Empowerment at Every Turn

Empowerment at Every Turn

The following is a blog post I was asked to write for GiGi’s Playhouse. Networking with other parents at GiGi’s Playhouse has helped empower me to be a better mom and advocate for my son. I encourage everybody reading this blog to find his/her sources of empowerment and utilize them to fill your heart with the confidence you need to be the best parent/grandparent/sibling for your loved one. We are all enough! Become empowered and advocate on!

I remember when my son was a few weeks old and I was in the process of making phone calls to start early intervention, scheduling extra doctor’s visits and researching everything I could about Down syndrome.  I was a first time mom, overwhelmed and at an emotional low. I remember saying to my husband, in tears, “I don’t know if I can do this.” I knew I could love our son (because I did; more than anything, I loved him from the moment he was born) but I didn’t feel I was adequate as a parent or person to take on the challenges and learn what I needed to know in order to help him. I did not think I was enough for this precious gift we had been given. 

Nancy Gianni’s mission and vision 14 years ago when she started the first GiGi’s Playhouse, was simple but also revolutionary. It was the idea that families could be the best resources for other families navigating similar journeys and from that networking parents would become empowered to be and do the best for their child. All of the work that happens at GiGi’s programs leads to achievement which in turn changes outdated perceptions within the community, and thereby, also empowers with the community with knowledge leading to more inclusion and acceptance. At GiGi’s Playhouse, individuals attend purposeful programs where they can practice the skills they need to excel in their classrooms, jobs and the community. They and their parents become empowered and it spreads to the community.  At every turn, there is empowerment happening.

For families that get the diagnosis of Trisomy 21 in the all too common grim way either prenatally or at birth, having a place that offers a warm welcome of congratulations, volunteers gooing over your baby, and photos of individuals with Down syndrome showcased and celebrated, GiGi’s Playhouse is essential. With one word, “Congratulations,” the magic of empowerment begins for families of newborns, many of whom are having their first interaction with the Down syndrome community when they walk through the doors at GiGi’s Playhouse. Taking that first step into the Down syndrome community is emotional but I have seen just one hour at GiGi’s change parents’ perspective of the journey they are on. Now that’s empowering!

I don’t think my experience of feeling like I wasn’t enough for my one month old baby is unique and that is why empowerment is so important. And the empowerment at GiGi’s Playhouse does not just happen for parents of newborns. Raising my five year old son, I am constantly empowered by the other parents I network. The other parents, my friends, are constantly empowering me to be the best mom I can. We work as a team to help, comfort and celebrate each other and our kids. I always leave my interactions with these parents with a positive perspective and a feeling that I can do this; I can be the best mom for my son. I’m empowered to face the next challenge and advocate for my son.

In addition to my own experience, I have been fortunate to see so many kids, teenagers and adults become empowered to “have a voice,” and share it, become more independent and know that they can achieve their dreams.  The increased self-confidence that happens at every program at GiGi’s is a shining example of empowerment at work.  GiGi’s is a place to learn and grow. It is a safe place for the participants to try new things, to succeed and to keep trying until they achieve!  Empowerment and achievement go hand-in-hand; GiGi’s offers a place for both to happen.

Thank you, Nancy Gianni, for your vision and belief that our children should be celebrated and are capable of achievement. Empowerment is the single greatest tool for any parent, advocate or individual with Down syndrome and it is provided daily at GiGi’s Playhouses.

GiGi’s Playhouse is a network of Down Syndrome Achievement Centers located throughout the country. (and one location in Mexico) To learn more about the free programs offered and to find a location near you, check www.gigisplayhouse.org.

