For our son’s first birthday he got a gift certificate for one of those toddler gyms. We ultimately used the gift certificate for the music class they offered because he loves music, but we also tried one of the mommy-and-me “gym” sessions. When we entered, I remember hearing a variety of mom voices, “I know you can do it, climb up.” “Ella, you just did this yesterday, you can do it.” “My son started walking when he was 10 months old, how about your son?”
I think we were both a bit overwhelmed by the slightly chaotic ambiance. My son wasn’t interested in climbing on anything or even crawling across the mat, a skill he had just learned. He was content to just watch. I encouraged him to try the fun things the place had to offer but he wasn’t interested so I backed off, put him on my lap and he simply soaked in his surroundings. I’ve learned that watching and listening is one of the ways he learns best and he was gaining a lot from just being there. This experience is a moment that would later be one of clarity for me; this was the child I needed. He teaches me to stop and enjoy the journey rather than trying to rush to the finish line.
I know, without a doubt, I would have been one of those parents that are constantly seeking the next milestone before enjoying the accomplishment of the previous. The ones that want to have the kid that can climb the highest, walk early, can master anything immediately. I would have turned parenting into a competition rather than enjoying our individual journey. I needed a break from my self-imposed pressure to pursue perfection. I needed a fresh perspective and a greater appreciation for the little joys in life. That is exactly what I got when our eldest son was born with Down syndrome. My perspective on what is truly important and meaningful has changed drastically. My definition of success had relied heavily on evaluations and standards. I didn’t know my own measure of joy, it was all dependent on what society deemed most valuable. Now I understand happiness comes from a deep appreciation of all the “little things” that make life special, genuine and full of purpose. My son taught me more in his life than I had learned in all the previous years of mine. He continues to teach me to celebrate every little step along the way and to soak in all the fun and uniqueness of our journey.
From my first year in school, I was the kid in the class that loved school and worked really hard to achieve all “A’s.” My intense desire to conform to society’s standards of achievement continued through high school, into college and adulthood as I turned to marathon running as my outlet for challenging myself to achieve. But the pressure I placed on myself caused much stress and a life filled with more worry than bliss, more pressure than happiness.
Motherhood, no doubt would have been a continuation of my desires to meet the standards and have a child that was right on track, or better yet, ahead of the developmental milestones. But there I sat at a mommy-and-me class, with my son on my lap just soaking it all in with him. WOW! What a huge, albeit subtle, accomplishment. He showed me that he didn’t have anything to prove to this audience of his peers or their moms. He would do it all on his own time and he would do it for himself-not to meet developmental milestones. In that moment, my one-year-old son had already made me a more complete, peaceful person who enjoyed just sitting, watching and listening. Sitting there silent and still at a mommy-and-me class that was filled with movement and chatter made me feel a bit anxious and off balance but also oddly at peace. At the time, I didn’t realize the significance of that moment but looking back, it was pivotal. There are still plenty of moments that I feel uneasy and anxious in social situations because our son does things his way and that way isn’t always what’s expected nor does it match up with the developmental charts but he is filled from head-to-toe with a charisma and positive energy that is unmatched and I adore that about him.
He makes me so proud because he leads a genuine life; he isn’t afraid to show his joy or go at his pace. We celebrate BIG those things in life that might be insignificant to most, including the person I was before I had him. Some times the things most worth celebrating have nothing to do with an achievement at all.
As we prepare for kindergarten, our hope is that he will build friendships and gain more independence. Academics will take a back seat to what truly matters. This former straight “A” student, has learned from my son the importance of the things in life that can’t be measured on a test. Perfect report cards, elite marathon times and a slim frame are fleeting. But, the peace and strength that comes with doing things on one’s own terms and appreciating the things that make life worth living are lasting and bring joy daily. Loving relationships, kindness, and the positive mark a person leaves on the world are the true measures of success. Thanks to my son, I am learning how to be the best version of myself and I will continue to work hard to help him to be his personal best, fully-included, and on his own terms!
