Monday, November 26, 2012

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.

Friday, October 19, 2012

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!

Tuesday, October 9, 2012

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.

Sunday, September 30, 2012

Pics from the fair

Virginia State (UN)Fair

Sophie loves rides-the faster or bumpier, the better. Just ask her poor dad who typically has the privilege of riding along with her on anything that spins. She just loves that vestibular stimulation, like many kids with autism do. We decided to head over to the State Fair today to give Sophie some of that nausea-inducing fun. We even invited a playmate (and former classmate) of hers to come along, parents in tow of course.

As expected, Sophie was having a fantastic time. She looked just like any other kid riding on the ponies and ferris wheel, grinning and laughing the entire time. I took lots of pictures and a few videos with my phone and was thrilled to get a video of her on the carousel wearing a cowboy hat yelling, "Yee Haw!" Too funny.

Some of the rides were for children only, meaning that they needed to be able to ride by themselves. Sophie usually has no problem doing this, so we didn't think twice about putting her and her pal on a little boat ride that went around in a circle on water. Things were going great until the water proved to be too temping for her. Like many individuals on the spectrum, Sophie LOVES water, so naturally she tried to lean over to dip her fingers in the water. I yelled to her several times to keep her hands in her boat. At first she listened, but then it was just too tempting. As the ride was stopping, she was trying to dip her whole hand in the water. The ride operator came over to her, probably unaware of her disability, tried to tell her to keep her hand out of the water. When Sophie didn't respond, the lady actually grabbed our little girl by a lock of her hair and pulled her up to an upright position.

I don't need to tell you how disturbing that was to see. I immediately yelled to the woman, who appeared to be in her 60's and missing more teeth than she possessed, not to touch my child in such a way. Sophie's companion's father was standing beside me at the time and began yelling to her as well. Many other parents watched in disbelief. I stood there, almost shell-shocked, thinking to myself that clearly I must have just imagined the whole scenario. One mother came over to me and said I needed to head over to Guest Relations. Another physically placed her own son on the ride herself in order to avoid the operator needing to help him climb into his boat. At that point I snapped the operator's pic with my phone and went to complain.

The gentleman at the Guest Services booth escorted me back to the ride area to question the woman. Her response, and I kid you not, was, "I'm sorry, I'm sorry, I was just playing". Say whaaaaat? So I went off, telling her she most certainly was not "playing", and that she of course had no right or reason to touch any child that way, let alone a child with autism. I explained to her that Sophie may not always respond to people. She again emphasized that she was sorry along with a whole bunch of crap about only trying to "gently touch some of the hair behind her ear". Not quite, honey. We clearly saw her pull Sophie's hair. Sophie was fine, but that wasn't the point.

She was sent back to operating the boat ride and was reassured by the gentleman from Guest Relations that her behavior was unacceptable and that "before the day's end, she will be fined $25".

Come again?

My 4 1/2 year old daughter, my baby, was just (for lack of a better term) assaulted by an old, toothless carny. And she got to go back to work. Meanwhile our day was completely ruined. I wish I had enough sense at the time to have taken a video of the conversation we had, because this is rather serious. She should've been fired on the spot, and as many of my Jersey Facebook friends suggested, had the shit pulled out of her hair to see how it felt.

Trust me, this is not over. This CANNOT happen again- to any child. It's despicable, and I'll be sure to keep you all posted.


Monday, September 24, 2012

8 ways Sophie's amazed me this week

The tears stream down your face when you start thinking about the future for your child. the challenges she might face in school, her opportunities, and her future.  I remember shedding tears when talking about Sophie's future endeavors. But in those moments, you do your daughter a big disservice.  You don't know what the future holds and you assume the worst is coming.   So I feel compelled to look at some of her many accomplishments and I would like to share several from just from the past week.

