A mile in her wheels

I was trying to figure out what to write about today for Spina Bifida awareness and it hit me... 

What does Clara deal with right now on a daily basis? What have we had some of the biggest hurdles dealing with?

Many people born with Spina bifida are wheelchair (and other assistive devices) users and accessibility is of major importance to them. Currently, Kevin and I are trying to figure out how to best afford/do/make happen the accessibility changes we need to make...remodeling the house, adjustments to the van and changes to our yard. We constantly think about how to find activities that are accessible for Clara. We started petitioning the elementary school 3 years ago to make the playground accessible and we are just now seeing that progress, but it is progress. 

It is always on OUR mind, but I think the majority of the population never even sees or maybe they "can't" see the challenges of access. Not that people don't want to, they just CAN'T. 

They don't understand. 

Disclaimer (before starting in on limitations of wheelchairs): 

WHEELCHAIRS ARE AWESOME, ABSOLUTELY AWESOME!

Most people know that wheelchairs don't do stairs well. Wheelchairs don't get thinner to squeeze through small areas. Standard wheelchairs are typically propelled by the arms of the user sometimes little kid arms or arms with low tone. Wheelchair users, especially the younger ones, who still have their anti-tip rollers struggle with lips on curbs or entrance ways. You can't see or truly understand the barriers to access until you have to use (or help someone use) a wheelchair. A lip on a sidewalk no higher than 2 inches will stop Clara in her tracks, gravel areas where there should be pavement is tough to navigate, doors that open the wrong way and the list goes on. You should try it someday, try to see these small things and understand how these small things can be huge barriers.  

These "little things" are huge to wheelchair users, so there have been regulations passed that require businesses to comply with access issues. The regulations have specific rules, for example: degree of incline of ramps, width of doorways, landings on ramps, curb ramps, parking spaces, etc. 

Still many areas/places don't comply. Here are a few examples...

"Oh, this is perfect! My wheelchair can do some steps, but just not all of them."

"80 degree incline? Challenge accepted!"

"Hey Joe, just paint the ramp blue and put a wheelchair symbol on it. This is the easiest job ever!"

So these examples look pretty much intentionally inaccessible. A "let's make it look like we tried, it doesn't really matter" effort. This is completely unacceptable. 

But...

What I think is even worse is when a business/church/school has made their facility, parking lot, building accessible and some asshat (pardon the language- I actually looked for a synonym that would express this and couldn't find one) decides that the accommodations are not truly needed. 

This was at a local drug store the other day. Did you know if you have a huge exhaust pipe in the bed of your truck you can park wherever you want?

3 handicap accessible parking spots being used by 3 vehicles without placards.
"I just have to run in real quick"

or this image from http://twitpic.com/7id7w
This is not a parking spot. This space is reserved for people to deploy ramps and be able to maneuver between cars with their wheelchairs.

It is never okay. Never okay to assume your needs are greater than those that these spots are reserved for. Even if it is "just real quick". Stop it all you stupid, selfish people!

If you have some time to even watch the beginning of this program, I recommend it. Plus, there are English accents which are always so fun.

https://www.youtube.com/watch?v=WKAAwbxyjq8

I know many people just don't know. They haven't had the opportunity to truly see the struggles with accessibility, but trust me they exist. They impact Clara everyday. 

Join us in the push for accessibility.

I am not asking you to key the cars of idiots who illegally park (although if it happens...) 

What I am asking you is, don't be this person. If one of your friends does this, give them a little 

"Feedback Sandwich"

"Hey Friend! Your car looks really shiny today. You are a real loser for parking it in that handicapped spot. Your tires look good without slits in them."

We shouldn't have to beg for accessibility, but above all we shouldn't have to beg for people to respect the accessibility that is in place.

The Chicken, The Mutt and The Minivan

We have chickens!

 I have been meaning to do a post about our little bird herd for awhile now, but stuff kept getting in the way. We have 6 hens and a little bantam rooster. 

Let me introduce them:

(left to right: O-Joe the Rooster, Poppy, Marigold, Rose, and Lily...missing from photo Posy and Iris)

(left to right: Poppy, Lily, Posy, Iris, Rose)

O-Joe and Marigold

We have had our trials and tribulations, 

for example;

when they were just young whipper-snappers, I caught them vandalizing the house

but none of the previous trials compare to what happened just this week...