Disclaimer: This blog, like my others, is just one parent’s perspective and experience. I don’t claim to be an expert but rather am sharing our family’s experience in hopes of potentially helping others to make their IEP process more positive.
To start: let’s be real, parenting and advocating for a child on an IEP is hard! It is emotional, takes a lot of time, and energy and in return can cause feelings of dread, sadness, and anxiety. There really is no sugar-coating it, it can be downright dreadful, but with the right approach, I believe, IEP meetings can be collaborative and successful for all parties and most importantly the student. Here are some ideas that have worked well for my family, maybe they will work well for you too.
Do the “big picture” prep work and lay out a plan
Sometimes as parents of a child that is delayed, it is easier to only look at the present because too far into the future can be hard to predict but it is important to identify early what you and your child want in adulthood so you can always be working towards those goals in all aspects of his/her life. Of course, these goals may change, but for now, understanding what makes your child happiest and create some goals. For example, if you identify that your child is happiest when he/she accomplishes things on his/her own, perhaps a goal would be for the child to live independently or have a job when they are an adult. In order for that to happen, prepare in the way that is age appropriate at every stage of their lives. For our family, full inclusion in a general education classroom is going to give our son age appropriate, real life experience and increase his self-confidence so he can be independent. Secondly, research school districts early and find one that best meets the needs of your child. Some districts are exceptional at offering separate special education resources and others may be better at running inclusive classrooms. Know what your child needs and work your hardest to get into the district that best meets their needs. I spoke with parents early and often regarding school districts and from that information, we determined the district we wanted for our son and made many sacrifices and planned for years in advance in order to get him into a school we thought was best for him.
You know what is best for your child
Parents know their child best. Take confidence in that and use it to your advantage. An IEP meeting is a good time to highlight your child’s strengths (even brag a little) and work toward solutions to help them with their weaker areas. Never forget that the IEP is a collaborative process and YOU are a part of the team, not a spectator on the side lines, you are IN the game! Well before an IEP meeting, think about what is best for your child in the coming year and communicate your expectations to your child’s team. This is a general vision of how their school day (level of inclusion if any) will look like, not necessarily specific IEP goals. Once you know what is best for your child for the upcoming year, share your vision with the team so everybody is working towards the same goal. We did this at the beginning of the school year at parent teacher conferences and then again in a letter to the IEP team about two weeks before the IEP meeting. At parent teacher conferences our conversation was general; we knew full inclusion in a general education classroom was best for him. In our letter to the IEP team, we were more specific and gave some examples of IEP goals.
All communication with the team is important because that is how collaboration happens. Don’t limit communication to IEP meetings.
Drop the “us” vs. “them” mentality
I know there are some of you out there rolling your eyes at this one. I will admit, this can be a challenging perspective to have especially if the initial reaction you get from the school team to what you want for your child is less than full agreement with high-fives or you have had a bad experience that has put you on the defensive. Trust me, there were a couple of moments when I went into full mama bear mode (at home) and wanted to “put the smack down on.” BUT, rather than building a stone wall to protect ourselves, we worked towards building a bridge with the team. Creating a meaningful IEP is a collaborative process, not a battle that one side wins and the other loses. Keep the focus on the end goal, creating an education plan for your child that will ensure they have the greatest success in the classroom and beyond. Relationships with the members of the IEP team are important. Don’t look at it as sucking up to somebody just to get what you want because first, that isn’t a relationship and second, I doubt it will work. Being genuinely interested in contributing and being a part of the team is the key.
Gratitude goes a long way
We all know it: parenting is hard and sometimes our child is having a bad day, are unwilling to do anything and honestly just isn’t that fun to be around. Don’t forget that your child’s team also experiences those types of days with your child that isn’t all rainbows and butterflies. Be grateful for quality teachers that work with your child to help them to reach their IEP goals. When you look at the IEP process as a collaborative team working together to achieve the best for your child, you are much more likely to seek out opportunities to be grateful for everything the team is doing for your child rather than thinking they are working against you. Share your gratitude; write thank you notes, emails and say thank you every day at pickup. Looking at this process from the view point of the other members of the team and understanding the time and work they put in, it becomes easy to be grateful for what they are contributing to your child’s education and more importantly his/her quality of life.
