Jakobs Journal

A Snippet from a Speech I Gave at the Remarkable Families Symposium at Xavier University Last Friday…


(This is just part of it…this is the first time I’ve shared some of these thoughts and I have every intention on going into more details about them in the future…I’m so excited to finally be talking about some of this stuff!!)

The two years following his diagnosis were pretty dramatic for me…I was a mess. I was desperately searching for answers, trying to find anything that might help him…I listened to a lot of the “experts”. I tried things that I didn’t like, treatments that didn’t feel comfortable to me, something inside of me was saying “not this one”.

Going against my gut was exhausting…as was getting less than 4 hours of sleep every night, working full-time and trying to maintain relationships with people who had no clue what I was dealing with and certainly didn’t wanna hear about it. To say the least, my relationships suffered and I was miserable. But I believed that that was how it was supposed to be…parents of special kids sacrifice, they give all they have to their kids, they venture down every alley to find the answers, they fight the power, they advocate, they curse God, they are victims…

Then one day, when I was feeling particularly wiped, pretty much slap-happy and borderline insane…I may have been self-medicating, I’m not sure…but I decided enough. No more. I’m no victim here…and neither is Jakob. Life is supposed to be fun and from this point forward, I’m gonna focus on ways to make it fun. I’m gonna do whatever I gotta do to figure all this out, to get myself straight and lead a life filled with joy and love…not fear and anger.

I started looking for the lessons that I believed Jakob was sent to teach me…patience, compassion, understanding, acceptance, unconditional love. Those were pretty obvious but I knew there was more.

So my greatest studentship began…my quest for inner peace and happiness and basically, the meaning of life. I buried myself in books…self-help, spirituality, meta-physics, quantum physics, vibrational medicine, anything to do with the mind-body connection, anything to do with self-empowerment…anything my gut told me to read. I listened to all kinds of stuff in the car. I went to seminars where I walked on fire, broke boards and bent re-bar with my throat. I searched all over…and I found a lot.

I discovered that I’m a lot stronger and smarter than I thought I was and that the saying “attitude is everything” is true. I realized the power of my thoughts. I witnessed how my moods directly impacted Jakob’s. I learned what it really meant to be present.

Being present…such a simple concept. Not always easy to execute. Guilt and worry were big for me…guilt about Jakob’s Autism…did I cause this to happen? Is it my fault? And lots of worry for the future…will he get better, recover, be ok after I’m gone?

Guilt over things that had already happened that I could nothing to change and worry over things that hadn’t even happened yet. Both a waste of precious time and both taking me out of the present. Both making me miss the only moment we ever really have…the now. This is all we have control over…what’s happening now…and now…and now.
Make the best of now. If I run some nows together, then I’ll have a wonderful hour, or day or week.

And I found that being present is the best gift I could ever give Jakob. So I do my best to give it to him every chance I get.

I figured out that every problem I had, there was a solution and for every question, there was an answer. I just had to stop whining and fretting over the problems and questions long enough to find the solutions and the answers.

I found that wherever my questions began, they all ended up in the same place…what do I believe? Since I know that I create my world and I lay out my path in life with my beliefs, I figured that knowing exactly what my beliefs were would be a good place to start. I also knew that a belief is just a thought I keep thinking and I can change my thoughts. So if I come across a belief that wasn’t serving me, I could change it. Very empowering.

And I realized pretty quickly, uncovering my little beliefs always led me to my big ones…the really big ones. Questions like…does God really not give us more than we can handle? (no) Does God give special kids to special people? (we’re all special) Do I believe the universe is benevolent or manevolent? (Definitely benevolent) Do I believe God is a loving God? (absolutely) Why would a loving God send a precious being here flawed, disabled?

I don’t believe a loving God would. So that really got me thinking…if Jakob and others like him aren’t flawed, maybe they’re advanced. Instead of being less or labeled “dis”, maybe they’re more.

So I started looking at Jakob in that light…that he’s here to teach me more than I am to teach him…and I started clinging to that thought… especially during our most trying times.

