Today was one of the most challenging days that we have had in a long time. It was a day that I found myself questioning my ability to keep it together.

Over the past week or so, Giovanni has been off. I can't explain it, but he hasn't been himself. He has been extremely defiant with moments of meanness and aggression. This morning he woke up and was not happy. There was no way to console him as he didn't want to be touched. I had taken a half of day off from work to accompany him on his field trip with school to a local pumpkin farm. I was very excited to spend this time with him. He was excited about riding the school bus to the farm. None of this ever happened.

Giovanni spent almost 3 hours screaming and crying. None of my attempts to distract him or redirect him worked. They only led to him becoming more aggressive, where he was hitting, kicking, and throwing everything in sight. At one point, I just started crying my eyes out. He came over to me with a tissue to dry my tears. This gave me a glimmer of hope, that this horrendous episode was over. As soon as I acknowledged him, it started all over again. I don't know what started this horrific event, and I don't know what I could have done to prevent it or help him through it. I was at a complete loss!

Today I feel completely defeated as a parent. I experienced moments of such intense internal anger and rage, that I was left with feelings of extreme guilt afterwards. How could I feel such anger and rage towards a child? Today I was not a good mom. I feel that I have failed my child.

A Two Year Difference

It's hard to believe that these pictures were taken two years apart. The picture on the left was taken the same day that he had his first seizure...the day that I will never forget. Even though looking at these pictures remind us of sad moments in our journey, they also show us how far Giovanni has come. He is truly amazing!!

Today we found out that Giovanni's intake with Oncology/Hematology will be on Nov. 12th. Next week we will meet with the Ophthalmologist, to see if there is an explanation for his periodic loss of vision. I hate waiting!

Another Milestone

Today marked another milestone for Giovanni. He has officially started preschool! He was so excited to go play with his "new friends" and meet his new teacher. His preschool is located at a nearby college, so many of the students working on their degrees in education are student observers/assistants in the classroom. With all of the assistants today, the ratio today was 2:1!

Many people have asked me if he is attending a "typical" preschool. Yes he is. While he has qualified for services through the school district, it was decided that attending a typical preschool was to his advantage. He will be getting 3-1 hour sessions from a SEIT (special ed teacher) as well as 2-30 minute sessions with a speech pathologist while at school. He will also be getting PT once a week and OT twice a week, but these services will be provided in our home.

We are very excited to watch Giovanni grow and develop through this opportunity. He had a great first day and is so excited to go back on Monday.

In the next day or two I will post an update on what is going on in regard to the seizures. For now, I wanted to keep things positive, and celebrate this exciting milestone!

First Time for Everything

Tonight we had our first taste of what it feels like to be let down by the systems that are supposed to be helping us. One night a week, for 4 hours, we receive respite services for Giovanni. During this time, my husband and I do things that can be difficult to do with shopping, running errands, having a cup of coffee and enjoying each others company...things like that. Each week we look forward to this time, as it gets my husband out of "stay at home dad mode" and allows us to be a couple for a few hours. Tonight that abruptly ended.

Our respite worker, who Giovanni has grown to love, didn't show up. My poor little man was watching out the window for her for 45 minutes, anxiously waiting to play with his "friend." I finally sent her a text and asked if she was still coming. About 10 minutes go by and I finally get a response that she is no longer working for the agency so she isn't coming. No notice, no nothing.

My heart absolutely broke for Giovanni. He refused to do anything but watch out the window as he wanted to wait for his friend. How do you explain to a 3 year old that his friend isn't ever coming back??

After about an hour, we finally convinced him to come away from the window and go for a ride in the car. To turn lemons into lemonade, we took him out for his first Hibachi experience, and then for ice cream. As long as we have each other, we can get through anything

Bad Day

Another awful day for my little man. Apparently he went down for his nap a little later than usual, so he didn't get up until I got home from work. He seemed ok, and was super cuddly...and then a switch flipped. All of a sudden, for no apparent reason, he started screaming bloody murder, and started swinging at my husband and I. This went on for about 20 minutes. I kept getting him to calm down where he seemed alright, and then the screaming would start again out of no where.

Eventually I was able to get him downstairs, as I wanted to try and get some food into him. He immediately screamed that he wanted the TV off, and he just sat quietly. My husband and I kept noticing starring spells (seizures), probably 4 or 5 of them within a 30 minute period. He was completely off, as he wouldn't do anything expect sit quietly with his toy tractor.

These are the type of nights that really get to me. He kept telling me that he was scared, and the only thing that I could do was tell him that everything was going to be ok. It is so hard when he doesn't understand what is going on with him. There is nothing worse than not being able to comfort your child.

Happy Birthday!

Happy 3rd Birthday to the strongest, most determined, and funniest little boy I know. I am truly blessed to call you my son. I love you so much!

A Day I Cannot Forget

Two years ago today is a day that my heart will never forget. It was a day that made me question my faith. It was also the day that made me have to accept that there are things in life that are beyond my control. It was the day Giovanni had his MRI.

