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..