Do your homework
When you are talking about your child’s quality of life and future (short term and long-term) don’t overlook the importance of understanding the laws that govern special education. This is where a balance comes into play. Yes, be kind, show gratitude, and take a team approach, BUT, also let the team know that you know what your child has a legal right to at school. The more knowledgeable a parent is of the laws governing special education, the more seriously they are going to be taken. Educate yourself so you will be taken seriously and if needed you can remind the team of their legal obligation. Here are some key legislation and terminology that I think is most important for parents to have at a minimum, a basic understanding of when advocating for their child. The “biggie” is the IDEA (Individuals with Disabilities Education Act 2004) which states: “Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”
And as a part of IDEA, “Least restrictive environment (LRA)” which states that a child should be placed in the least restrictive environment as the first option and only if their disability prohibits them from being in that environment will they be moved.
At a local level, more specific to your child, research the state standards for the grade level they are going into. I used our state’s standards for kindergarten to guide the suggestions for IEP goals. It just made sense to me that there would be less push-back if I showed an understanding of what would be required of a typical student and picked out the pieces of each standard that I knew our son could accomplish or would be most important to him gaining confidence and independence. We were asking for him to be a part of a general education classroom, I wanted to emphasize that we expected him to learn the same material as the other students but that the way he accomplished it may need be modified to meet his needs.
Go on the school website and each teacher’s individual page to become knowledgeable about what a typical day looks like in his/her classroom. This can again help to guide IEP goals and when you reference information from the school website in an IEP meeting it increases your credibility in the eyes of the team at the school and may even score you some brownie points (and what parent couldn’t use brownie points in an IEP meeting!) To take it a step further you can ask for a meeting with one of the teachers to learn more about the flow of the day and expectations. Because I found some web pages to reference I did not feel the need to request an additional meeting and time from the principal or teachers at the school.
Lead with kindness
We were fortunate that our IEP meeting was taking place at our son’s home school and we went in knowing he would receive inclusion so we were genuinely grateful just to be there. I started the meeting by sharing how grateful my husband and I were to be there and how much we appreciated the team meeting to discuss what was best for our son. I also made it very apparent that we understood that we were a part of the team and how we were eager to collaborate with the rest of the team. I can guarantee there will be a time during the meeting that the school team and parents don’t agree. Rather than going on the defensive and jumping to the conclusion “they don’t want what is best for my child,” take it as an opportunity to reach a mutually agreeable decision in a respectful and kind manner. Again, I know that can be a challenge especially if the team isn’t leading with kindness themselves but changing the atmosphere in the room with your kindness can change the course of the meeting. Genuine kindness and appreciation go a long way and with any luck, your kindness and appreciation will be reciprocated and the whole meeting will be positive.
You got this!
Never forget creating an IEP is a collaborative process and YOU are an important part of the team, not a spectator just observing. You do have control over the outcome. Know what you want for your child (short term and long term), educate yourself on the laws governing special education, lead with kindness and be a part of the team collaborating to create an individualized education plan that will benefit your child. With any luck, you will have a positive IEP meeting which will generate an IEP that will help your child to reach their fullest potential. You got this!
IDEA – Building The Legacy of IDEA 2004. (2017). Idea.ed.gov. Retrieved 12 July 2017, from http://idea.ed.gov/
The first game of the NFL season was one day after Jackson was born. My husband had gone home for a quick shower leaving Jackson and me alone for the first time. Still overwhelmed, concerned about his health issues, (minor but at the time felt like a dark cloud hanging over us that at any time could become a huge thunderstorm) and trying to understand parenthood and our new journey, I fell back what was comfortable to me, football Sunday. I turned on the Cardinals’ game on in the hospital room and held Jackson explaining it to him. Arizona Cardinals games had become my families time together. We would attend the home games and watch the away games together. At only one day old, Jackson would become a part of this tradition and watch the first game of the season with me. Soon after that day, he would have a pint-sized Cardinals jersey, beanie, and matching socks; he was then and still is the cutest fan ever!
