Jakobs Journal

March 3, 2009…an event


“Mom, I want 4 hot dogs”. I decided that hot dogs is 2 words so that’s a six-word sentence. Impressive. Jakob is doing just fabulous. The language is exploding. He wants so badly to be understood. He’s trying so hard to speak clearly. The receptive language is unbelievable. More and more, he’s joining us in our world.

I went to a Biomedical Conference in Detroit a couple weeks ago. Scary stuff. I could write a book just about everything I learned there. So…for starts, Jakob’s seeing a chiropractor, we’re really working on detoxing him and I’m getting rid of more toxins in the house (like plastic plates, paper towels and so much more). And I’m gonna get serious about Hyperbaric Oxygen Treatment. That’s a good start.

We had our Kickoff Luncheon for our 2nd Annual Walk Now for Autism with Autism Speaks on Saturday. Great crowd. Great people. Great committee. Great fun. Here’s my speech…sort of. Of course, once I get up there, I tend to go off on a tangent or two but this is pretty much it.

It’s been 4 years since we received Jakob’s diagnosis. I lived 35 years before learning my only child had Autsim but those 35 years are a blur. I find it very difficult to remember what my life was like before words like “ADOS, sensory integration, speech pathologist, DAN doctor, gluten-free/casein-free, OT, PT, ABA, Son-Rise, methylation, B12, HBOT, floortime, RDI, infra-red sauna, chelation, glutathione, mitochondria, thermerisol”…that list can go on and on and on. And I think that’s what has made the last 4 years seem like forever. It wasn’t the diagnosis that was so devastating. It was actually a relief…we finally knew exactly what we were dealing with. It was the prognosis that was so hard…no one could tell us what therapies to try and no one could tell us if any of it was gonna work. So the trials began and continue to this day. Therapeutically, we have found what works for our family and Jakob is doing just great. Now we just have to get him feeling well on the inside and we’ll be in business.

One thing I know for sure is that even when we find the best treatments for him…what we think will help him the most, Jakob will get better only if he wants to. I can love him, accept him just the way he is, be an example of happiness and joy and fun for him. I know that what I model, I teach so I wanna model easy-going, calm, flexible. I can create an environment for him that’s condusive for him to want to leave his world of autism and join us in our world. The rest is up to him. I can open the door, he has to make the decision to walk through it.

That’s tough too…not being able to swoop in and fix it. Cause as a parent, that’s what we wanna do. And it can be real easy to beat ourselves up when we don’t have the answers. Throw that in the mix with the guilt and worry and the anxiety, frustration, sadness, pain…we can really do a number on ourselves. Add in the financial strain and the lack of insurance companies wanting to cooperate…no wonder the divorce rate is 85% the first 5 years after the diagnosis. The challenges we face, there are more than a few.

Another thing…

I don’t remember the details but I do know that in my first 35 years I had a social life. I had lots of friends and we would go places and do things. People would come over to my house and hang out. Not so much anymore. What I’m doing here today, this is my social life. And I only allow people in my house who are loving and accepting toward Jakob. And as you all know, people like that are few and far between. It can get lonely and it can rough when friends and family have no clue what our life is like no matter how hard we try to explain it to them.

Luckily for all of us, we have each other. Look around this room. We all get it, We all support each other. We all understand. We all want to help make things better and make life a little easier for all of us, especially our amazing kids. Because when all is said and done about how tough our lives are and how tough this prognosis is and how tired and beaten we are, we have it easy compared to our chilfdren.

They are doing the best that they can in a world that they simply do not understand…a world that they experience completely differently than we do. More than likely, they just don’t feel good. Something inside of them is hurting and they just don’t know how to tell us. There’s so much going on with them that we cannot even begin to comprehend.

I really think it’s time for all of us to be more compassionate and understanding with our kids, be more loving and accepting. Let’s set an example for everyone not living with autism…like the person in the checkout line at the grocery store who gives us the look or the lecture. Let’s teach everyone we can that our kids are doing their best…and so are we. Let’s always find things to appreciate in our kids. Let’s look at all the amazing things they can do. Let’s remember the things they do that make us laugh. Let’s celebrate their uniqueness. Let’s cherish their smiles. Let’s enjoy them.

As for all the other stuff…like legislation, research, insurance, awareness…let’s let Autism Speaks handle that. Let’s support them so they can help us help our kids. Let’s support them so they can take care of the big stuff and we can have the time and the energy to do for our kids what they want most for us to do…be with ’em and love ’em just the way they are.