One of the more dramatic times was when Jakob went through a phase where he was hitting…with an open hand…hard…straight to the nose. He was 7, good-sized and strong.

The standard ways of teaching a child not to hit did not apply to him. Time-outs, grounding, yelling, taking toys away…please. No. And what we found was reacting in any way just perpetuated it. He was looking for a situation that he could control.

People with Autism find the world to be very unpredictable…and Jakob knew that if he hit somebody, he would get a reaction…that gave him the feeling of control. He wasn’t being mean, he was actually doing something to take care of himself.

Knowing that about Autism, I had to get to a place, deep-down inside where I was ok with getting hit in the face, more than once when I thought he broke my nose…eyes watering.

And when I did, it was amazing…as soon as I became ok with it, stopped judging it as “bad” and became loving and comfortable, the hitting stopped. When I just stood up, moved back and said “I’m just gonna move over here because I prefer gentle touches”, I swear he looked at me and even though he couldn’t express with words, I knew he was thinking “nice job, mom, you’ve just learned to be ok no matter what is happening to you, that things are not always as they appear…and that no one can hurt you unless you decide to be hurt”…profound moment.

I never would have dreamed that a pop in the nose could turn into such a learning experience. And there have been many more times just like this one…well, less painful, thankfully.

I believe our kids are here to teach so much more than we’ve even begun to imagine. Big stuff. And I know that’s why there are more and more of them… for Autism, it’s now 1 in 110 children, 1 in 70 boys…more teachers so more of us can get it. And what do I believe we’re supposed to get??

Well…Jakob is teaching me non-conformity, for one. He is a child who has come forth so different, that we cannot force him to be like anybody else. He is a square peg that will not be fit into a round hole.

He is going to do what he wants to do when and how he wants to do it. He is the poster child for “following your bliss”. He is going to do what makes him happy no matter what anybody else thinks. And if we try in any way to push him to change, he digs his heels in and does not budge. I have to respect that.

I think about how many times I have done things to please others instead of doing what I really wanted to do. Instead of doing what I knew was best for me, instead of doing the one thing that would bring me the most joy. Jakob came here hard-wired for that to not happen to him.

He’s teaching me to be myself, to be authentic, to find what makes me happy regardless of what others think and he’s showing me how to follow my bliss.

He is teaching me to let go of control…I’ve realized that it’s exhausting to try to control him…and impossible. He has shown me that the only thing I have control over is my reaction. And that applies to everyone and everything that happens around me. “I give up” has become a favorite phrase of mine…and what a great feeling it is to just let go.

Through his refusal to conform, he is teaching me that I am responsible for my own happiness. He’s certainly not bending over backwards to do things that will make me happy…because he can’t make me happy and it’s not his job to.

Happiness comes from within and it’s my choice in every moment whether or not to be happy in that moment.

And I really love the flip-side of this one…I am not responsible for anyone else’s happiness. That’s a relief…no more bending over backwards to please people I never really could please anyway…

Thanks to Jakob and the journey he and I have been on together, I have changed the way I see the world and all the people in it. I have really decided what is important to me, what life is all about, who I really am and what I really want.

And it’s funny how things work out…he inspired the path for me to follow for my life which led me to an Autism treatment that is inspiring him to leave his world of Autism and play here in my world with me. It’s a treatment based on being present, loving, accepting and non-judgmental.

A treatment where we are so focused on the now that we completely detach from the outcome. If Jakob doesn’t change from how he is right now, that’s great. I already know he’s perfect (and I’m pretty sure he knows that too). The decision to change is his.

I can only open the door to my world, it’s up to him to walk through it. And I open that door with my belief in him that he can be, do and have anything he wants. When I live the lessons that he’s teaching me, I know anything’s possible.

Ever heard the saying, change the way you see the world and see the world change? Well, I have changed the way I see the child and I have seen the child change. And I believe change can happen with any of our kids regardless of their diagnosis. The greatest change of all is for them to experience more joy and peace in their lives.