So a letter  via email comes in to my mailbox today. A letter from a producer with ties to primarily PBS networks....
  "We would appreciate the opportunity to present your son in part in a documentary pertaining to the struggles of special needs children and their families in the current economic times that  we face today with government and social support. Your son in particular has had a dramatic and inspirational journey. "
  At first I was excited to know that my story of my son was heard. But it took no time for my true thoughts to kick in.
  Cully is unfortunate to have been a child to go through all that he has. And selfishly my wife and I have been unfortunate to have gone through all we have with him......  Or have we?
   But.......
 As we try to gain a footing after the expense of all we have gone through, one thing we are not is selfish enough to think that our story is one that deserves the headlines.
  We are in dire straights right now. I have never found myself in such a position as that of where I am now financially..... But I am in no way one that can be compared to so many others right now.  Perhaps something I wrote was lyrical or rolled off the tongue just right but there are so many others that need to be thought of right now.
 Julie and I met so many others whose struggles continue much further than us.  We have been so lucky with Cully and his progress.
  Bethany in New York has come so far and is fighting to overcome so many more issues right now. And Trevy, my little hero has made so much progress with his infantile spasms and all the hardships that come with it.... And the family around these children are so strong and committed...  
  The answer to the email I received is this....
  " Thank you for your interest in our very special son. We think it would be favorable to your interest to take a moment to look at a few other families who are dealing with similar issues at this time. We have been very lucky with our son and his health but think that others have had a much more intense and COMMITTED road than ours.  While we do not think that our wonderful son Cully deserves any less than all the hugs, kisses and praise that your audience would allow, there are others who have more to share.   Please take a moment to see the few people we are including in our response and give them a moment of your time to see the struggles that they have to deal with each day and the unknown future they have to focus on.  While we are still in an uncertainty with our son I think you will find the heart felt love, compassion and uncertainty that your viewers will appreciate and hold compassion for in the families I mention.. And as for us, they are our friends and support."
 I have not yet received a reply.
  I think that Cully is due for some make-up for all he has gone through...  I do not think that this is what it takes.  And when I have two nickles to rub together I hope that Cully can hang out with a couple cool special kids that we have come to know... And that is the sort of morals that I hope to have taught my autistic child. Through what ever channels it takes...  That will make me the Daddy I want to be....

Out of the fire and into the pan

   Nothing but progress with Cully each day. We have been seizure free for more days than I am counting now and as you can see he has lost all that chubby fluff that he gained from the ACTH treatments. A well proportioned body and a very outgoing personality has taken place of what once was a 62 pound horribly uncomfortable child with tears and fear.  And Mum and Dad have lost that panic induced adrenalin rush and all the other emotions have come flooding in to take its place.

  Cully has been attending his school each day and is no less eager to step onto the bus each morning as he was the first day he climbed on and never looked back. His participation with his new found friends and teachers has been wonderful. That very unique character that Cully possesses to comfort and his "Big Brother role" to everyone has become his trademark.  Another student in special needs, another autistic boy who carries the common unsocial personalty of an autistic child, has become close with Cully. A boy who does not care to be touched or interact with any other children or adults has connected with Cully from day one. Cully can touch his face, hold his hand and interact well with him. One example that has surprised everyone is when he brought a toy over to Cully and asked him to help him open it. Cully did and handed it back to him and off he went to play.  Cully has a special trait.

  Night time for Cully tends to be full of nightmares and sleep issues. He is handling it well and you can find him taking control of the situation many times as he amuses himself with his toys behind his closed door. It is not uncommon to wake to the sound of Cully playing. 3 am this morning we heard him playing basket ball. He had taken an empty bucket and hung it from the closet door. He would toss a block into the bucket and cheer himself on with a "GOOD JOB!" or an "AWE MAN...." with each miss. 

  Health wise Cully is wonderful. His growth is ahead of the charts as always. Seizures seem so long ago. We have two more medications to ween off still and we are in high hopes these seizures will not return. 

  Cully has a ways to go academically yet. Julie and I spoke for a moment this morning about this. We see Cully each day and tend to not notice delays in him or small changes. Step back and look at him and you will find he is far behind in his speech using only two or three words at almost any given moment. This is a focus right now with his therapists. I see many of the autistic traits now and then but tend to forget Cully is anything but mainstream. You never know when Cully will surprise you with something fantastic. Out of the blue you may hear him speak a complete sentence or do something that you would think is far beyond his abilities. The trick, or hardship for us is learning what the trigger is so that we can help him find his way to continue performing these things.   I think that is what autism is all about.  ?  

Selfishly I find myself  overwhelmed with all that comes after the initial shock and fear wears off. Cully is doing well and now the focus is on the long road ahead and the damage sustained as we entered all of this. Financially  emotionally, and mentally I am spent.  I realize just how off track we got with all of this and how much it takes to make a come back. I hope I am half as strong as Cully has been or as able as so many of the great friends we have met that have and are going through this.  Many having much more on their plate than we do..   

  In closing of this post..... updates are not as frequent these days as the challenges at hand are those that take much more time to meet. And I hope that those are all we have. I feel very positive about the seizures and I think that Julie and I are going to find all those tricks to help Cully with his autism and his development.

 Now what?