     We were at home when a dog wandered into our yard. The dog was cute and sweet. It was some type of beagle mix. I was willing to let the dog hang around until it decided to go home until...

It took off after the chickens. The dog caught and attacked Lily. Meanwhile, Ainsley is crying and screaming, Kevin is running out of the house to help, I am reaching into a strange dogs mouth to pry out a chicken (smart move I know). Lily stands up and runs away as I pry the dogs mouth off of her. Lily runs under our van, the dog gets away and manages to get a hold of her again under the van, where we can't get to them. The kids have disappeared from sight, although I still hear shrieks from Ainsley and words of worry from Lincoln. After what seemed like minutes but must have only been seconds, we finally (really Kevin, but I like to say 'we' because I want some glory) finally get the dog out from under the van. It appears that the dog never made it through Lily's fluff to do any real damage. Kevin looks around and yells for the kids to go and get a collar we can put on the dog, but finds no kids until...high-up, above the entire scene, sitting on top of a Toyota Sienna are the brave 8 and 6 year old. 

      We get the dog on a leash and put it in the back of the truck with 'responsible citizen' plans of taking the dog to animal control. Afterall, the dog is nice (except to chickens) and I am sure at this point she will be adopted by a loving family. Then we start to think, "Where is animal control in our little Dade County?" I call my MIL, who calls the only number there is to call, our county's equivalent of 911. She and I both end up calling only to be told that no one really knows where animal control is located(or they were being evasive and just not telling us). Well, the dispatch lady tells us to "Park by the gazebo and a city cop will be out in a minute." (small town instructions- everyone knows where the gazebo is) Fifteen minutes later the cop shows up. We tell him the dog is not ours (while the dog devotedly lays her head on our arms) and that it attacked our chickens. He in a joking way suggests we keep it and if we feed it it won't attack our chickens. I in a joking way suggest he keep the dog since he doesn't have chickens. I am pretty sure he thought his joke was funnier. In the end he says they only call animal control for aggressive dogs (as this mutt sweetly nuzzles our hands) and this one is clearly not aggressive. 

So what do you do in a small county, full of irresponsible pet owners and low on resources for stray pets? Well, I am not going to tell you what we did (I plead the 5th), but I am sure that dog has a nice, loving family now.

     As an end to the evening Kevin (reflecting back on the 2 young children perched atop the van) gives the kids a great lesson in helping out and being there to save things they care about. As a mom, I was thoroughly impressed by their self-preservation skills (and tell them so), to haul themselves up out of harms way on top of a 6 foot high minivan and am still perplexed by exactly how that feat was accomplished.

"No pink shirt, Spongebob shirt"

(Apologizing in advance for sideways videos)

Clara is two. 

Having a two year old with Spina Bifida, you end up with a lot more obstacles to deal with. 

For instance:

When she doesn't want to do something she tells you, "No!" She doesn't say it in a nice, rational tone, it is usually yelled and involves tears

 

 

Another thing you have to deal with when you have a 2 year old with Spina Bifida is that when you ask them to do/not do something, they will tell you "No!" or just out right ignore you and continue on doing what they want to do

"Clara, don't get all those forks out!"

Spina Bifida and age 2 create a child that doesn't want to cooperate one day

"Clara, stay by Bubba and Sissy and smile"

and the next day is sweet as pie

and it never fails that a 2 year old with Spina Bifida will insist that everything is theirs, often using the term "Mine" forcefully to convey this to anyone who is within hearing range. 

She is wearing Ainsley's shirt insisting that it is "MINE!" because frankly 'Maturity is overrated'

And sometimes, just sometimes a 2 year old with Spina Bifida will absolutely amaze you by doing something you were worried they may never do by themselves.

Two year olds with Spina Bifida = lots of work

Addendum: As I was reviewing this post for grammar and punctuation errors (of which I am sure I still left many) and reread all the challenges that come with being the mother of a 2 year old with Spina Bifida I realized that my 2 year old with Spina Bifida is just a 2 year old...