I think back to the exact moment I received the call from Giovanni's neurologist. I remember answering the phone in my bedroom, then falling to my knees in the hallway as he delivered the very unexpected news. Even though my immediate thoughts consisted of anger, desperation, and sadness, an immediate fight or flight response kicked in. I needed to switch into my "mama bear" mentality, and do what I had to for Giovanni.

When times get tough, and life seems like too much to handle, I go back and read these words that I wrote that night...

"It is amazing how quickly life can become complicated by a few small words, leaving one to wonder why bad things always seem to happen. In times that we question life’s fairness, it is important to keep things in perspective. While we may not understand the immediate reason why things happen in life, there is always a bigger, greater reason, far beyond our comprehension. As difficult as it may be to understand things now, we must remember that one day it will become clear to us, and all the pieces of life’s puzzle will come together and make sense".

While things may not be as clear that I had hoped, and so much is still unknown about his future, I can only hope that the fight I have fought so far has had a positive impact. I pray that he will grow up happy, and have all the opportunities in life that he deserves.

Heads Up

After two and a half weeks of horrible sleep due to a sudden fear of monsters and ghosts, we have finally found a solution. I picked this little gem up for less than $10 at a local toy store. Tonight was his first night using it, and so far so good!

I also wanted to post a quick update about some things going on with Giovanni...

Over the past few weeks, we have seen a reemergence of his "typical" seizures. These are the ones where he suddenly zones out, his eyes fixate downward and to the right, and he incoherently babbles. Last week, after witnessing two in one morning, we called our local neurologist and got an appointment for this week. He has also been having several staring spells a day, in which he is unresponsive during.

At the appointment, in addition to his neurologist, there were also three residents in the room. He took a liking to one of the female residents, and started showing interest in the Minion on her stethoscope. All of a sudden she started snapping at him and said several times "he's having an episode, he's having an episode". Sure enough, Giovanni was blankly staring off into space, not responding to verbal or physical stimuli.

The end result was a medication increase and an ambulatory EEG, which they will do at home. Ugh!

He is officially too cool for baths anymore. He insists that only babies take baths, and he is a "big boy". My baby is growing up so fast!!

CPSE Meeting

Today, Mr. G had his meeting through CPSE (Committee on Preschool Special Education), to determine what services he will receive through the school district once he starts preschool in the fall, as he will be transitioning out of the Early Intervention program. Going I to this meeting, I wasn't sure what to expect. EI services are strictly based on development, where CPSE services are based on a child's ability to function in a classroom setting as well as development. Overall, the eligibility criteria for CPSE is much stricter than EI.

Our school district has decided that Giovanni will receive Physical Therapy once a week, Occupational Therapy twice a week, and Special Ed services three times a week for 3 hours total. We are not sure what is going to happen with Speech Therapy yet, as they are not sure if they can provide him with what he needs. Giovanni's issues are more oral motor skills and feeding, so we need may need to hire a private therapist for that.

Overall I think we made at well, and I feel that Giovanni will continue to get the services that he needs to thrive.

He is such a cute little booger!!

Can a picture really change the world? It can, and I will tell you how.

Just over a year ago, I established the Cortical Malformation and Cephalic Disorder (CMCD) Foundation, after finding myself alone and with little information after receiving my son’s diagnoses. We went through a whole year of being told that our son’s nervous system was just underdeveloped and that he would be fine, only to be told a week before he turned one that he had two rare neurological conditions, periventricular heterotopia and porencephaly.

As time went on, we began to see the effects of these two neurological conditions. He developed seizures, his speech wasn’t developing, he had limited use of his left side from a stroke, he needed AFOs in order to walk…and the list goes on. It was at this time that the lack of opportunities for children with special needs started to become apparent. Before having Giovanni, I guess I had always assumed that these children were provided with the same opportunities as their typically developing peers because federal regulations were in place to make sure that they did. Boy was I wrong!

In the beginning, we did our best to live within the confines of what was accessible to us. Giovanni didn’t have the opportunity to participate in many of the things that other children his age did, but my husband and I did our best to supplement these activities with things that he could do. It wasn’t until one summer afternoon, when we went to our local playground for the first time ever, that reality hit. I felt my heart drop like a rock. My son wanted nothing more than to interact with the other children on the playground. He just couldn’t. He wasn’t able to climb over the barrier that held the woodchips in place; he didn’t want to walk around the woodchips, even after we lifted him over the barrier, as his shoes were filling with wood splinters as he shuffled on his toes; he was a bystander because he had to be. Even after being carried to one of the play structures, the lowest platform was too high for him to lift his leg up onto. My son did not have the opportunity to play on this playground; the playground in his neighborhood.

