Our flag

Friends, we now have our flag for this mission. It was designed by the very talented Holly Cruise. Holly and her sister have a company that makes incredibly cool clothing for kids. Completely Eco friendly. Check it out at ilovemimosa.com . Next time you will see this flag it will be on top of Africa.

Optimism and autism

Folks, to whoever reads this blog, autism makes many loathe benchmarks. (I.e) your toddler should be doing....may be doing....can possibly be doing....on a rainy Mondays of an odd numbered month of a leap year your toddler could possibly.... As the months progress, and still many benchmarks go unchecked, excuses start being made. She once said something and made sustained eye contact. Then you are told stories by worried relatives of hey everything is ok my child didn't say anything for a long time and now....whew wont shut up. But you begin to realize that something is not quite right. Denial and excuse making turns into reluctant acceptance of despair.
My daughter is very smart. Sophie is a gem. These last couple of weeks, we have sat and listened to her speech. She is really exploding in terms of her conversational skills. Whether it is asking for what she wants, reading words, saying "I love you.", singing, or having conversations with her Barbie dolls, she is really using her language. Now we are able to satisfy her needs and really get to know her sense of humor more and more. Perhaps my favorite thing she says outside of the obvious is the devilish twinkle and half grin she gets when she asks for "chocolate sauce". Sounds pretty typical no. Taking a look back 4 months back, 12 months, Im thrilled with how far she has come with eye contact and speech. That makes me even more optimistic for the future. And optimism for a parent with special needs is like gold, a precious commodity.
She may not be "typically developing", but she is awesome. Her accomplishments make me the proudest papa out there. So I've been thinking back to the benchmarks we missed and the emotional wear and tear that we endured. I realize that Sophie may not be developing at the rate the book says, but she IS getting there. Maybe she will develop more slowly in some areas and quicker in others. With the proper therapies and some dedication, you all will see what an amazingly bright and wonderful child that we are blessed with seeing daily.

Tears and triumphs

You know you're in for it when you get the "silent cry". Parents, you all know what I'm talking about- those few moments post-incident when your kid's eyes fill with tears and his or her mouth opens wide enough to possibly swallow the family pet. The longer the silence, the greater the eruption to come. Then the comes the deafening cry as your kid lets it all out. Ugh.

Now ordinarily these occurrences can be resolved fairly easily. But when your kid cannot entirely convey to you what hurts or happened, it can be heartbreaking and incredibly frustrating. So as Sophia sobbed on the couch, I knelt in front of her asking her countless questions: "What happened? What hurts? Is it your tummy? Did you bite your tongue? Does your ear/eye/mouth/elbow/left knee/big toe hurt? What? What is it? Please tell me..." As if pleading with her would get her to tell me. The only word she managed to utter amidst the sobs was, "hurts". So I ran through the body parts again. And she just cried and said, "hurts".

This went on for nearly ten minutes. Really makes you feel helpless as a parent when you can't take away your screaming daughter's pain. All you can do is continue your game of charades and hope whatever it is resolves itself quickly. Those ten minutes can feel like an eternity though.

Sophie has made tremendous progress though. She has been using a lot of the phrases she has repeated echolalically, now independently and appropriately. And with attitude too. The other night I was trying to get her to tell her sister Emerson good night; after the second request, Sophie looked at me with one raised eyebrow and said, "I know". Even her "no" replies are getting stretched to two syllables as she injects some attitude. It's hard not to laugh sometimes.

We've also seen some great imaginative play as well. Santa brought our girls the Barbie Dream Townhouse, complete with sound effects and elevator. Sophia confiscated Emerson's Barbie and added it to her arsenal of Barbie dolls to play with. I absolutely love listening to her narrative of what's going on at the Townhouse. For example, Barbie 1 enters through the door and says,"Hello, it's nice to see you" to Barbies 2 through 4. I try to be as quiet as possible to avoid disrupting her play. I love every second of it. It's moments like these that make you forget about the frustrating or upsetting times. Just listening to her sweet little voice talking amongst her toys or singing her own improvised versions of songs is simply wonderful.

