Weekly Wind-Up: August 26, 2012

This is the first in what I am *hoping* will be my first weekly article. These are little things that have popped in our life and in the media that caught my attention. Please feel free to comment and discuss!

 

                                                                             1.

This was the first week of school for both the hubby and Matt. The first day was weird not having him home with me, but I found ways to fill all the free time by cleaning and doing a ton of laundry. The rest of the week ended up being harder because I missed him so much and I will admit I left the school teary-eyed. All in all, his teachers said that he had a great week, that he barely cried, and the biggest shock of all--he's become a napper!

 

                                                                             2.

 Florida teacher Jaclyn Ockerman, who has been accused of slapping, pinching and forcibly pulling the faces of her kindergarten students with Autism Spectrum Disorder. Lake County School Superintendent Susan Moxley recommended her termination to the school board back in July. Ms. Ockerman is appealing her termination next month and has been pulled from the classroom and reassigned to administrative duties until her case is resolved.

 

                                                                              3.

Toys 'R'Us has released their 2012 edition of Guide for Differently-Abled Kids in stores this week. This year's edition contains a list of 100 different toys which have been evaluated and recommended by the National Lekotek Center, an center devoted to children with disabilities. Maybe if a certain little someone continues to be a good boy, Santa might pick one of these up to get some ideas for Christmas.

 

                                                                              4.

 We are three days away from the start of the 2012 London Paralympic Games! The games will be starting on August 29th and will go through September 9th, and will showcase the talents of 4,200 athletes. Unlike the 2012 London Olympics, NBC plans to show only 5 1/2 hours of programming in the United States,with the majority of coverage not showing until the competition is over. Daily highlight segments will be featured on the U.S. Paralympic team's YouTube channel.

 

                                                                              5.

I am going to be fulfilling a long-time goal of participating in the 2013 Polar Plunge at Aquatica for Special Olympics. I have been wanting to get involved with Special Olympics for many years from when my younger cousin began competing, and now being the parent of a child with special needs I am even more  In order to plunge I had to raise a $100, and as of today, I have now raised $170! So I've set a new goal of $300 and I'm hoping to reach and surpass it.  Can't wait to be freezin' for a reason!

 

 

Hope you all had a great week last week and are powered up and excited for the week to come!



First Day of School-- A Big Day for a Little Guy

Today was the kiddo's first real day of school at UCP. He went to the summer program two days a  week for 3 hours a day, but this is a whole new world for us. As of today he will be going to the toddler program for 6 hours a day, four days a week, all at the tender age of 2 years old.

I have been with Matt every day of his life, never spending more than a couple hours away for any reason. With his epilepsy and other health issues, I don't just leave him with anyone either. My in-laws are the only ones who have ever cared for him other than Joe and I until now. This is a big adjustment for me, learning to let go and trust others with my precious boy. Also, because for the first time in two years, I have no idea what to do with myself when I am not caring for him.

He was so excited when he got to his classroom, he saw the other kids running around and playing with toys while their parents were waiting to speak with the teacher. I emptied his backpack and filled his cubby, then sat him in his Rifton chair and kissed him goodbye. I knew that he wouldn't be staying the full class time today because we had a standing speech and occupational therapy appointment, but it was so hard leaving him.

I get a lot of questions from other parents as to why I have him in school so young. Most tell me, "Good for you! You need a break!" That isn't why we chose this path for him. We wanted Matt to learn life skills,to get supplemental speech and occupational therapies (hopefully physical therapy too at some point), and to be with other kids who are like him.

I will miss my little monkey, but I am so excited to see the progress to come! And hopefully this will mean that I will have more time to work more here :)

Creating My Village

When I first found out I was pregnant, I was beyond excited. I was elated...I was nauseous... I was scared out of my mind. We had been trying to have a baby for about 4 years, and thanks to Polycystic Ovarian Syndrome (PCOS) we ended up with a negative pregnancy tests month after month. I had honestly thought that after that long we would never get pregnant. I was so scared of doing anything that might jeopardize this little blessing.

Within a day of the positive test, I was seeking out every single piece of pregnancy info I could lay my hands on, first being the Holy Grail of pregnancy books: What to Expect When You're Expecting.  I quizzed my mother, my grandmothers, my mother-in-law, our sisters, and basically anyone who possessed a uterus what their pregnancies were like. Armed with all their wisdom and experience, I felt like there was hope that I might not screw up my kid after all.

Five weeks into baby bliss, everything got turned on it's head and our little man began having seizures while my in-laws, Matt and I were in New Jersey visiting an ill relative.  To say that I was scared out of my mind would be putting it very mildly. Joe flew up as soon as he could to be with us and we spent the following week in a hazy hell of spinal taps, EEGs, and finally getting diagnosed with Epilepsy before we were allowed to bring him home. We had no idea just how much our lives were going to change.

All around me, my friends with babies had typical questions and concerns about their little ones. I had no one to compare our experiences to or ask questions about medications and therapies. As a result of our unexpected detour into Special Needs World and a hearty dose of undiagnosed Post-Partum Depression, I withdrew into myself and a few friends and family members dropped off our grid. I also suspect that more than a few of them were tired of hearing me complain about insurances and therapies. In their place we gained new specialists and therapists. I would see other moms bring their kids in for their appointments and we would smile and make chit chat, but never anything significant. And while we have tons of kids in both of our families, none of them have had issues quite like Matt's, so it was difficult for them to understand what was going on at times. I had never felt so alone in my life.

Shortly before Matt's second birthday we ran into a family we had met when I was pregnant . This time we had Matt with us and they realized that we had something very important in common: our kids had special needs. Their boys were older than Matt, but they had already been through a lot of things we were just now learning about. We bonded very quickly, trading diagnoses back and forth and finding out we had specialists and a physical therapist in common. The more we talked it felt like we felt like we had known them for years. I especially bonded with the boys' mom, Karen. Within ten minutes we had each other's contact information and Facebook information. I am so thankful we met them and that it brought me out of my cocoon.

Soon, I was like a special needs heat-seeking missle. I approached a mom in Target when I saw their kid was in a special stroller and start talking to her. That awkward exchange led to Matt's first play date. We met a family at SeaWorld and asked them about the model of wheelchair their son was using when we knew that wheels were in Matt's future and that led to another Facebook friendship. Karen introduced me to a group of special needs moms that she has been involved with for years and I jumped right in with them too. These are some of the strongest, most amazing people I have ever had the pleasure of knowing. They are amazing advocates for their children's healthcare and educational needs, they support each other when their kids are in the hospital, when an IEP meeting doesn't go the way it should, and even in the grief process when one of the kids get their angel wings. I know when things go wonky, they are always there to listen and send a virtual hug.

I am thankful to have so many people involved in our life that love us and love our kid. They have been with us and cried and prayed with us through scary times and they're the first to celebrate with us in happy times. I am humbled by the time and generosity they have shown us time and time again. They have become our family, our tribe, and we are more thankful for them than they will ever know.