Spina Bifida does not define her

a little food for thought

Growing Pains

As a little girl I remember my Dad's garden in the back yard. I use to go outside with him and help plant all the different vegetables and later when they were ready I would go out and help pick them or dig them out of the ground. I loved it! I loved plants so much in second grade I bought a rubber tree plant with my honor roll money, that plant is still alive (and huge) at my parents house. I was a regular green thumb in the making.

 A few years ago, when Kevin and I moved to the area of Georgia in which we now live, it was the first time I had an appropriate place to garden. I was so excited and talked my MIL into having a garden with me. We rented a tiller and had Kevin till up an area. We planted a small area, full of all sorts of plants... cucumbers, cantaloupe, tomato, squash, watermelon, and corn. We laid a soaker house throughout the garden, we kept it weeded and fertilized and awaited the fruits of our labor...

As the weeks went by and our plants started to attract bees with their flowers and they started to produce fruit, we were so excited! That is when everything began to go wrong. I noticed a dust underneath my squash plants and the leaves were dying. As I began to investigate further I realized there were little grubs in the base of the plant. Upon researching what these could be, I found out they were Vine Borers (see picture) and they absolutely destroy your squash plants and anything related.

As I watched all my squash and zucchini plants die off after only bearing a few veggies I was so disheartened. Then I realized they were also affecting our cantaloupe and watermelon. This  devastated a huge portion of our garden.

Our tomatoes continued to do okay. Our corn didn't do too well, simply because there were too few stalks to have the pollination needed. All and all my inaugural garden was a failure. I was down but not defeated. I took the "glass half full" view, "Hey, at least I learned something". 

Skip ahead 2 years

Mostly because of time (not gardener embarrassment), this year was the first year I tried my hand at gardening again. I mean, I knew everything now, I was going to avoid vine borers and have a bumper crop. SO EXCITED!

I decided to do some container gardening since we are renting and I didn't want to tear up the yard. I purchased some potting soil and containers and planted sweet potatoes, squash, zucchini, tomato and cucumber. I also had a small plot of potatoes in the ground. I watered and weeded and watched for the dreaded Vine Borer (the only problems squash can have) and fertilized and then...

...it all started to fall apart.

I went to tend to my plants one day and noticed this...

 to the untrained/my eyes this was just yellow dots on the leaves of the cucumber plants. Next thing I noticed the leaves were actually dying. Drat, so as all good gardeners do I Googled the new ailment...Cucumber blight. You see, we had had such a wet, humid few weeks that our plants were developing a fungus. I tried to save them, I bought a spray called Deconil, it did help but in the end my cucumber plants succumbed to the disease. 

The humid condition also contributed to this...

 end rot. This affected my squash and zucchini.

My tomatoes ended up getting this...

 Blight...this is also a fungus and ruined my tomato plants. 

I did manage to plant some squash and zucchini in another area of the yard and at last check they were disease free but they were not producing what I expected...

instead of squash and zucchini, I am getting squashzucchini...

Once again I can say I have learned a lot this year, but I am starting to think that the little girl that was a green thumb in bloom may never realize her gardening dreams, perhaps a fungus killed them...

If I was meant to carry this, I would have been born with a pouch

"If I was meant to carry this, I would have been born with a pouch!" 

Sue Hiland

Those words I swore I would never utter and yet I have broken my own promise and uttered those words many, many times. The problem with having kids and even a husband is that you become the carrier for all things that have become tiresome to carry. Why is it the mom of the family that attracts such pleading as, "Mom can you carry this?", "Moooommmmm, I can't carry it anymore, it weighs 3 ounces and I am tooooo tired!"?

Well ladies, let me tell you why it is the female of the species that develop this ability to pack and carry all things that have any value or potential value...because we have pouches! We call them "Purses" and we love our pouches and we often spend hours searching for the perfect pouch to put all of our necessities in. All the while our precious little ones and spouses are lurking in the shadows waiting to see what pouch we bring home so that they can begin to cram it with their own stuff. Oh, they will act like they are disappointed that you spent money on yet another purse, but don't let them fool you they are so excited, to them it is theirs as much as it is yours.

Don't get me wrong, having a purse crammed full of stuff is how I tend to operate, but I want it to be my stuff and stuff of my choosing. If I am going to tote around 20lbs on my left shoulder and cause permanent nerve damage, I want it to be because I needed to have all my stuff with me, not everyone elses.