1. How she took to the butterflies. She was wonderful at the botanical garden. Had a smile ear to ear and was very well behaved.  She resisted the temptation to prune the flora.  Non stop stimming.  (stimulatory behavior)

2. Sharing, after the zoo on Saturday, I gave her some cheese balls. After I decided (trainer be damned) that I wanted some cheese balls.  I looked at her and stuck my hand out.  I asked if I can have one. She looked at me and gave me one. This is huge.  Although this type of behavior has not generalized into sisterly sharing.  Ask Emmie....

3. How she took to soccer.   Nicole and I are soccer parents now although with  a stylish Buick Enclave instead of a Minivan.  . And she did absolutely wonderful. She complied with directions and she took to it with ease.  Moreover, she enjoyed the heck out of it.

4. Her reading of "daddy calls me doodlebug" was epic.

5. Her vocabulary is limitless, she can roll through flashcards like no other.

6. I called her the "nanner" monster (bananas) like the Cookie Monster, making the sounds of nom nom nom. She found this extremely funny and gets at her sense of humor.

7.  Her reports from school are really positive. Great during transitions.

8. Eye contact has been improving little by little. This is a major issue for children on the spectrum and she is getting much more comfortable.

Next week, next month, and next year there will be more and more of these triumph. If that is the way you look at it, you will suddenly be able to measure how far she can go by how far she has come. And then you can smile and just love your child though you know the path may be arduous, it can and will be traveled.

Saturday, September 15, 2012

I wish I knew

Any parent would agree that it's tough when your child is sick. You never like seeing your little one in pain or discomfort. When Sophie gets sick, it's often a guessing game of what's wrong. She's not yet able to tell us what hurts, so when she started to run a fever Monday night, it wasn't long before I started to feel guilty- guilty for not being able to figure out whether she had a sore throat, a tummy ache, an earache, etc. It kills me that I sometimes can't figure out what to do for her to make her better. Thankfully this time around, whatever bug she had only seemed to set her back about a day and a half. After that, it was fitting that her 16 month old sister, Emerson, picked it up. And just how it was with Sophie, we played the same guessing game with her baby sister.

Back at school on Wed., Sophie's teacher (Mrs. F) and 1:1 assistant (Miss H) were telling me how great her eye contact and patience is becoming. She's more focused and verbal- even getting a little bit of attitude. When Miss H was calling her name (repeatedly) on the playground, Sophia looked over her shoulder to her and yelled, "WHAT!?!". Another time, Miss H told her she had to wait until after breakfast before they could paint; Sophie boldly told her, "I can't wait!" I try hard not to laugh when I hear these stories. I'll take the back-talk if it's being used in the right context. Hell, I'll take any talking in the right context!

For whatever reason, Thursday was more challenging. She was incredibly grumpy and whiny, both at school and at home. And once again it turned into a guessing game of what was bothering her. Was she still feeling sick? Was she annoyed by something she was wearing? Was her iPad too slow in loading her favorite video for the 116th time? Was her juice not the right flavor today? Was she pissed off at Elmo for whatever reason? I wish I knew. Her whining only seemed to put her sister in a similar whiny mood, and whatever I tried to offer her at that point was greeted by a shriek of disapproval and a shoving away of whatever it was. I couldn't make her happy, no matter how hard I tried. Yeah, that's depressing.

But you know, as frustrating and tear-jerking as those challenging times are, those joyous and fleeting moments of clarity and brilliance make me forget a lot of the heartache. Today was my birthday. We decided to take the girls to a botanical garden, hoping Sophie could romp around and get some fresh air amongst the scenery. We found ourselves in a live butterfly exhibit- the kind where hundreds of butterflies flutter around freely in a greenhouse full of exotic plants and flowers. I can't remember the last time I saw Sophie that excited. Smiles, giggles, happy stimming, trying to get as close to some of the little guys as she could. The place was rather busy, but I realized that not once while we were in there did I care to see if anyone was staring at her or wondering why she may have been a little too loud or a little too excited. She was truly in her own little paradise, and that's all that mattered. It was beautiful to watch. Wouldn't it be great if we all could find something to be so utterly excited about?