 

 

It’s a Marathon, Not a Sprint

As I came around the final turn, 26 miles down .2 to go, I saw the finish line of the Boston Marathon and I started to get goosebumps.  The noise of the crowd was deafening but in that final moment I couldn’t hear anything. I had tunnel vision and the finish line where one of my biggest accomplishments was about to happen. Back in my twenties, running was my passion. I would wake up at 4:30am every morning and run 10 miles on my treadmill before work. On weekends, I would do my long runs of 18-22 miles.  One year, I did so much running that 80 mile weeks became the norm for me and something that I would without exception accomplish each week. The thing about running marathons is that 99% of the work isn’t done in front of a group of cheering fans on a stage like the Boston Marathon. The work is done day-in and day-out before the sun rises and after it sets. It is done while nobody is watching, without recognition, on days when I just wanted to sleep in but knew that I couldn’t because I would be letting myself down. Much of the same can be said for parenting a child with Down syndrome, the big stage being the dreaded IEP meeting.

“I am going to frame this IEP. This is the most proud I have been since finishing the Boston Marathon!” I exclaimed to my husband the day we got the final copy Jackson’s kindergarten IEP. With marathons, runners can’t show up to the start line without the proper preparation, hard work and dedication. Likewise, we didn’t start prepping for our IEP meeting a couple of days before. We started the process of getting our son full-inclusion at the fall parent teacher conference, 6 months before his IEP meeting.

I remember well the formal start to our process for full inclusion; it was our fall parent teacher conference. His preschool teacher told us how well he was doing and how transitions and academics were his strengths (YES! transitions and academics! He is breaking down outdated perceptions everyday) with happy tears in my eyes, I asked what he struggled with. The teacher didn’t have an answer and kept the conversation rainbows and butterflies.  I knew she didn’t understand where I was coming from or why I was asking the question.  So I tried again, this time more direct, “We want Jackson to be in a general education classroom at his home school. What can we do to prepare him to do that?”  The smile on her face, as well as the two therapists in the room, turned to a serious expression that matched the new tone in her voice. We had quickly taken a 180 degree turn in this meeting. I don’t remember the details of her response but I do remember her saying, there were a variety of options that the school district offered and the statement that most stuck out in my mind, “Kindergarten isn’t like Kindergarten when we went, today, it is more like first grade.”

My husband and I left the meeting discouraged but I am so glad we had this conversation early because it was the first step to getting us all to the same vision. His school team now knew what we thought was best for Jackson and we knew we had some work ahead of us to get Jackson the placement that he needed to thrive in kindergarten. It is easy to fall back on an “us” vs. “them” mentality in school meetings rather than focusing on how the “team” can work towards the same vision. I know “us” vs. “them” was my initial reaction, but I’m glad I didn’t let those feelings overshadow the work that was needed get to the goal together, as a team. His preschool teacher would become the best advocate for Jackson that we could have ever hoped for but had we not shared our vision with her early she couldn’t have known what we thought was best for him. Like in running, a vision (goal) is essential and guides the day-to-day work/training.

Much like running every single day to prep for a marathon, I worked every day to help Jackson get into the placement he deserved.  Some days I would research education law or kindergarten standards, other days I reached out to other moms that had been on a similar journey and had children who were fully included in a general education classroom.  From each of these moms I learned so much and was encouraged. Those were the days that reminded me of runs where my legs felt light and my pace was quick. Those are the runs and days that are the biggest motivators to get to the coveted finish line in a race or a frame worthy IEP.

But like long runs that wore me down and left me with soreness, there were days that I would cry, because I was emotionally worn down by the challenge ahead of us. I was told it would be insurmountable and we couldn’t do it alone. There were days that I questioned what we were fighting for. Would a slower pace be better for our son? Was this all too much to ask of him? But, I would always go back to knowing in my heart that Jackson can do it, he will do it and it was not only the best option for him, it was the only option for him to thrive and the one that would make him most happy. Everyday, there would be another sign that an inclusive education was best for him.

The hardest situations are those that are out of my control. Every time that I would line up on the start line of a marathon, I would get nervous and hope to just finish.  Regardless of the amount of work I had put in, things can happen.  I could sprain my ankle or get leg cramps so intense I simply couldn’t walk another step and not finish after putting in so much work.  I knew that like marathon running, regardless of the amount of work we put in, there was the chance that we would hear “no” from the school district and there would be nothing that we could do about it.  Despite the challenges ahead of us, I knew we needed to win the little victories and dedicate the time and work required to cross that finish line. I was passionate and willing to work hard in order for my son to have the opportunity to excel in kindergarten.

