I am absolutely honored to have been featured on the cover of the Saratogian today. I am even more honored to be able to say that I am Giovanni's mom. He is the strongest, most kindhearted little boy I have every met. I am so proud to be his mom smile emoticon Happy Mother's Day everyone.
Why should I make a donation to your inclusive playground project?
Three years ago I would have asked the same question. I didn’t have a child, let alone a child with a disability. I would have assumed that things like the American with Disabilities Act would make sure that children with disabilities had everything they needed. WRONG! I will be the first one to admit that I was wrong.
I used to be you. I never had a reason to even give something like this a thought. It didn’t have anything to do with me. Well, guess what, life changes. The sad fact is that this can happen to anyone at any time. A disability isn’t necessarily something that you are born with. One morning I woke up and I was a mom to a child with a disability. It isn’t something that I could prepare for, and I sure as heck didn’t see it coming.
We all say that we want the world to be a better place, but how many of us actually mean that? Change doesn’t happen by itself. It takes someone strong enough and brave enough to take a stand, challenging people’s perceptions. If you can’t do it, then support someone who will. I have given up months of my life, working so hard to make this project a reality; time I could have spent relaxing with my family and doing fun things with Giovanni. I made this sacrifice for my community, for all children with disabilities.
April 30th is a date that will never forget. Three years ago today, my husband and I were presented with DNR papers after I went into preterm labor with Giovanni. We were told that, if born, he would only have a 30% of survival. That night, as I was laying in my hospital bed, I had a "talk" with Giovanni. I told him that, while I was excited to meet him, the world just wasn't ready for him. I begged him to just hang on. I made him the promise, no matter the outcome, that I would spend that rest of my life fighting for him, doing whatever I needed to ensure he had the best life possible. As I look at this picture, I can't believe how far we have come. I love you Giovanni! Keep proving everyone wrong!!
Today we broke ground on what will become the first inclusive playground of this caliber, in Saratoga County. This playground will go above and beyond the minimum ADA standards for new playgrounds, creating the opportunity for children of all abilities to play side by side. I can only hope that this project will inspire other municipalities to step up and provide this opportunity for the children of their communities. Building a playground that can be used by all children should not be a special project, it should be the norm!
I want to take a minute to thank everyone for their hard work and dedication to this project including Town of Milton Supervisor Dan Lewza, Assemblyman Jim Tedisco, The Chamber of Southern Saratoga County President Pete Bardunias, Saratoga County Chamber of Commerce, Theresa Wilson, Jason Miller ,the entire Milton Town Board, and all of the Town of Milton employees that are working on the site.
To learn more about this playground and how you can get involved, please visit www.cmcdfoundation.org/inclusiveplayground
Please consider sharing this page to help us to make this project a reality www.youcaring.com/miltonplayground
Giovanni wanted rainboots like the other kids, except his braces made that impossible. A good seamstress and a couple of zippers, problem solved!
Dear Misinformed Lady,
The other day I was having a casual conversation with a group of women I’ve known for quite some time regarding a special project I’ve been working on through the foundation I founded. I was talking about how I haven’t slept in months as I’m juggling a full-time job, the general day-to-day operations of a nonprofit organization (all volunteer), a child with special needs and my role as a wife. Trying to keep the focus on the positive change I’m trying to create (and not the bags under my eyes), I started going into detail about the inclusive playground I’m fundraising for in my community.
I’m not sure why you felt compelled to enter this conversation when I don’t even know you, especially given that you did so with bad intentions. I have to be honest — when you first began questioning me about this playground, I truly thought you were interested in my project. You started asking about your apparent role in it. Since I was a bit taken aback, I’m not sure if I adequately answered your questions. Just in case, I’ll take a minute to thoroughly answer them now.
1. Why would I want to financially contribute to an inclusive playground?
Let’s pretend for a minute that this question was formulated out of genuine curiosity and not sarcastic evilness. If you don’t know, an inclusive playground is a playground where children of all abilities can play together. It’s specifically designed to provide ample opportunity for physical, social and sensory development of children with disabilities, as well as children who develop typically. Believe it or not, new playgrounds are only required to provide access to 50 percent of elevated play components and one type of each ground-level activity (swings, spring riders, panels, etc.) offered for children without disabilities. So if a child without disabilities has access to six different swings, a child with a disability is only required to be offered access to one, and, even if a child with a disability is offered access to a swing or spring rider, it doesn’t necessarily mean they can use it. If a child is unable to sit up on their own, how can they possibly support themselves on a typical belt swing? I guess it is the thought that counts, right?
