Monday, October 31, 2011

Happy Halloween!

We take Star Wars seriously around here - Ben is a Clone, Logan is Obi-Wan Kenobi and Sean (not pictured) is Anakin Skywalker. Have a great time trick or treating!

Wednesday, October 26, 2011

Too Busy...

going to Hot Air Balloon Festivals,

spending time with Grandma and Grandpa,


picking pumpkins


and eating apples off the tree
to write.

Wednesday, October 19, 2011

NASCAR has a New Fan

As if the Disney World vacation was not enough, the Kyle Busch Foundation gave Charlotte area Grin Kids' families tickets to the Dollar General 300 Race. Although Ryan had been twice to a race, the rest of our family were newbies.

Ben loved the excitement and the noise, but eventually he was too excited to even sit. Ryan took him for a bite to eat and a stroll around the speedway while I stayed with the other boys who were mesmerized by the ecperience.

When we caught up with eachother - I noticed Ryan taking money out of Ben's pockets. To my amazement, Ryan told me that two different and random people gave Ben money - totalling $25. Although we laughed, I am not sure how either one of us felt about it. A discussion for another day.

We had a great time - it was truly an experience and I was glad to see what it was like. The noise was overwhelming, even with ear plugs. Unlike other sporting events, there's little cheering or yelling since nothing can be heard above the roar of the engines. Next time I go, I will get the ear phones that allow you to tune into the car you follow and listen in on the communication between the pit crew and driver.

Seeing some of the other families from the Disney trip made it like a mini-reunion - probably the best part of the entire night.

Monday, October 17, 2011

Given the Boot

I usually do not get sick or have any type of ailments, but these last few months have proven otherwise. This summer I developed a cyst in an uncomfortable location and it got infected. Many doctor visits later, shots, needles, medication and Sean (yes, my three year old) holding my hand, I got through it.

Now I am wearing a boot on my right foot. I have had pain in the arch for over a month, mostly at night. During the day I was fine, I even ran two 10k races during this period of time. The night pain was increasing along with my pill popping (just ibuprofen), so I finally saw the orthopaedic doctor. Unable to pinpoint what exactly is ailing me, they gave me a big boot to wear for three weeks and anti-inflammatory pills.

What a way to end my 40th year!

Sunday, October 16, 2011

eSpecially Parents September Edition: Denise's Story

Luke and I are new to the public education system in Texas. Beginning soon after Luke’s birth, we had ECI come to our house several times a week for PT, OT, deaf education, and swallowing therapy. I was able to sit in on all Luke’s sessions and knew exactly what to work on with him. Since turning three, Luke’s case was handed over to the public school system which seemed to complicate things a bit.

Since Luke’s birthday is 10 days before the end of the school year, we were able to enroll him in school and get our feet wet with the preschool program for children with disabilities (PPCD). Luke is deaf and wears a cochlear implant for hearing. Because he also has other delays, he doesn’t meet the qualifications for the deaf ed program and is in a class with kids who have all different types of disabilities. One of our biggest concerns with Luke’s development is his very limited communication. Unfortunately, none of the other children in Luke’s class are hearing impaired so it’s hard to know if Luke is in the ideal setting to promote his oral communication.

Another frustration is the change in staff. Last year I was able to sit in on a class and meet with his teacher to discuss his learning plan. Everything was going well. His teacher seemed to be patient, caring, experienced and on board with trying to develop Luke’s speech with total communication. She also gave me detailed accounts of his day and progress. I was sad to learn that this teacher was leaving just as we were getting used to her and excited to start a new school year with Luke her classroom.

Illness has also been a struggle for us since school started four weeks ago. Luke has never been in daycare before so he catches everything that is going around. The illness also passes to everyone else in the house so getting everyone, including myself, well has been my main priority this year. I’m hoping this will all level off soon so I can focus on getting Luke better settled into his new preschool program and get myself more involved in the classroom.

Now that our family seems to be feeling better it is time to get down to business. We are trying to schedule an ARD meeting (not really sure what it stands for) to sit down with the school therapists and administration. From what other families have told me this can be a very intimidating process. We’ve been through one before but had our ECI professionals attended on Luke’s behalf. I know we need to fight for more speech services since Luke can clearly benefit from this daily through the school. Right now he gets only 15 minutes twice a week. Hardly enough time to settle down an active toddler and minimize other distraction to really focus on the therapy.

We do receive speech privately for an hour twice a week but because of his poor communication skills, Luke is starting to get frustrated and has resorted to banging his head and having tantrums. I’m not too worried about OT/PT service since Luke receives more than 90 minutes of eac,h weekly through private therapy. He is also walking and has fairly
good fine motor skills.

Even though we clearly have some issues to work out, I’m glad that Luke is able to go to preschool this year. I’ve met with his teacher and she also seems very caring and focused on getting these children to learn.

New to eSpecially Parents Series? Read more here.

Thursday, October 13, 2011

Disney: The Final Word

It would be unfair not to share the amazing things the Grin Kids staff had planned for us. If you plan to apply for this program and want to be surprised, do not read this post. It will be a spoiler.

