Quick survey. Do you like talking about your weaknesses? Nobody? How about when other people constantly analyze your every move? Silly question, right? Or worse yet, how about your child’s weaknesses being the topic of conversation at meetings and magnified constantly? Doesn’t sound like something any parent should have to endure, right? Well, any parent that has had their child evaluated for services or been in an IEP meeting can relate. It has always felt like Jackson lives his life under a microscope. At an IEP meeting recently, I was reminded several times about the dreaded microscope that magnifies and distorts. Jackson will never escape his every action and personality trait being over-analyzed and connected to his diagnosis.
Everybody has their strengths and weaknesses but most of us don’t have our weaknesses magnified, brought to the attention of teams of specialists and tracked with data. It’s human nature to focus on our individual strengths while working on our weaknesses behind the scenes; we never lead with our weaknesses. As a parent of a child with Down syndrome, my son’s weaknesses are always discussed. And then there are parts of his personality that are talked about as if they are a weakness but in reality are just part of who he is.
Jackson happens to be very introverted until he feels comfortable. If he did not have Down syndrome, I bet he would be considered shy like I’m sure several kids in his class. Instead, Jackson being shy can be perceived by people that don’t know him, as he can’t talk, he lives in his own world and he isn’t social. None of which are true, by the way.
You might have heard the stereotype that individuals with Down syndrome are always happy. Jackson is a happy boy, but he is not always happy. (Nor are any of the individuals with Down syndrome that I know) He has a full range of emotions that include: frustration, being overwhelmed, and anger. Those emotions are brought on by his environment, stress or tiredness. He, like the rest of us, should be allowed to have a bad minute, hour or day.
Raising a son with Down syndrome feels like a constant tug-of-war. The world focuses on and dissects his weaknesses and we magnify and celebrate his strengths.
Don’t get me wrong, I understand evaluations are necessary and weaknesses must be discussed, but life under the dreaded microscope can be daunting.
One of my favorite quotes is from Alvin Price, “Parents need to fill a child’s bucket of self-esteem so high that the rest of the world can’t poke enough holes to drain it dry.” This is a part of my job as a Mom that I take very seriously. For our kids with Down syndrome, I think it is even more crucial because they are much more susceptible to people and situations that make holes in their buckets.
We know Jackson is delayed, but we choose to focus on all the amazing things he accomplishes. Every day we take advantage of the many opportunities to fill his bucket of self-esteem. We will continue to put his successes under our microscope and focus on those!
In your child’s eyes, you see a world of possibilities, not a diagnosis.
You wish things were easier for your child but,
Wouldn’t change one single thing about them.
You overlook weaknesses and celebrate successes, big and small!
Negative remarks from an IEP meeting replay in your head and rip your heart apart, piece by piece.
You hold back tears as teams of specialist discuss your child’s weaknesses, but refuse to stay silent because,
You are your child’s voice, a passionate advocate, and their biggest cheerleader!
You constantly doubt yourself and the decisions you make for your child but,
You are strong, confident, assertive and refuse nothing less than the best for your child.
You’d do anything to see your child smile,
And wish you could take away all the ignorance in this cruel world.
Your child has made you a more caring, open-minded and accepting person.
You constantly second-guess your words or actions on behalf of your child and
Ask yourself daily, “what more can I do to help my child?”
You want your child to have the high quality of life they deserve so badly it hurts.
You visualize the best case scenario but,
Prepare for the worst possible outcome.
Your heart bursts with joy with every spontaneous hug or kiss.
To your ears, you child’s voice is the sweetest sound in the world and,
You waited longer or are still waiting to hear their first word.
Your child says everything without saying a single word.
You have experienced higher highs and lower lows than other parents.
You know you are one of the lucky few,
and you know that without a doubt that your life is better with your child.
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/
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.
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.