The Inside Scoop

My Mom writes about it sometimes.

The Beginning

It is hard to know where to start, so I will begin with the nightmare.

I don't know why I am so emotional these days. I get like this every August I think. It’s a reminder of how far we have come but also a deep sadness because the wounds from battle haven’t healed yet. I feel like I am crying or waiting to cry! It’s exhausting. I look at Dane and I am filled with this love hate waterfall!  

I remember it all so clearly. His first step, his first seizure all in the same week! The 9-day hospital stay at Tallahassee Memorial. We had come to visit my Mother and I was napping because he had been a nightmare due to teething and possibly just being Dane. She screamed and before I knew it we were in an ambulance and we were on our way. I have never been so scared in my life.  I can see it and feel it like it was yesterday. I was sitting on a gurney in the ER panicked and devastated.  The grey lights and the haunting smell of that hallway. I was crying and praying like I never knew possible. I had never seen anyone have a seizure. It was like everything I was told in Sunday school about someone being possessed. Uncontrollable shaking and eyes rolling, it just kept happening, on the hour every hour.  And then they moved us to the ICU, where I stayed never leaving his side. With all the monitors and testing, spinal taps, EEG test after test and more tests becoming my comfort because maybe they would find an answer to my beautiful boy. Maybe this test would fix him. Little did I know then there was no fixing only enduring.

 I was 24 at the time. Listening to Doctors put the fear in me about all the medications they “needed” to give him or he’d become “status epilepticus” and never stop seizing. The meds may shut down his liver, kidneys or rot his teeth out but it was our only option. We had to give him these medications we had to. They told us to make the seizures stop.  What they didn’t tell us was 70% of epileptics on medication still have seizures and most are on multiple medications.

 So here we are 22 years later and I am proud of US.  God whispered in my ear on day, “You must find Joy in this Journey”. And I do.  Joy for having a son that is filled with JOY and Perseverance that has given me purpose even though I get pissed off sometimes because it's not the purpose I wanted.

It is far more meaningful than anything I would have chosen anyway.

 Life is funny that way isn't it? Surprises around every corner!  Who would have thought I'd be married to the most amazing man and live this life of privilege entwined with all this hardship! I suppose God wanted to keep me from getting bored.



Dane Capo
Mr. Schwab and Dane

There once was a funny little boy that had a hard time in an ordinary school.

He was obviously very bright but his head worked a bit differently than the ordinary children around him.  He was not interested in the math they taught or how they got their answers because he was busy doing his own math and getting the same answers.  His mother soon realized this was not the place for him and decided to homeschool her son.  She was not so bright that she would do this herself but she could hire a collection of interesting people to push her son towards the love of learning and develop into the person she thought him to be.

Through this process Dane was growing food and selling what he grew on a farm stand in the front yard when he was 9. He saved his money to open his first bank account and walked around for years saying “I am a saver not a spender.” “I will invest my Money.” He set a goal to have the right amount of money to open his own investment account the day he turned 18.  And so he did just that. He became obsessed with banking, money and investments.

We created a curriculum around Dane’s interest, which led to science being about plants and food while his math was based on investments and banking.

One of his teachers had the ingenuity to create an art project around all of his favorite companies.  He researched the history and facts about each company, which is when he learned about Mr. Schwab and his wife Helen. I remember him telling me they live near San Fransisco and he tried to Google addresses and phone numbers and he has even begged the manager at the local branch how could he meet him.

I would hear him on the phone in his room at night around 10 pm and discovered he was having conversations with Charles Schwab 1800 number every night.  This has gone on for years and continues today.  My husband and I laugh and wonder if they see his number come up and take turns dealing with all of his inquiries.  It is no surprise that when Dane started painting he painted Charles Schwab! What was a surprise was the phone call from The Schwab Residence and their personal assistant asking if the painting was available for purchase. Helen Schwab bought the portrait of her husband for his birthday! How incredible is that!!!


Dane Capo
Jumping In

I am so tired of waiting for someone to change Dane’s circumstances. Waiting for him to figure out how to attend a class, waiting for someone to hire him, waiting for the seizures to stop, waiting for him to move out. YES he will move out. The two years have just been a whirlwind.  Preparing for me to go to Africa and leave him here or that advance LA place was a road of its own. He hadn’t had seizures for years, he got a job and was being diligent about taking care of himself independently. I was so proud and saw such a bright light at the end of the tunnel. I would get to live alone with Gary. I would get peace and quiet. I would get my own life outside of Dane. What I got was 10 weeks in South Africa and a return laced with devastation and despair. The seizures were back and he was a mess. The disconnect of everything and not being able to grasp things had returned. I started all over preparing for his life again. Nurturing when he was sick to whipping him into adulthood when he was well. It is such a tightrope dance Dane and I do. Last night he says I love/hate you. I said I feel the same. It is true.

