireplace I had hung a sign that said “We Believe in Santa”. I had the sign in the kitchen and I was getting ready to put it away in the basement. Jakob grabbed the sign, handed it to me, took my hand and walked me to the fireplace. He was making it pretty clear that he wanted me to hang it back up…so of course I did. He started jumping up and down and squealing… “We Believe in Santa” is now a year-round decoration…

We’ve started Jakob in the Sensory Learning Program at the Therapy Learning Center in Lebanon. The results that we’ve seen so far are amazing. There are so many things that he’s doing that he’s never done before. The easiest way to describe it is he’s “with us” more…he’s more interactive with us, not just off in a corner in his own little world. He’s running up to give me hugs and kisses…something he rarely did and now it’s a regular thing...I can’t even count how many times I’ve gotten teary-eyed. At this point, we’re only 9 days into the 30-day program and I couldn’t be more excited about the changes I’ve seen. I can’t wait ‘til we’ve completed the program and I can write all about it…I look forward to sharing all the results with other parents who are desperate to help their kids who may be having sensory integration issues like Jakob. There is no greater joy than working so hard with your child and seeing positive results. There’s no greater reward than a giggle and a big bear hug…