This whole experience is what empowered me to become the catalyst for change. This past January, our foundation partnered with our local municipality to bring the first inclusive playground to the area. This playground will not only meet the Americans with Disabilities Act (ADA) standards, it will go above and beyond to ensure that every child, of any ability, has the opportunity play. The ADA only requires that playgrounds provide ground level access to 50% of the play elements. How does allowing a child access to only 50% of a playground establish a socially-inclusive environment for all children? Simply getting a child with limited mobility onto the playground doesn’t necessarily enhance their play experience. It also does not take into consideration children with sensory deficits and other developmental issues. In addition to ensuring access, we must ensure inclusion. Our children deserve more than the minimum standards when it comes to playground inclusion and accessibility.   

I am not going to lie. It isn’t easy trying to get people to contribute to a cause when they don’t even view it as a problem. One woman said to me “I don’t have a disabled child,” and I told her that neither did I three years ago. I also explained to her what an inclusive playground was. She had no idea. Unfortunately, not a lot of people do. This is where you can help. We need to raise awareness and educate those in our communities about the inequalities that still exist for children with special needs. If we do not educate them, how can we ever expect things to change? I am challenging each and every one of you to share this photo on Facebook, asking your friends and family to do the same. Not only are we going to prove that anyone can create change, we are going to start breaking down the barriers for our children. If we can just get one person to change the way they think, we have been successful!  

Silver Lining

I have to be honest for a moment. This project has consumed my entire life for the past 6 months, and I am exhausted both physically and emotionally...and we still have a long way to go. While passion can be the greatest motivator, I think that it can also be our worst enemy. I was sitting at my computer last evening, wondering if this project is truly going to have impact; not only in my community, but on a larger scale as well. Don't get me wrong, this will be a great opportunity where I live, but I am truly dedicated to improving the lives of ALL children with disabilities through outreach and education. I know that there are so many other parents out there who have been thrown into the world of "special needs parenting," struggling to keep their head above the water. Parents, like myself, who have watched their child struggle; who's heart broke when they first realized that their child couldn't do what other children could; who worried about what the future would be like for their child. How was this small scale project going to make a difference in the world??

Then I received this message.

"You don't know me, but as I was laying in bed tonight I happened across your article "To the woman who questioned funding for an inclusive playground". As I started reading, I must admit that I thought this was going to be someone being overly sensitive about something or other and a poor me story, not sure why I kept reading but am glad I did. Your short article has opened my eyes. Particularly in the way you address the perspective of the rest of the population should have in regards to children with disabilities.

As I read, I did, as you wrote, try to put myself in your shoes. Not that I can entirely relate, but it broke my heart thinking about it. I see now, that I started reading your article with a callused, jaded, selfish, and cynical perspective. For that, I was wrong and am sorry. You completely have changed my perspective of this particular issue.

I actually climbed back out of bed to get my computer to type this. I just wanted you to know that you are making a difference. We need people like you, to reach people like me in this world. Without reading this, it is doubtful I would have ever realized this is an issue. Thank you for fighting, writing, and working to change things for the better".

CPSE Eval: Part 1

Today was a very exhausting day for Giovanni! It was the first part of his CPSE (Committee on Preschool Special Education) evaluation. Today he underwent over two hours of psychological and speech-language testing. About 45 minutes into it, he fell asleep in his chair. It was actually pretty funny! After a 20 minute catnap, and was able to finish out all of the tasks...but of course not without a bit of an attitude!

Overall, he did fairly well. He scored well on the cognitive portion, but only in the 4th percentile for adaptive. On paper, his language looked amazing, however, they said he didn't have the level of spontaneous verbalizations they were hoping for. They are going to observe him in his developmental group next week to see how he functions in more of a social/learning setting.

Next week is part two of the testing, where he will be evaluated by both PT and OT. We should be hearing something soon about our meeting with the school district to determine what services he will receive.


I wanted to post a quick update on Giovanni, as so much of my focus lately has been on this inclusive playground project.

The last week and a half have been a bit rough. Giovanni has been struggling a bit more than usual with balance and coordination. He has been falling quite frequently, for no particular reason. Last Tuesday, he was working with his OT on barrel walking, when his little arms gave out and he smashed his mouth on the floor. He cut his lip pretty good, but it wasn't anything that a little cuddling and a freeze pop couldn't take care of. He is also randomly falling as he walks; sometime he falls flat on his face, other times he is able to catch himself on his hands and knees. Last week he ran a high fever for a couple of days, so maybe that is contributing to his clumsiness.

On a positive note (barely) we were informed during a doctor's visit last week, that he gained a whole ounce (note the sarcasm). But seriously, considering his was diagnosed as "failure to thrive" for the entire first year of his life, we will take it! At least he isn't losing weight! I love my skinny boy!



Because eating goldfish at midnight is completely acceptable. Night number two of a fever and no sleep.

One of Those Nights

It is after nights like these that I wish I could be a stay-at-home mom. Giovanni started running a fever tonight, that wasn't responding to Motrin or Tylenol. I called the pediatrician and she had us increase the dosing a little based on his weight. His temped topped out near 104, but finally broke about 30 minutes ago. He is now in his crib playing with his cars, and I am hoping to get some sleep before I have to get up for work. 6am will be here before I know it. Good night!