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.)

-Jenn