Parenting a child with special needs, much like a marathon, takes doing the little things, done day-in and day-out to get to the finish line.  Like the countless runs done without an audience, nobody sees the work that parents do with their child at home, on weekends when we just want to have fun but know there has to be some therapy in every day. Nobody is watching during the late night hours when research on education law takes place.  People that have never traveled the journey can’t understand the overwhelming amount of responsibility a parent feels for their child’s quality of life.  Successful marathons like IEPs worth framing don’t happen overnight. These grand achievements are the result of hours and hours and hours of hard work and dedication to a vision that only you can see. These achievements require a vision that others may not share and an unwavering (ok, so there is going to be some wavering from time to time) belief it will happen. I have experienced in running as well as parenting, there are doubters and sometimes that doubter is me BUT, I know if I keep my eye on the prize and keep running through those moments, I will cross that finish line.

We did, ultimately, receive a placement and IEP that pretty much matched the ideal scenario we had mapped out in our minds thanks in large part to his preschool teacher who became an advocate for Jackson.  Although I have compared this placement and IEP to finishing the Boston Marathon, I know that this is merely the beginning of our journey and is just day one of training for another marathon. We will continue to put in the work every day knowing that there will be days, like with some runs, just finishing will be enough. We look forward to watching Jackson achieve his goals and make friends in an inclusive setting that will offer him the best opportunity to be his personal best.

 

3…2…1 Let the Journey Begin

Kindergarten Round-up

My mind was a constant flow of worry, my heart overflowing with hope, excitement and pride. Tears were intent on filling my eyes but I battled to hold it together. As I walked through each classroom, I imagined my son sitting at one of the small desks. On the outside, I was just like all the other parents, here touring kindergarten classrooms and meeting the teachers but on the inside, I felt like an outsider that snuck into an event that I didn’t yet officially and may never belong at. I took a leap of faith attending because in reality I was looking at classrooms my son may never even be a part of at a school he may not go to. As the emotions inside of me battled it out, I overheard a parent ask, “Can we request that friends are in the same class?” I stopped immediately and looked at the parent who had asked the seemingly innocent question to one of the teachers. It must be hard that your biggest concern is that your child will have their friends in their class. I thought to myself sarcastically. It is in these moments that I find it difficult to relate to parents of typically developing children. They can’t understand how lucky they are to know their son/daughter will be included in a classroom at his/her home school because, of course, they would go to the school in their neighborhood. They can’t know what it is like to do hours and hours of research on education law, to work your hardest to change outdated perceptions or to challenge the placement that usually goes with my son’s diagnosis all to get him into any classroom at that school, with friends or without. They just can’t possibly understand.

 

About 321 Inclusion

This blog is my place to express my feelings and share my family’s experiences related to inclusion. I hope it will foster a community where like-minded, positive parents on a similar journey can connect with other parents that just “get it.”  I believe parents of children with Down syndrome belong to an elite club that only us “lucky few” can understand and appreciate; a stark contrast to the feeling of being an outsider among other parents. We need each other for support and encouragement. I am thankful for the special friendships I have developed as a result of being one of the “lucky few” parents and I hope this blog will foster connections among the readers.

We look forward to sharing our journey of inclusion for our bright, funny, expressive son who happens to have Down syndrome. I am proud to say that he will be entering kindergarten this fall at his home school in a general education classroom! I am by no means an expert on inclusion but I hope to provide a parent’s perspective and share the successes and challenges in a way others can relate to. Having benefited greatly from the power of parent networking, I hope this blog will provide you with ideas or simply a  place to come for reassurance and to find other parents are on a similar journey.  So here we go, 3…2…1…the official start to our family’s inclusion journey is just around the corner. Kindergarten: here comes Jackson.