Back to the question. By contributing to an inclusive playground, you’re going to give all children in your community the opportunity to play on a playground, including yours. Short and sweet.
2. What does a disabled child playing on a playground have to do with me?
Ugh! First of all, I prefer person-first language when we talk about “these people.” By saying a “disabled child” and not “child with a disability,” you’re implying that the disability defines the child… and it doesn’t. Not a big deal, but learn from your mistakes.
OK, when you asked this question, my heart shattered into pieces. It’s an unfortunate reminder of the barriers that still exist for my child and all other children out there with disabilities. It’s this type of attitude that continues to allow these barriers to exist. It’s not my child, so it’s not my problem, right?
Well, let me tell you my story.
Before my son, Giovanni, was born, I never gave a thought to what opportunities did and didn’t exist for children with disabilities. It wasn’t because I didn’t care. I just never had a reason to think about it. I guess I always assumed they had everything typically developing children had. Why wouldn’t they?
Although we didn’t get an official diagnosis for my son until two weeks before his first birthday (the year from hell), he had problems right from the minute he entered this world. While the inequalities didn’t rear their ugly heads until he got a little older, it was only a matter of time until reality hit. It was a peaceful summer afternoon, the sun was shining, the birds were chirping, the… you get the picture. For the first time, instead of using the little plastic swing set Giovanni received for his birthday, we stopped at the playground just down the road from our house. The playground was bustling with rambunctious children, and we were excited to have Giovanni play there for the first time.
I naively walked into the gated play area and set Giovanni free. After about 15 minutes, I noticed he wasn’t really interacting with the other children. He was just walking around the perimeter of the main play structures. Not thinking much of it, I scooped him up and brought him to the play area specifically designed for smaller children. The top ramp, right above the slide, was being guarded by three little girls, who vocally expressed that they didn’t want him there because they don’t like boys (got to love girls). Despite the lack of invitation, Giovanni was determined to get up to the platform and play with them. But wait, why wasn’t he going up? Unfortunately, not only was the lowest platform too high for him to lift his leg up onto, one of his AFOs (a rigid brace that runs from his knee to the end of his foot) got caught on the edge of the lowest platform.
My world came crashing down. I was starting to realize all the events I somehow missed since the moment we walked through the gate. He was walking around the perimeter of the play structures because he wasn’t able to step over or climb over the barrier that held the wood chips in place; he didn’t want to walk around the wood chips, even after we lifted him over the barrier, as his shoes were filling with wood splinters when he shuffled on his toes; he was a bystander because he had to be. My son did not have the opportunity to play on this playground — the playground in his neighborhood.
So to answer your question, I never thought it had anything to do with me either.
3. (And this is more of a statement) Well, my child can play on any playground he chooses.
Well good for you. It was at this point that I realized I wasn’t going to get through to you. I realized that, for some unknown reason, your defenses were up. There was no point in continuing my efforts to share some of the personal details behind this amazing project.
The important thing to remember is that I too used to think (or not think) this was my responsibility. I know it’s hard to understand something you’ve never experienced; I get that. But what I ask, what I’m begging you to do, is to try putting yourself in my shoes, my son’s shoes, for just one minute. Think how it feels to see your child struggle with something as simple as playing, how it saddens you to realize that society still thinks your child deserves less than what a typically developing child does. Think about how it feels to be that child, unable to play with your friends because of something you have no control over, the feeling of isolation and sadness that fills your heart because you’re different from the other kids.
Just remember that I used to be you. I used to be the person, the woman, the mom, who didn’t think about that child across the room in the wheelchair, the person who just smiled and walked away as that child sat by themselves while the other children played.
To learn more about this inclusive playground project, please visit www.cmcdfoundation.org/inclusiveplayground.
And we are quarantined!
