My new "job" (Researching and Reading About Autism)

I've read many articles and a few books on Autism over the last year, but I found Jenny McCarthy's "Louder Than Words" book very helpful. Evan, Jenny's son, has many differences in his journey with ASD, but definitely many symptoms that EK displays too. It was great to get a list of things that Jenny tried in her journey and battle with Evan's diagnosis.

As a mother of an autistic child, I feel so alone. Supposedly- so many people have children with autism yet no one that I know very well. I get so overwhelmed by everyone's opinions on treatment, possible deficiencies, and needed therapies. I feel like I need a second job to support the financial burden of "treating" EK, along with needing extra hours in my day to research the next step in finding the suitable treatment option for her.

We have recently put EK on a daily fish oil supplement. I have seen improvement in her spontaneous speech. Not sure if the fish oil is really helping or I'm just desperately looking for a glimpse of improvement. She has also started ABA therapy 3-4 hours per week. I'm praying this will be helpful, especially with the amount of money it is going to cost per week.

Please continue to lift her in prayer. I still believe it's the ultimate "healer" in any situation.

LC

Adventures in Potty Training

(this is Paul writing, by the way)

My first full week off this summer has been filled with trying to get EK to go potty in socially acceptable places. This is my mission this summer.

I've kept a record of every time anything happened relating to peeing or pooping while trying to potty train her. Here is what's happened:

Monday - June 3: We started with padded, potty training panties.

8:15: Woke up wet. She did not go in the potty. Put on her thick panties.

8:25: She peed on the kitchen floor. The funny thing is she'll exclaim, "I made a mess!" So she's aware of the problem. I took her to the potty after the accident and she did not go in the potty. We put on a new pair of thick panties.

8:45: She stayed dry and did pee in the potty! Success #1.

9:03: Another accident - this time on the den floor. She did not go in the potty. I was out of thick panties, so I put on regular panties. I also put on a pull-up over the panties to contain the messes, but with the panties underneath she could still feel the wetness when she went.

9:20: Peed in her pants. Did not pee in potty.

9:40: Peed in her pants. Did not pee in potty.

10:20: Stayed dry, but did not pee in the potty.

At this point I decided that if she's wearing ANYTHING below the waist she thinks it's a diaper and she'll just go whenever and wherever she wants, not realizing 'til it's too late that she's making a mess. I decided to just go completely bottomless so I'm not going through 15 pairs of panties a day. This means if you decide to pull a surprise visit to our house during potty training you'll likely see a bare-assed 3 year old running around!

10:30: Stayed dry. Did not go in potty.

10:45: Stayed dry. Peed in potty!

11:10 - Stayed dry. Did not pee in potty.

11:25 - Stayed dry. Did not pee in potty.

12:00 - Stayed dry. Did not pee in potty.

I'm starting to be encouraged at this point! She is showing the ability to hold her pee for longer periods of time while completely bottomless!

12:15 - Stayed dry. Peed in potty!!

12:40 - Peed on kitchen floor while eating lunch. "I made a mess!" she proclaimed. She did not go in the potty after this.

12:50 - Peed in the potty!!

1:10 - Stayed dry. Did not pee in potty.

1:47 - Stayed dry. Did not pee in potty.

2:00 - Peed in potty!

2:45 - Peed in potty!

3:15 - Peed just a small amount in the playroom. We hurried to the potty where she finished the job. Even though she peed some in the playroom, I was excited that she stopped it and waited 'til she was on the potty to finish peeing.

3:30 - Pooped in the playroom. That was fun.

3:50 - Peed in potty!

4:15 - Peed on den floor. Did not pee in the potty. 

4:30 - Peed in potty!

4:40 - Peed in potty!

5:15 - Stayed dry. Did not pee in potty.

5:25 - Stayed dry. Did not pee in potty.

5:45 - Stayed dry. Did not pee in potty.

Once I decided to go bottomless we had much more success. This will be my approach for the rest of the week. 

Tuesday, June 4:

We did a lot of running around today, but we did try training some in the morning. She stayed dry for the first 90 minutes with no trouble, peeing in the potty once. Then I was sitting at the computer paying bills at 9:00 when EK comes running in from the playroom. "Daddy! I made a mess!" Then she very proudly hands me a giant turd. So, here I am with a pile of poop in my left hand trying to figure out what to do. I grab her with my right hand and we run to the bathroom to wash up, vigorously washing every bit of exposed flesh! After this we get dress to do some running around. We did not do anymore training this day.

Wednesday, June 5:

We woke up at 7:30. Between 7:30 and 10:30 she stayed the entire time, and peed in the potty three times. At 10:30 we got dressed to go to the YMCA. We followed that up with a nap (in a diaper), then gymnastics, then dinner. At 6:30 we resumed potty training and she stayed dry, peeing twice again in the potty before bed time.

Thursday, June 6: 

We woke up at 8:00 and we were at home until 10:50, when we went to the YMCA and the library. Between 8:00 and 10:50 EK stayed dry and peed in the potty all five times I took her! It was our most successful run to date!