Here we are March 2015 and he has a shopping compulsiveness that is off the charts. He is bored.  How many people shop when they are bored? Probably A LOT. I am working on replacing the behavior with his art business. What I have learned from him is that unless I find a replacement behavior that gives him as much emotional stimulation as the one he is doing, it will never end.  So, the launch of Dane Capo Art gave him that input he needed. It was like he was on a good drug. He was flying with confidence while gliding through the crowd with excitement that the people came to see him and his art. He worked the room like a master. I saw light again at the end of the tunnel; and so, I jumped in.

We went and had cards made for him to sell at his art show. He sold them, well, so now what? We are having reproductions made and some reusable shopping bags that he will sell at his booth at the farmers market Friday. I am doing some all the footwork and letting him do the rest. So now we are back on the tight rope. What can he handle? What is too much? When can I not do this anymore? Will he ever fully invest and take over or will he be onto the next scheme of his. I don’t know. What I do know, is life is better than it was in many ways. He has come so far from where he started.

Our journey is filled with determination and courage to keep forging the way. 90 percent of kids with autism are unemployed. 90%!!!!!! They have hopes and dreams and skills and talents beyond measure but 90% of them never get to shine. I am so grateful that even if just for a moment Dane has made his own path, and is using his skills and talents to further his independence and his life. 

Dane Capo
Autism, get over it.


I am continually asked to write about autism and my son. 

 This is what comes to mind. And I believe most people wont like it. You see yesterday I was watching this video by a large non profit solely dedicated to autism. It pissed me off so royally I had to rant about it. You see the woman in the video made this comment “suffering because of autism”.

So here it goes. My opinion!

I do not believe anyone is suffering from autism. Every autistic person I know is happier than I am. They don’t know any better. They live in a world of their own that is much happier than the world I reside in. In reality and in my head! Haha.

My son for instance does not see race or age or sickness. He sees no differences in rich or poor fat or skinny, beautiful or ugly.  He just sees people! What a gift!

See the only time my son ever “suffered” was when I did not accept who God made him to be!  See God allowed my son to be born with Autism and then chose me to be his mother. Go figure!  Once I realized he would never be put into some box that our society has cut out for most of us I was able to accept who he was meant to be. He is smart, in a way that cannot be measured by our education system. He is social in a way that doesn’t meet the norm (because of the things I mentioned above). He is endearing and love-able. He is kind!

The suffering I mentioned would be the years He was in school. Having the teachers tell him he was different and not like it was a good thing. Choosing not to give him assignments that the other kids were given because they decided he was retarded and couldn’t do it. Over and over everyday being told or shown that you are not like everyone else and that it isn’t okay, it ruins the spirit. By 5th grade my son had quit talking. He refused to go eat lunch in the quad. He refused to go out on the play ground. I had let the school people define him in the 8 hours he spent at school everyday. I had failed him! 

We left school 6 weeks before the year ended and never returned. My son is 16 now and more confident and capable than I. He has a job at a local pizza shop. He is working on a client list for grocery shopping for people. He takes the bus and gets paid by his customers to shop. He loves it!

Dane Capo

As everyone is school shopping and college touring, I’m trying to figure out how to get around the world to see my husband in the next few weeks.

I was taking my son who will turn 18 this week to a program specifically designed for high functioning young adults. It is a transitional living program. We did the tour and initiation and have committed to this while living situation while my husband and I go work in South Africa.  Even our son thinks it’s a great idea because he doesn’t want to go with us. (seems perfectly normal for an 18yr old)  

2 weeks into this process, I am told by this program that it is probably not a good fit. They don’t know what to do with him.  I freaked out. My public school didn’t know what to do with him. The End all Be all of autism agencies doesn’t know what to do with him. So, here I am, stunned and rejected and hurt. His grade school friends don’t know what to do with him. His uncles don’t know what to do with him. Most of my friends don’t know what to do with him. Shall I go on b/c the list is very long. 

The Tight Rope

Letting things fall away as I focus on my path and my son. Watching it fall and shatter because I can’t handle distraction or judgement. I can’t handle the pain and loss. I can’t handle the lonliness I feel because I am alone in this mess. I can’t handle most of all rejection right now!   I have to turn inwards and focus on that rope. My life line. Dane’s future. If you are not with me in my plan then you are against me and I can’t have that right now. I need support and encouragement. We need I can! We can! HE can. NOT he can’t do that, you can't… 

We are at a crossroads Dane and I.

I look at him and I fall to pieces! He is so resilient and uninhibited. He is kind and thoughtful. He is brilliant and creative. He loves people,even after all the rejection. I hang on to this while I teeter on the rope, it is my balance. We have come so far because of my love and ability to adapt and overcome all that is placed before us. It is because of my belief that God has a plan for my son greater than all the people that have dumped him. God has picked some amazing human beings to stand by us move our journey forward. And for that I feel blessed.