Kevin always asks me for things he needs and assumes I would carry in my purse..."Hey Heather, will you get some chapstick out of your purse for me?" I scrounge through my purse and come out with a Burts Bee's Hibiscus tinted lip balm, which he refuses to use (go figure) and then proceeds to criticize the fact that I am not carrying his items in my pouch..."Who wouldn't have chapstick in their purse?...why do you even carry a purse if you don't have chapstick?" blah, blah, blah...He loves the idea of a purse, as long as he has someone else to carry it. Should I need him to hold my purse while I go to the restroom when we are out, he will hold the straps between his thumb and forefinger like he is holding something foul. But should he have the need to clip his nails or desire a piece of gum he will dig right through it and find what he needs (assuming we aren't in public).

Again,don't get me wrong, even though I am ranting and raving about having to carry a lot of stuff in my purse, when it comes to my purse I like to be more prepared than a Boyscout about to hike Mount Everest (do the scouts go to Nepal?). I have been known to carry enough ink pens to supply a community college art class and enough silverware to restock the Olive Garden for the evening. I have saved people from hypoglycemic episodes by quickly pulling snacks packed with simple sugars from my purse...but despite this abundance of useful wares in my purse, I am still ridiculed by the lack of something someone else might need and then made fun of when someone discovers something odd in my purse, such as a single toddler sock or 4 bottles of hand sanitizer.

I don't buy lots of purses and tend to not spend a lot of money when I do get one. Recently, I have been on the hunt for a new purse and finally found the purse of my dreams today, which I will carry for the next 17 years (wink, wink). As a bonus it was on clearance!!!! As I reflect on my previous battles to protect my purses' free space and prepare for the use of my new purse I am officially laying down some ground rules.

1. My purse will be used to carry items of my choosing, should you desire for me to carry an item of yours you will be charged rent

2. Should you make fun of anything I have in my purse your rent will be doubled for all items of yours that are residing in my purse

3. (for the children) Should you ask me to carry an item of yours and another item of yours already exists within the confines of my purse, the older of the 2 items will then be handed back to you to carry or thrown away.

Ladies, join me in a stance against the unrealistic and ignorant expectations that we carry everyone else's stuff and enforce your own "Pouch Rules"..."Protect your pouches!" Say it with me now!

Her she is...so purty

 It might not be your favorite purse, but it was exactly what I was looking for

her best side

First Day of School

So the kiddos have started back to school.

Clara is in her second year at Early Headstart. It is such a great place for her. Her therapist is able to come to the daycare and do her therapy once a week. I think it helps her so much to be around kids her age and encourages her to strive to pull up and stand and move around. She has also recently qualified for Speech therapy since she is a little delayed in her expressive speech. Despite her expressive speech delay she is above average in receptive language and the emotions that go along with being told certain things she may not want to hear, like "No!". She is also closing in on the terrible 2's and had a complete meltdown during therapy this week. Hopefully therapy will go better now that she is back in school and in a routine. 

she is telling lies! How could someone as cute as me throw fits?

Lincoln and Ainsley have also started back to school. Lincoln is in 2nd grade (tears) with lots of friends from previous years in his class. On his first day home from school he said "She is the nicest teacher in the whole school". Lincoln had a super nice teacher last year who set the bar really high so his new teacher must have wings and a halo!

Ainsley is in Kindergarten and teaching the class herself...Okay, so she is not teaching but I am sure if she was given the opportunity for an audience she will take it. She is also very excited about her class.

At open house the other night we were asked to fill out sheets on our children. The first question was, "What is your child interested in?" Kevin quickly answered Lincoln's with "Lego's, drawing, basketball". I was left to answer Ainsley's and it was really tough. Ainsley is very active and into everything but doesn't really have a "favorite". I thought on it and finally found myself writing "socializing". I could think of nothing more accurate. I turned to Ainsley and asked her what she liked about school and she quickly responded, "Lunch time". So in a way, our answers were the same because I am sure her lunches are spent mostly "socializing".

getting so big!

We have had a great summer but I am glad to have the kids back in school. Lincoln and Ainsley had gotten to the point that they were going to bed fighting and waking up fighting. They need some time to appreciate what good siblings they have. 

