We all had so much fun visiting the Pittsburgh Renaissance Festival and cannot wait to go back! Here are some pictures from our day…
Tuesday, September 16, 2014
We all had so much fun visiting the Pittsburgh Renaissance Festival and cannot wait to go back! Here are some pictures from our day…
Sunday, July 27, 2014
Well hello there…I know it’s been awhile but here I am. Life has been interesting in this house the past few months and I think we are just now starting to make sense of things. You see, the road we walk in life is never straight or smooth and it rarely goes in the direction we expect it. Not that it won’t still take us to the same goal but often times we need to take a different path in order to learn and grow. Recently we had a whole new path set before us. The path of ADHD and Autism.
I’ve been wanting to post about this for a long time but just wasn’t sure how to put my thoughts and feelings down. You see when Monkey was diagnosed with Juvenile Arthritis I guess it was easy for me share my fear and concern because I wanted people to know about JA and the struggles that kids like Monkey go through. JA is not something many people know about and while it has no clear cause or cure it’s easier to explain medically to others. Monkey has an auto-immune disorder and his joints often have too much fluid causing him pain. Not necessarily simple but most people can understand that. This though, this is different. Everyone knows about ADHD and Autism and unfortunately many people have preconceived thoughts and opinions about these diagnoses. Thoughts and opinions they aren’t afraid to voice.
Zimm has always been a spitfire little boy. Even before he could walk we knew he was going to be our challenge. I mean, this little guy would just look at us and laugh when we’d tell him “NO” as he’d crawl toward the TV and touch all the electronics. As he grew he couldn’t stand or sit still…this is how he earned the nickname Zimm. He reminded hubs of a third base coach giving signals to his players. We figured it was just a phase. In the past 7-8 months though things changed and made us start to wonder if there was something else going on. That his behaviors weren’t just little quirks.
The process was long and taxing. It frustrated us to no end especially when we were struggling with extreme behavior issues. It strained our relationships here at home. I felt like we were in a revolving door just going around and around and not getting any closer to any answers or solutions. When we decided to seek a neuropsychological evaluation I was shocked when I was told that the earliest appointment was over SIX months away. That wasn’t good enough for me and if you know me you know that’s when my fight came out. My little man needed help and he needed it soon…not six or more months from now!
I called friends and they gave me names of people who might be able to help. I called those people who gave me more names. I left messages and told our story to at least 10 different people pleading with them to help me find him an appointment. Finally I found a practice with an opening that was only two months away. Still a wait but better than waiting until August. His initial appointment was set for the end of April. After meeting with the doctor we scheduled his evaluation for June 5. Finally, we had a date. Even though we still had more waiting to do having a date was such a relief.
Within a couple weeks of the evaluation we had Zimm’s diagnosis. ADHD combined type and Autism Spectrum Disorder Level 1. It took a while for the words to sink in. On one hand I was thankful that we finally knew what was going on. We could some what understand Zimm’s behavior now. On the other hand it was overwhelming. I knew some about these disorders but here were were again with a new diagnosis and unsure of where to go.
We are still in the process of figuring things out and processing the information. Thankfully we have been blessed to have friends who have children with similar diagnoses. I have messaged them and sat with them and cried to them. They have told me that while we may have a long road ahead it is one that with many resources. They have encouraged me that we are doing everything we need to do right now so that he gets all the help he needs and deserves. I still find myself so intimidated.
I worry that this “label” will change how people see him. That they will only see his diagnosis and not his beautiful personality. I’m worried that people won’t take it seriously. He is VERY high functioning. I’ve already gotten so many “Wow, really?! I’d never guess that in a million years!” comments. I’m worried about making the right choices for him. Do we continue with cyber school or send him to public school? How will he handle that transition? How will he do around other kids? How will he act toward his teacher? The school worry is my biggest worry right now. He so desperately wants to be like his big brother and we want to provide every sense of normalcy to him.
This is where my head has been the past few months. I’m sorry that I’ve been away and haven’t shared but I just wasn’t sure how. But, here it all is and I hope to share more as the days go by. Blogging has always been a therapy for me…a way to share and process my thoughts and feelings. I hope that just as my posts on JA have reached parents who needed support that my posts on ADHD and Autism reach those who are going down a similar path. Thank you all for your support and love through this. It means so much to know that we are not alone. <3
Sunday, July 20, 2014
Here I sit…staring at a blank page wanting to blog but waiting for the words to flow out of my fingers. The words are swirling inside my head like they are caught in the twister from Wizard of Oz. Where is that good witch and her pretty pink bubble when you need her?
Maybe if I had some little munchkins around me singing and pointing me toward the yellow brick blogging road I’d have an easier time. Wait, who am I kidding…I have three little munchkins here and they’re the ones who brought the winds to power the storm! They are pretty cute though.
Maybe a sweet pair of ruby slippers would take my mind back to a state of clarity and organized thoughts. Ah, who am I kidding? I don’t think that ever existed in this mind of mine. The shoes WOULD be nice though.
Soon I’ll get these thoughts in line….soon I’ll be back to pouring out my thoughts and sharing with you from my heart. I hope that you’ll stick around and wait…
Monday, June 23, 2014
For 200 million years the Dinosaurs ruled the earth…
This July they will be returning for a live arena spectacular at Consol Energy Center for only eight performances July 30 – August 3.
Dinosaurs once again roam the earth when the spectacular production, WALKING WITH DINOSAURS THE ARENA SPECTACULAR, based on the award-winning BBC Television Series, returns to North America this summer.
WALKING WITH DINOSAURS THE ARENA SPECTACULAR will be performed at CONSOL Energy Center from a limited 8 performance engagement from July 30 to August 3. Tickets are available online now as well as in person at the Dick’s Sporting Goods Box Office at CONSOL Energy Center.