Fast forward a bit over a year, decked out in his full Cardinals ensemble, he attended his first football game and he loved it! Amazingly, he sat through the whole game and watched the field the whole time. As he has grown, his love of football has also grown and he has become a fan. He still loves going to the games and stays fully engaged the whole time. He loves yelling “third down,” cheering, and eating popcorn. And, it was football games on TV that would be the best motivator to get him to stand on his own. Initially, I was a bit nervous to take him because he was so young and because I always get a bit anxious in situations with crowds. It’s basic math, the more people (mixed with alcohol) the greater the chance of one ignorant person saying something stupid and tearing my heart out of my chest and likely, resulting in my whole family being escorted out of the stadium by security. But at the games he is just one of the Cardinals’ fans, yelling and cheering. Ok, so he is the cutest fan there and he has gained some fans of his own. Walking on the concourse with him is a bit like escorting a celebrity. He gets a ton of smiles, some high-fives and several “look how cute he is.”
Although the pursuit of inclusion discussed in this blog focusses primarily on school inclusion, inclusion is a way of life, not a school placement. School inclusion is just one piece of the puzzle and won’t work in isolation from other aspects of life. Inclusion at home and in the community is essential. Parents know their child best and should be able to decide how much their child will be included with their typically developing peers at school. For our family, we believe including Jackson in all aspects of life now is the precursor to him engaging with his community in adulthood i.e. having a job, living independently and/or attending college, whatever makes our son most happy. We want him to grow up in the same world he will live in for the rest of his life. 321 Inclusion celebrates inclusion at all levels: home, school and in the community because all pieces work in conjunction to create a beautiful picture.
Jackson was our first born child so in addition to learning how to parent a child with Down syndrome, we were learning how to be parents in the first place. Because we didn’t have any prior parenting experience, we focused more on getting the parenting part right and less on how to parent a child with Down syndrome. Although we did research on how to help him achieve his personal best, we didn’t treat him differently than we do his younger brother. To us, Jackson wasn’t our son with Down syndrome he was just our son. Parenting him was all we knew about parenthood and for that I am grateful. We took him everywhere and he was fully included in our lives same as any other child would be. Like other parents, we took hundreds of pictures of our baby and he was the center of our universe. The full inclusion way of life easily became how we did things, without thinking about it. From birth, we have treated him the only way we knew how: fully included in all aspects of our lives so when it came time to discuss where he belonged during the school day, it only made sense to us that his school life should match up with his home life and we knew inclusion would be best for him.
Don’t get me wrong, I have had doubts about putting him in a general education classroom…lots of doubts. Even knowing in my heart it is best for him, I still question it. The battle that goes on between my heart and mind is the result of fear. My greatest fear, by far, is that the other kids will make fun of him or not include him. That’s when the thought of him being in a self-contained classroom where all of his classmates would also be delayed sounds pretty darn nice from time-to-time. But the reality is, Jackson lives in the same world as the rest of us and that world, unfortunately, includes a lot of bullies. It is impossible for me to protect him from that (as much as I’d like to live in a bubble or move to an island). So rather than worrying about how I can protect him from the world, I will focus my energy on how to best prepare him for living in it. Like in football, the offensive line can’t protect the quarterback 100% of the time so the quarterback has to work on ways to protect himself so he can stay standing long enough to throw the ball. I will protect Jackson when I can, but more importantly, I will help Jackson gain the skills necessary to thrive in this world on his own. At each step of the way, I will cheer as loudly for him as he cheers at football games. He is the biggest Arizona Cardinals fan and I am his biggest fan!
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.
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 so happy with 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 our son’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 of 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 every day) 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 our son 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 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.
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 our son and we knew we had some work ahead of us to get him 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. An “us” vs. “them” approach 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 our son, 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 our son 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 “perfect” 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 he 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.
For me, 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 sometimes 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 our son. 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.