Friday, June 7:

We've only been at it for 3 hours today, but we've been pretty successful so far. She had a small accident in the playroom, but was able to stop it and then finish in the potty. She's gone in the potty three times this morning and has held all pee for the last hour. I'm not going anywhere until later tonight, so we should get a full day of training today. My only fear now is that she's due for a poop at some point today. I just hope we catch her in the act so she doesn't parade it through the house like she did last time!

While we've had some success getting her to go int he potty, our next challenge is getting her to initiate it. She will not go on her own, and even when we ask if she needs to go she's unresponsive. We just have to force her to go sit down on the potty. Hopefully after a week or two of this she'll realize it's part of the routine and she'll start to initiate it herself.

We'll post more details as we continue training!

Photos of EK from 5/18 & 5/19

What's new with EK?

Well...
The regular school year is wrapping up for Eva Kate next week. It's been a good year at Trace Crossings (special Ed preschool) and Discovery UMC for Mother's Day out. She's had some really great teachers and made some progress along the way.

EK qualified for extended school year at Trace and will be going 2 days a week. We are enrolling her in a gymnastics a class for children with special needs and adding in ABA therapy this summer. Paul is taking the summer off and I'll be working most everyday. Hopefully, Daddy can make some big steps towards potty training.

Speaking of potty training she is doing really well. She consistently will urinate in the potty but still will go in a diaper too, but stays drier for longer periods of time. I am just hoping she will learn to poop in the potty over the summer.

Met a super inspiring patient today that has an autistic 12 year old son who as she put it has "over come" his obstacles with autism. She gave me several great resources, including more information on the DAN doctors. Paul and I are strongly leaning towards trying to find one to see EK. If nothing else to run some metabolic profiles and allergy testing for us. I have even thought about putting her back on a gluten free diet for the summer to see if we could notice any major improvements in her speech now that her vocabulary is increasing.

EK's diagnosis has been heavy on my heart this week as we have registered her for a new Mother's Day out program for the fall and looked into additional therapies. Sometimes I get so beat down over this and feel like no one can relate. My director of nursing at the hospital I work for has four special needs children and shared such a touching and surreal story with me today.

Our Trip to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Spring is slowly getting here!

 Watching the spitting dinosaur!

Eva Kate Jones :)  She loved wearing Daddy's Indiana Jones hat to the zoo!

She wanted to ride the carousel, just not one of the animals

She loved chasing her friend Shelby through the cave at the zoo :)

EK, is 3 years and 7 months today.  She continues to be such a joy in our lives.  Spring has sprung in Alabama and we have enjoyed some fun outings with our taste of warmer weather here and there.  Last Friday we spent a day at the zoo with some friends from church.  Eva Kate loved seeing all the animals and even got to experience the cool Dino Adventure at the Birmingham Zoo.  She loved looking at all the mechanical dinosaurs and her favorite was the "Spitting Dinosaur".  My friend Courtney Snuggs captured the photos above and the first one was EK watching the dinosaur who liked to spit water at the zoo guest.  Eva Kate was so fascinated by it all.  She also enjoyed the petting zoo where she was able to touch sheep, goats, and pigs.  She named all the animals we saw without prompting if she knew their names and repeated the animal names of the ones she didn't know after we told her what the animal was.  She is making so much progress and continues to amaze us daily.

We had such a blessed Easter, filled with fun memories.  We went to an Easter egg hunt at Riverchase UMC on the Saturday before Easter where EK and Mollie hunted for eggs and did Easter crafts.  On Easter morning we had so much fun watching the girls get their goodies that the Easter Bunny left and fighting over the new toys he left too!  Then it was off to RUMC to church for Easter service.  (Pretty Easter dress photos to come, once I dump them off our other cameras).  After church we went to Gardendale where we ate lunch, took family Easter photos, and hunted for more eggs at Grandmommy's house with my sister Sandy's two children, Cole and Sarah.

Help Uncle Kevin!

 Starting to get good at finding eggs!

She liked swinging her new Easter egg basket and watching the eggs fly out!

"Hey Daddy, it's a poopull egg" :)

Photos of Eva Kate from Jan. & Feb. 2013

Hard Month- But EK is shining!

This month has been difficult, not from Eva Kate's issues but the deaths in our family. "Nana" EK's great grandmother passed away on 2/2/13. Today 2/24/13 marks the two year anniversary of my Dad's death, EK's "Grandaddy". Besides all the loss and tears- we've had happy tears over Eva Kate's progress with speech. She is stringing together small 3-4 word phrases that actually make since and people other than Paul and myself can understand her. She says "Molyee" on a daily basis and is even giving her sister hugs and kisses from day to day. They tattle on each other and fuss like normal siblings do. Some of my new favorite EK phrases are, "Come on Mom" and "want some more _____" when making a request. I give God the glory for these great improvements and can't wait to see how He will continue to bless our lives through our beautiful EK!