Sophie gave me the greatest birthday present as well. This evening she tried to tuck me in with Elmo, Zoe, and a brown teddy bear. She told each of us, "I love you, good night," followed by a kiss (which is what I say to her at bedtime every night). I was last in line, and when she got to me, she giggled and tried to kiss my nose after saying those precious words. I grabbed her and squeezed her tight, enjoying the fact that she wasn't resisting my hug. It was just perfect. It reassured me in a big way- almost as if to say that even if I may not always understand what's going on in her mind or world, it's ok because she knows that I will love her unconditionally. And she loves me just the same.

Thank you, Sophie.

Tuesday, September 11, 2012

She has the most beautiful voice.

Today was tough.  In addition to being an anniversary of a national tragedy, Sophie stayed home sick.  One of the toughest things about raising a child with autism, is the difficulty found in communication.  Sophie has some speech.  She reads, she asks for things, she sings, she engages in echolalia (this is where she repeats lines of dialogue from tv or conversation) but she can't tell us what ails her.  She had a fever today but we can't figure it out what hurts.  Imagine this....we have to learn how to make educated guesses.  But we keep trying.  Anyone with a child on the spectrum knows that there are extremely euphoric highs to tearful devasting lows.  

When you are a parent of a "typically developing" child,  it is normal to think and worry about what the future holds.  When you have a child with special needs, those fears can be downright petrifying and crushing.  I find you need to learn how to live moment to moment, day to day, and triumph to triumph.  You can get lost in a sea of despair with "what if she doesn't ever......" or "other kids can be so cruel" or get lost in the stares of other parents wondering why your kid is acting up.

But guess what? She has come so far.  Eye contact, her speech, and her spirit has increased dramatically over the past year or so.  People have said my endeavor inspires them ; however what I am doing is nothing compared to the mountain my daughter has to climb daily. She is the real inspirational figure here.  I'm doing a physical and mental challenge that will last 7 days.  She is fighting every single day.   She doesn't get a day off to be sore and regroup.   She didn't elect this life.  Her character and perservance is downright amazing. She is a fighter!

Finally, I must say that I know that there are kids out there who suffer from unimaginable hardships with life threatening conditions.  There can be nothing worse.  And I don't pretend to understand this because Sophie is a healthy child.  I am very grateful for this.

Quick story...we went to the Metro Richmond Zoo.  Sophie was doing really well and having a blast.  We passed a monkey cage and I said "look at the monkey" .  Sophie informed me  "orangutan"!  That will teach me to underestimate this child.  


Saturday, September 8, 2012

Fundraising info

There is a link on the top left of the non-mobile version but if you cannot see it on a mobile version.  Clikt the following link.  Anything is appreciated.  Thank you and welcome to my journey.

My fundraising page with Autism Speaks


Friday, September 7, 2012

Should I have a cane.....

So am I definitely mother whose generosity knows no limits, purchased me my ticket today. That wasn't the plan, she had tons of miles, and she tried to use them 140,000 of them. But guess what....not offered. Or wait maybe one way and pay 1900 dollars for the way back. She said isn't it only 1400 from here to Kilimanjaro. She eventually just bought the ticket. She is wonderful and I am very grateful to my family.

So I took the money for the ticket and hired a trainer who has me doing strength training with weights and abs. Course I go to the gym in Chester and run into customers. (I always wish I had more weights when people see me, I always have an empty bar learning technique). Yes I am the guy who has to be first at all times. You hop on the treadmill at 7.5 guess what Im running at 7.6. Anyway Ashley, my trainer, has made it nearly impossible to walk. I've got muscles sore I never knew before existed.

I'll never forget what I guy said to me while I was limping around last week. One half of his teeth missing, he gave me a smile and asked "pimp or limp?"
Cause I can't resist I said "both" smirking. I bet be didnt know shortly i will be jamming out to the soulful ballads of the Shushybyes. ( know this!!)