First, we pull into the airport departure section and a Grin Kid volunteer (just a good person who wants to help out) carries our bags. This means that neither Ryan nor I touched a bag once we got out of the minivan. We were able to focus on the 3 boys and getting checked in. Grin Kids supplied luggage tags for us, especially marked so they would make it directly to our hotel room.

After security, which they did try to make it as easy as possible for everyone, we went to the concourse where we were welcomed by Police Officers, Santa Claus, Rufus from the Charlotte BobCats, Sir Purr from the Carolina Panthers and many other local and national mascots. Each one had goody bags to give out to every child.

Dancers performed in the middle of the concourse, music played and time flew by and before I knew it, we were ready to get onto the chartered jet, decorated with the Carolina Panthers logo. Every seat contained a snack bag. (I add this so you can start the food count.)

Our sendoff was marked by the airport fire department making a rainbow arch with their hoses spraying water over the plane. Once we were in the air, we were given lunch and drinks. Then they came around with a fruit basket. Then a candy basket. Then ice cream sandwiches for all. It was a kid's dream flight.

Once we landed, we were able to get right into the special coach buses without entering the airport. Four motorcycle officers from the Sheriff's department gave us an almost non-stop ride to the Disney resort, stopping traffic, lights and anything else that got in our way.

At the hotel, we were given packets and keys and told our luggage would arrive shortly. And this was only the first 5 hours of this vacation.

Each day the staff had something special for us planned. Without giving every detail, here are a few of the special things planned just for our group - we met The Lion King cast, had premier seating at the Fireworks show in Epcot, and met and got autographs from Mickey, Minnie and Goofy.

Each evening when we returned to the hotel, one bed would be completely full of stuff - t-shirts, gifts, toys, food and even bags to hold the loot.

The Grin Kids website describes this trip as a "once in a lifetime vacation" and they are accurate in saying so. The connections the staff have made over the last twelve years to build this program and experience are so deep. It is obvious from the staff at US Airways to the people who welcomed us home in the airport and everyone in between, that the Grin Kids mission is one they fully support. They make everything as easy as possible for families traveling with a child with special needs and then add lots of sugar with many many cherries on top. It was their goal to make us all feel truly special, and I think we would all agree that they succeeded.

Resources & Application Information:

Barb McIntyre, the woman behind Ace & TJ's Grin Kids

Tuesday, October 11, 2011

Disney: Hug Tour

We met many characters along the way. Hugs were abundant.

A Guinness World Record could have been set with this hug. And if you are wondering who this am I.

Logan was concerned that Santa was here and not making toys in the North Pole. Santa told Logan that he was in a supervisory role and had elves to do the work. Logan still thought he was cutting it too close to Christmas.
His disappoval was evident.

Notice Ryan's hand around Mickey's waist.

Ben learned quickly that the characters hands were great to chew on.

Ben only had eyes for Jessie. Poor Woody - he was intent on giving Ben a big hug.

Who is the happiest in this photo?

For more information on the Ace & TJ's Grin Kids Organization, check here.

Monday, October 10, 2011

Disney: The Grin Kids & their Families

Photo credit goes to Angus Lamond, the photographer on the Ace & TJ's Grin Kids Trip 2011

20 families were invited this year on the Ace & TJ's Grin Kids Trip 2011.  Families were from North Carolina, Virginia, Alabama and Tennessee. We did not know each other before we started on our journey, but by the end of the 5 days in Disney, many connections and friendships were formed.

Although we did not stay together as a group all day, everyday - it would be impossible with over 100 people - it was great to see another family on a ride or share a spot on the parade route. Our common denominator, raising a child with special needs, was a good conversation starter, and lead us to other topics, like our work, family life and outside interests.

It was a relief when, as a group on the plane, bus or restaurant, and Ben was yelling or making loud noises, that not one person was looking at us in a way that said, "Could you please quiet that child?" We were all in the same boat and understanding and patience were plentiful. Judgement was not.

If you have ever gone on a retreat or been part of something large, it is hard not to form a special bond with the other people with you. The Grin Kids Family, for which we are now a part of, is large - 12 years worth of trips. Families from past trips did several special things for us - an embroidered Disney bag with our family name on it, a refillable Disney cup and countless other gifts that made the trip even more special knowing that people were thinking about us.

The gifts were beautiful, but the person who made the most impression on me was the woman, who welcomed us at the Charlotte airport. She was a Grin Kid on one of the very first trips. Obviously, the family bond is strong. The experience never forgotten.

Monday, October 3, 2011

Disney...Here We Come

Just got back from the Disney Orientation meeting for the Grin Kids trip. At one point, I had tears in my eyes and we are not even there yet. There may be a flood when we actually arrive on Wednesday.

It is amazing what this organization has in store for us. Every detail is planned out to make it simple to travel with our children with special needs. We drop off our luggage at the airport and do not see it again until we get to our room. Meals, transportation, park passes, special events, souvenirs, snacks...anything you can think of is all taken care of for all 20 families.

The Ace & TJ Radio Show and Grin Kids staff will be updating their Facebook and website pages daily while we are in Disney World. If you want to follow along, here's where you can find us:

Ace & TJ will be interviewing families throught the trip and playing the responses on their morning show.

If you are impressed with what you see, consider volunteering or donating for next year's Grin Kids Trip.