My babies are growing up, I don't know how it happens so quick

Plans are for wimps!

We traveled to see Kevin's brother and his family for a long weekend that I had off from work. They live in a rural area of East Tennessee not too far from Gatlinburg. We had discussed what kind of activities we would do on our way back from his brother's house. We had thrown around the idea of going to Dollywood (a themepark) and decided that maybe the Knoxville zoo would be fun and something we hadn't done before. So we headed West toward Knoxville. 

Not too far outside of Knoxville, I started watching the exit signs for a place for lunch so we wouldn't have to spend money on food at the zoo. Then a sign caught my eye, it read, "Zoo and Camel rides 3.2 miles". I knew this was not The Zoo, but it did raise some curiosity. We passed this exit because there was nowhere to eat, but the thought of that sign kept coming back to me. I told Kevin I had seen the sign and because the sign didn't say the actual name of the place (unless its name was "zoo and camel rides") I was left to "Bing" the question "Exit 402, zoo and camel rides". I got a hit.

Apparently, the true name of this destination was "Circle G Ranch" and they had a good website (which is always a good sign, right?) and described their operation/facilities (you can see the website here http://ridecamels.com ) as feeding animals from the comfort of your car, riding camels, and petting zoo. I told Kevin of these various activities and I think his exact words were 

"Let's do it!"

I was still skeptical since I had never heard of the place, much less any reviews good or bad. We were committed now though, so we drove on back to Exit 402 forgetting our initial plan of the "real" zoo. 

As we exited and began our 3.2 mile trek to Zoo and Camel Rides our first ominous sign was seen 

Yes, those are bungee cords holding, (mostly holding) the sign to 2 rusty posts. Despite the appearance of the literal (and figurative) sign, we did indeed turn right as directed. We were committed...

We continued on a narrow, windy road wondering what we were getting ourselves into. 

When we arrived at the Circle G Ranch you could see the wild animals roaming in a small cleared off pasture with a gravel drive that encircled it. This gravel drive was maybe the size of 2 running tracks. 

Things were not looking good for the Stanfield's fly by the seat of your pants decision. I even believe that at this point I turned to Kevin and said, "Do you want to go to the 'real' Zoo". He said, "no, this will be fine, we have already made the decision". 

We pulled up to the check-in and waited to be helped in our adventure into the Circle G Ranch. Sitting waiting for the employee to come check us in I noticed and snapped a picture of a couple of things. 

 

Warning signs, lots of warning signs and...

a sign made out of deceased animals' bones. I couldn't help but wonder where all those bones came from, maybe a Halloween clearance buy, maybe.

Then our very gracious greeter came to check us in and even allowed me to snap his picture.

He gave us some very important rules, like don't feed the camel with the purple halter, the pigs, or the donkey with your hands...oh, and if you are feeding any of the "Big" birds do it like this (I didn't get a picture of the demonstration to share with you all, so should you find yourself at the Circle G Ranch please pay attention, as this summary is not comprehensive). This nice gentleman also made us aware that the actual gravel trail went way back into the woods beyond the ranch and that it could take around an hour or more to complete, at this point I started patting myself on the back for a good decision. Now we weren't worried about getting our money's worth, but whether we had enough gas...

And so the Safari began...

It started out very cute

 and then we realized that some of these wild animals were...wild

 Yes, that is a Zebra...in East TN

They even had this Quartet that was serenading Kevin

 (Kevin's face is so funny in this picture)

We continued on through the park and saw some awesome animals. 

 occassionally cleaning snot from the lense of the camera 

 Porcupine!

 It is well known that Chevy hoods are natural habitats

 

 look at these 2 wild animals!

3 day old camel, too cute!

 The kids had a blast, they got to feed the animals...

Lincoln, tries hard to hide his excitement...

 but he really did have a blast!

Clara, liked it too, but apparently her olfactory senses are very sensitive

So what started with a trip to the zoo, became an awesome, fun trip to "the zoo and camel rides" at Circle G Ranch. I recommend it to anyone in or traveling through the Knoxville area. It was a lot of fun and the employees are very gracious and accommodating. 

Thanks for a fun, unplanned day Circle G Ranch