This stupid rash continues to evolve and we still don't know for certain what is going on. The pediatrician has basically quarantined Giovanni to the house until further notice. My husband spent the morning texting her pictures so she could see what the rash looks like compared to yesterday. He goes back to the doctor Thursday morning so she can reevaluate the situation. Apparently they are concerned as we were asked to come to the back door to avoid exposing him to other children...which I completely understand.
The initial thought is that this could be chicken pox. My gut tells me that it is not, and that it is probably being caused by a virus. He is sooo itchy so we have had to give him Benadryl several times.
If you remember, back in June he was in isolation at Albany Med for a rash that looked just like measles...and this was right in the middle of the measles outbreak. Turns out the rash was caused by a combination of Parvovirus and Coxsackie. I hope history isn't repeating itself...
Over the past couple of days, Giovanni has seemed "off." When I got home from work today, he had just woken up from his nap (which is strange as he never sleeps that late) and was sitting eating blueberries at the table. A few minutes later I noticed that he was having what looked like full body tremors. This went on for several minutes, followed by very bizarre, non-purposeful movements of his arms. It then completely stopped, and he continued on eating. He seemed a little groggy, but nothing too concerning.
A little while later he started moaning and itching his legs. I thought maybe he scratched himself so I pulled up his pant leg to take a look. His leg was covered in what looked like insect bites. I immediately removed his pants only to find that both legs were covered in these bumps. My husband and I noticed that these bumps were multiplying rather quickly, so we decided to bring him to be seen by a doctor. Luckily, our pediatrician has walk-in hours until 7, so we were able to get him right in. By the time we got there, he had these insect bite-like bumps on his torso and arms.
The pediatrician was absolutely baffled. She said that there wasn't anything they could do at this point as we don't know what it was from. She advised me to take pictures of the rash so that we could track its progression. We are giving him Benadryl to keep him comfortable (he is so itchy) and keeping our fingers crossed that it is better tomorrow. If not, back to the doctors we go.
What better way to spend my Friday evening then helping the Town of Milton to unload the first truckload of playground equipment. These two main structures will become the base for the new inclusive playground. Help the CMCD Foundation to provide the additional play equipment to truly make this a playground for all abilities. You can buy a brick to become part of the permanent walkway or make a tax deductible donation by visiting www.cmcdfoundation.com/inclusiveplayground This is happening, so the time is now!
Today was the first day in a longtime that it was warm enough for us to go outside to play. Giovanni had a blast sitting in the snow, playing with his tractors. The warm sun on our faces was a nice reminder that better weather is on its way. We can't wait for spring!!!
These past couple of days have served as a painful reminder of the inequalities that still exist for children with disabilities. Making improvements to better the lives of these children should be seen as something that is necessary, and done because it is the right thing to do. Their right to equal opportunities and equal quality of life should not be something used to support self-interests or for political leverage. Tonight my heart is heavy. It is times like these that I feel I will never be able to make a difference. And then I remember the promise I made to my son. I will continue to advocate and fight for his rights, as well as the rights of all children with disabilities. I will not stop until we live in a world where everyone is given the same opportunities in life. My son, my precious Giovanni, you have my word that I will do everything I can to make sure you have the life you deserve.
Apparently my little man is getting bigger! He had an appointment with his orthotist to evaluate the sizing of his current AFOs and they are now over an inch too short! Instead of bringing him back for a second appointment, she was able to cast his legs right away. The new braces will take about three weeks to make, so we still have some time in the old ones. One good thing about new braces is new shoes!
Happy belated Valentine's Day everyone! I spent the entire day with my little love yesterday and it was wonderful! He made me a little stepping stone with his hand print (still drying in the mold), and he had lots of fun with his Hungry Hungry Hippos game that we got him. With some strategic planning and a pair of noise buffering earmuffs, we were even able to enjoy a nice dinner out.
Hope everyone is enjoying their weekend!
Although we are so happy that Giovanni is finally home, he has had a difficult time making the transition between hospital schedule and home schedule. He has been in sensory overload, making it difficult to "pad" his environment to prevent meltdowns. Little things like the microwave beeping or the dogs barking are causing him to cover his ears and scream. Hopefully that will ease up soon.