The show that critics have called ‘awesome’, ‘spectacular’ and ‘breathtaking’ will stop in Pittsburgh from July 30 – August 30, 2014. This updated production will showcase changes to the dinosaurs based on the latest scientific research including the likely feathering of some species. Worldwide, more than eight million people have seen this show in 243 cities and over 2,000 performances.
WALKING WITH DINOSAURS THE ARENA SPECTACULAR is produced by Global Creatures headed by CEO Carmen Pavlovic. Pavlovic said, “I am thrilled that WALKING WITH DINOSAURS THE ARENA SPECTACULAR is coming back to the US in July - its first visit to North America since its inaugural 2007 sell-out tour. A new generation is ready to experience these life–size beasts in this awe-inspiring spectacle, which has still not been matched in terms of scale and quality. Many of our creatures have “evolved” since the last tour, now featuring distinctive display feathers, head crests and tail fans, reflecting recent discoveries about the physical nature of these massive creatures. This show remains a must-see for audiences of all ages.”
The show depicts the dinosaurs’ evolution with almost cinematic realism. WALKING WITH DINOSAURS THE ARENA SPECTACULAR has scenes of the interactions between dinosaurs, how carnivorous dinosaurs evolved to walk on two legs, and how the herbivores fended off their more agile predators.
Ten species are represented from the entire 200 million year reign of the dinosaurs. The show includes the Tyrannosaurus Rex, the terror of the ancient terrain, as well as the Plateosaurus and Liliensternus from the Triassic period, the Stegosaurus and Allosaurus from the Jurassic period and Torosaurus and Utahraptor from the awesome Cretaceous period. The largest of them, the Brachiosaurus is 36 feet tall, and 56 feet from nose to tail. It took a team of 50 – including engineers, fabricators, skin makers, artists and painters, and animatronic experts – a year to build the production.
The history of the world is played out with the splitting of the earth’s continents, and the transition from the arid desert of the Triassic period is given over to the lush green prairies and forces of the later Jurassic. Oceans form, volcanoes erupt, a forest catches fire -- all leading to the impact of the massive comet, which struck the earth, and forced the extinction of the dinosaurs.
The show originated in Australia, where after years of planning, WALKING WITH DINOSAURS THE ARENA SPECTACULAR came to life at Sydney’s Acer Arena in January 2007.
Tuesday, June 10, 2014
We had such a WONDERFUL weekend in Columbus, Ohio on their Roar and Explore Getaway! I want to take a moment to send a huge thanks to Experience Columbus for the wonderful family vacation and to the other amazing blog mommas (and families) we spent the weekend with…Nadine (The Pittsburgh Mommy Blog), Kelly (Pgh Momtourage), Nicole (Champagne to Crayons) and Becky (‘lil Burghers)!
We had way too much fun this weekend to fit it all in one post so keep an eye out for a week full of Columbus on the blog. Trust me, if you haven’t made it to Columbus yet with your family you are going to want to plan your trip soon! So many wonderful things to do that are great for any family!
Tuesday, June 3, 2014
Now for the picture heavy part of the post…enjoy!! xo
Mariah (JA warrior) with Dr. Poff. Silly Zimm!
Monkey with his rheumatologist Dr. Kietz. Nonna (my mom) with the boys.
Silly Pirate Parrot!
Most of our team with the Pirate Parrot.
(We had such a hard time getting a photo of the entire team all together! lol)
The Parrot flirting with my mom-in-law, Pat.
Zimm once again! Cousins!
Another team picture but we're missing Mary, Jen and Ethan.
I've been talking with this momma for months and it was so awesome to FINALLY meet in person.
Friday, May 23, 2014
(Here are pictures of us meeting Rylee and her mom, Jen, at the Walk last year.)
Today I’m sharing Rylee as JA Spotlight because this girl continues to amaze me. I see in her what I hope that Monkey will grow to have. This girl won’t let JA slow her down and she’s got her mind set to make sure everyone knows about JA and what kids like her and Monkey go through. Rylee was chosen as one of this year’s walk honorees and boy does she ever deserve that honor! This year she set her fundraising goal even higher and guess what…she has raised over $8,000! She’s also done so much advocating that she was invited to be part of the Arthritis Summit in DC in March and recently was honored by Pittsburgh Mayor Peduto. She even got the attention of the local new station! (You can watch that feature here: http://pittsburgh.cbslocal.com/video/10177699-mayor-peduto-honors-young-arthritis-advocate/)
I recently wrote to Jen, Rylee’s mom, congratulating them on all they’ve done and asking to feature Rylee on the blog. When I asked her to share her thoughts here is what she had to say:
I am glad that she has decided to hit this disease straight on. Her strength is an inspiration to me as well. Just a short time ago, she was afraid to tell anyone for fear that she would be treated differently. We have had many discussions and tears in this house about this disease and why her. She has now accepted this and wants to become the voice for everyone that is either scared or embarrassed about having this. Our goal is to make everyone more aware of juvenile arthritis and what these kids go through. If we don't speak openly about this, things will never change. She is all about changing the way we view this disease and educating people about its existence. With her standing up to it, she has had more people come out and say, "that's what I have". She doesn't want anyone to feel sorry for her but to join her on her journey of reaching for a cure.As a mom of a JA kiddo I am so incredibly proud of Rylee. She has shown show much poise and strength and she is truly such a wonderful role model for other JA kiddos. I pray that I can remain in contact with Rylee and Jen and that someday when Monkey is older he can lean on her for support…the kind of support only some one who’s experienced the same things can offer.