I wanna tell you about Santa

Autism never takes a break. There is no respite in this battle. The littlest thing can be a massive ordeal and often requires tons of patience and understanding. Nic and I try but fail too often. To those folks who think I am a really great parent, I assure you I do not feel that way. I feel like I could do a better job understanding this disability and giving Sophie the patience she deserves. I feel too often that I am just trying to swim upstream or going in circles. If any parents raising a kid with autism have it all figured out, take a bow. As for the rest of us, we require intense education, deep breaths, and the daily miracles of our children's triumphs to survive. But the thing to remember here is that our kids didn't ask to be born this way. Underneath it all, they are just kids looking for love and understanding, wanting to laugh and play. We must understand that essential fact and behave accordingly.
Struggling to communicate is not just our problem, or even a problem limited to children on the spectrum for that matter. I just want the key to get into her brain and find out what she thinks. Sophia speaks in sentences, and more often than not she will use phrases in their proper context. I know what things she likes- trains, Sesame Street, Minnie Mouse, and bouncing. She likes running and pizza, and even recently figured out pedaling on her bike. But I want more. I want her to understand us.
I am not trying to torture my child while engaged in an epic battle over potty training and forcing her to sit on the potty. I'm sorry that I screamed at her, when, for the third time, spit juice all over the floor, creating a sea of apple juice (which also meant she, of course, felt inclined to disrobe and slide around it).
I tried to tell her about Christmas tonight, but she blocked me and didn't seem interested. She has been very excited about Christmas lights and pictures of Santa Claus, but I want her to get even more excited. I told her anyway, but I don't know if it got through. Call me selfish, but I would do anything in my power to give her the joy of this story , going to sleep on xmas eve with unbearable excitment. There is so much I want to say to her and probably her to me. But tonight, I tried to tell her about Christmas and it made me cry.
I have my faults, to be sure, but I am not somebody who quits on anything--with almost-ironclad resolve. It gets me into trouble, but I won't give up in either of my kids. Sophie is such a smart and adventurous kid that she will succeed. But day after day, I will continue to fight to understand her and she me.
You know, I asked her to throw away an empty juice box in the trash can and she walked past the trash can down the steps towards our room. "Great," I thought, "what was I thinking-she is probably squeezing out he last drops all over our bed or something." I heard a bang from the other room and rushed to find her digging out a trash can that I had forgotten about that we don't use! You see folks, maybe the Christmas story will take a while, but here is proof that she IS getting it. Til then, we have lots of hope, and lot of lights on the Christmas tree.

Workout, dads night out

"Here is this 100 pound bag, you are going to wear it for the duration of our workout. Now for the stairclimber." My trainer Ashley and I have nicknamed that damn bag "Bernie." I have been doing burpees, sprints with a rope tied around me, and more lifting than I ever wanted to do. Evidently this is for "my core". I relish the challenge, but not being able to lift my arms or walk is a common deal. I persist...because I must. Because that mountain is coming quick. Africa beckons.

Another thing that has come up recently is dads' night out--the flip side of my wife's whine night, which is a group of women with children with autism or other special needs). I, of course, believed that this was a sole outlet to complain about us guys. It's a night my wife looks forward to all month long. The women began to try to get us dads together, figuring it would be a good opportunity for us. At first I was resistant to this idea. First of all, why do I need to be set up? I have friends... But nevertheless I gave it a go. I hate to say it, (she won't see this, right?), but my wife was right.
Now if you have kids with special needs, you need a support group. Without one, you often feel that you are so alone. It feels great to gather and share similar experiences. It is both educational and emotional. Of course, we don't sit around and cry...yet (looking at you, Drew, so keep it together). But listening to each father talk about his experiences with this autism thing is at once comforting and depressing; we casually sit around discussing what the hell has contributed to the numbers skyrocketing of autism diagnoses or painting a bleak picture of the future. Last night we talked about the potential for our kids to be with us our whole lives, the burden our other kids may have to bear, the cost of a school that would ensure no bullying, or even whether some of our kids would develop normal speech. You may not feel entirely alone in this struggle, but you do feel almost helpless as you stare into the abyss of the future, or think about the fact that autism does not get the attention that it deserves. My theory is the more attention given to the topic, the more likely our search for the origins and ways to combat autism will be successful. In this, we also have HOPE.

Autism is a developmental disability affecting 1 in 88 children. It impairs social development and communication. There is a wide spectrum of course, ranging from those low-functioning individuals with almost no communication to those with Aspergers (think Bill Gates and Albert Einstein). Most have sensory issues- my kid can't stop bouncing or stimming
(hand flapping, verbal sounds or vocalizations, or rocking are examples of stimming).

Sophie is a beautiful child inside and out. I will fight for her my whole life. My wife and I aren't the only combatants-now we are gathering of army of moms and dads. We will make our presence known and will demand that our schools and communities begin to be better prepared for dealing with this epidemic.

By the way, this Sunday, Oct. 21, at 8 pm (EST), Comedy Central will be airing "A Night of Too Many Stars", which is an annual stand-up special aimed at raising awareness for autism. Set your DVR's, folks!

Team Sophie

Richmond Walk Now for Autism Speaks

From Malaysia to Tanzania

My brother Colin has signed on to do this hike with me. I'm incredibly pumped. Colin is a tremendous role model in my life, seasoned, hair a little grayer yet he still maintains his cool. (ive been told the kids these days they call it swagger) Colin always knows the trends before their big. (facebook, google etc) He spends his time going to surf camps in costa rica with his kids who are also wicked lacrosse and volleyball players and traveling the world. I admire him and to go to africa and climb this mountain together is a dream cone true. Here we are in 1992 on the top if mt Kinabalu on Borneo, Malaysia. I'm upper left with the hood all of 13 years old. Colin is in the yellow . Here we are now below. Welcome aboard.