As far as the hospital stay goes, we really don't have much information. He didn't have one of his questionable episodes, so I really don't think we learned anything new. He did have some abnormal brain activity detected by the monitoring software, but given how sensitive it is, my guess is that it is artifact. His entire video EEG, all 5 days of it, will be reviewed by an epileptologist for a final determination of findings. So right now we are waiting for the results, which take approximately 2 weeks to get back.
The plan moving forward is to try and record one of these episodes on video so it can be viewed by our local neurologist as well as his specialist in Boston. This is the tough part about epilepsy. It is so unpredictable and not clearly defined, especially given his type of seizures. It is very difficult to determine what are breakthrough seizures and what is sensory/behavior related. Sometimes the behaviors associated with his seizures are so bizarre, that it is difficult to confirm them either way. These are the times when I really wish we had a Magic 8 Ball to give us the answers....
I just wanted to let everyone know that we are finally home. After another 24 hours of a normal EEG, his neurologist gave us his blessing to go home. I will post a detailed update soon. Thanks again for all of the thoughts and prayers over this past week. We appreciated them more than you know!!!
So here we are, going on day 5 of this hospital stay, and we still don't have any answers. When we spoke to the neurologist this afternoon, he said that he was prepared to keep us through the weekend. I really struggled with the idea, so he asked me to stick it out for another 24 hours, at which time we will decide how to proceed. He said there was enough concern from his therapy team and the specialist in Boston, that he is willing to do what needs to be done to ensure Giovanni is getting the care he needs. I know that they really want to capture a full episode but I don't know how much more Giovanni (and this mama) can take.
These past 24 hours have been an emotional rollercoaster. Last night he got woken up by nurses as he had some alarming movements in his sleep. They were just responding as they were supposed to, but abruptly waking up a 2 year old at 1:15am never leads to anything good. After two hours of screaming I finally got him to settle down.
This afternoon he had a period of unresponsiveness. He was not responding to me or any of the nurses, and lets just say there was a moment or two of panic. The neurologist was able to pull up the video when he came in and thought it was rather bizarre. While nothing immediately jumped out at him on the EEG, he said that it needed to be reviewed by the epileptologist. The plan is to watch him over the next 24 hours and then regroup tomorrow afternoon to come up with a plan.
Today was a little better of a day, aside from the sleep deprivation. Giovanni didn't sleep well last night, which means that I didn't either. When we spoke to the neurologist this afternoon he said that there was a period last night where the EEG pattern changed, but he cannot say whether it was a seizure or not as it has to be reviewed by the epileptologist. My gut says that it wasn't as I know the detection software they use is quite sensitive, but who knows.
It is hard to explain this monitoring, but essentially he is hooked up to an EEG that is constantly recording. He is also under video surveillance at all times...which means I am too. If I see this "bizarre behavior" that he has been exhibiting I have to press a button the marks the video and EEG and it will be immediately reviewed. If he doesn't have an episode, therefore I don't push the button, the entire EEG along with the video will be reviewed after discharge. This whole process takes about 2 weeks.
I am hoping to be able to bring him home Thursday, Friday at the latest. Despite being away from the comforts of his home and his familiar environment, I have to say he is adjusting rather well...minus the sleeping part.
Thanks again for all of the thoughts and prayers. We really appreciate them!
This morning Giovanni was admitted to the EMU on the Neuroscience floor at Albany Med. The decision came to admit him after some questionable episodes of bizzare behavior (not his typical seizures) so his doctor at Boston Children's Hospital gave us the choice of being admitted there or going to our local medical center where his local neurologist is. We obviously chose to stay local, and given the snow storm we had today, I think we made the right choice.
Today was a tough day for all of us. It took them over an hour to get all 30 something leads attached to his head so that they can monitor his brain activity. Since he is attached to all of these wires, including an EKG, someone is required to stay with him at all times. My husband wasn't able to make it down today because of the weather, so I haven't been able to leave his room all day. Despite all of this, his spirits are good and he is still smiling.
As of right now they are planning on keeping him for a few days, but we are taking it one day at a time. I will keep everyone updated. Thanks for your positive thoughts and prayers!