My life is hectic but still I am driven for success in this endeavor for sophie, for the cause and yes me too. Onward and upward. I think as I hobble around tripping on coloring books and multicolored elmos Ill be humming....

"I don't care whatcha think about me, cause you can't get a dollar out of me. ....Cause I'm a p I m p". 50 cent

Smooth it out now.......Campbell

Saturday, September 1, 2012

Deep thoughts-

Big question is it harder to hike the 20,000 mountain in 7 days or go without my smartphone and iPad. I shutter to think about the implications of how many words with friends games will be missed....

Also my tour company promises clean does that work? There are random toilet port a potties on the way to the summit or are they broken down and carried? That guy should be tipped extra..

Friday, August 31, 2012

My Intro

Hi everyone,

I'm Nicole, Campbell's wife, and mommy to our darling Sophia and equally adorable Emerson Grace. Just wanted to introduce myself since I will be helping Campbell with his entries while he is up on the mountain. And for the record, yes, I am insanely jealous that my husband is going to climb Kilimanjaro.

We're doing this not only to raise money for Autism Speaks, but we also want to bring attention to what autism actually is and what it's like to raise a child that is on the spectrum. It's a tremendous emotional roller coaster ride, and some days are much easier than others. Whether you're reading this out of curiousity, out of a need to network with other special needs parents, or you just want to live vicariously through Campbell's writings and photos, we hope we can offer you some insight into our lives and what should be considered an epidemic.

Please feel free to comment and ask questions- I'll be frank and honest in my replies.

Monday, August 27, 2012

Why Kilimanjaro?

"She's on the spectrum..(sobs)" my wife told me. The confirmation of the problems at Romp n Roll, the lack of eye contact, the nonverbal stimming, and lack of verbal communication has a name...autism. I began crying tears not shed since my fathers passing. All the thoughts came streaming across-“why?” “What had we done wrong?” “This can't be true.” “Second opinion time.” I'd like to say I handled the news with steely resolve, but it was more of despair. I then downloaded an app to find out what autism is. When this impacts 1 out of 88 kids, shouldn’t I, a rather well-read college grad, be aware of such a neurological disorder. When I tell somebody my daughter has autism, they immediately exhibit sympathy, followed by a sort of vague comprehension. Sometimes, a bold individual will ask, "what is autism ?". I have to do my part to raise awareness.
Sophia, my Sophie, the holder of the keys to my heart, has had me wrapped around her finger-and she knows it. She is highly intelligent and I'm so proud of her. She is affectionate and funny. In short, our relationship is pretty similar to a lot of daddies and their daughters. However, unlike many, we communicate via PECS and more recently, statements like "I want ----". We take her everywhere. From sitting through The Wiggles Live to spinning around and around on rides. If it makes her happy, we will do it. We think we're damn good parents. We have literally fought to develop the speech we have and still need. We worry about her safety, her future, her wants. More than anything, I want to know about her day. Some guys gripe that their kids never shut up...I would give my right arm to hear about her wants and dreams. This is a dream that will come true.
You know we argue a lot in this country, and we can be down right mean to one other because of differing religion, sexual orientation, creed, political affiliation, and ideals. We also have the capacity for great goodness and grace. Check out how a community searches for a boy with autism in Hanover County, VA, or the surfer dudes with tats and dreads working with Sophie in Nags Head for "Surfing For Autism". Often we see communities come together for one another. I am touched by these selfless acts.
I am going to do something special to raise money and awareness. I'm a going to test my limits by climbing Mt Kilimanjaro in Africa and coordinate with Autism Speaks. I'm going to blog about it. I will do my small part to help educate as many folks about an epidemic that affects 1 in 88 kids. Despair has given birth to a better man with steely resolve. I will fight, and I will work harder, be more patient, expose my beautiful daughter to more and more, and unlock her abilities. And one day, I’ll come home and she will tell me about her day.
Please join me in this fight-educate and donate. Join me as I go…

Climb Kilimanjaro for Sophie