Words of Wisdom For the School Year: A Guest Post by Lauren Ochalek

Tonight marks our daughter's second "Back to School Night." This year, she'll be entering first grade. Some might say that this is where the real school journey begins, as it is technically the "first year" of school, though when you're parenting a child with Down syndrome, your child's educational journey truly begins when they first enter the county's "Infants & Toddlers" program. Regardless, our daughter, Ellie, will begin first grade next Tuesday and she could not be more excited. As the mother of a child with a disability, I would be lying if I said that I wasn't anxious about this new beginning, though, like Ellie, I too am excited to see where this upcoming school year will take her and her confidence in everything always brings me much peace.

Every school year has brought its fair share of new and exciting experiences for our girl, and it has always been humbling to look back and reflect on just how far she's come. After all, this was a baby who doctors feared was incompatible with life.

To see her thriving is the joy of our lives, but I digress. Below are several pearls of wisdom from our family's first six years of walking along Ellie's educational path. While this advice is unique to our lived experiences, we hope that it may help others somewhere along the way.

Collaboration is Key...

We feel as though much of Ellie's educational success can be attributed to not only her intellect, drive, and beautiful disposition, but also the willingness of dedicated educators to see her potential and presume competence. From the very beginning, we have viewed Ellie's team, as we refer to them, as just that...a "team." By Merriam-Webster's definition, a team is "a number of persons associated together in work or activity." In this case, the work at hand is the molding of our daughter into a confident, independent, and well-rounded individual who will someday be on her own (to the fullest extent possible) as a contributing member of society. Regardless of chromosome count, working with educators who see Ellie's worth has made all the difference and, for that, we are forever grateful.

We believe that a part of working as a team is both parties coming to the table and showing their hands, long before the school year begins. As parents, coming to every meeting (be it an IEP meeting or parent-teacher conference) with thoughtful intentions and a vision statement can make all the difference in how the school year, and your child's educational journey in general, progresses. It helps immensely to set solid expectations and the tone for future meetings and communication. Discussing a child's strengths and weaknesses in an open, honest manner gives the team the benefit of understanding how your child best learns so that an individual plan for success can be formulated.


Optimism Along the Journey...
So much of Ellie's educational journey, we believe, can be directly attributed to a positive outlook and willingness to collaborate with educators. Going into a meeting about your child with "guns a-blazing" (as many parents of children with disabilities have been led to believe is necessary) is absolutely not constructive nor helpful to anybody involved. Instead, coming to every meeting with an optimistic, uplifting attitude and a willingness to work together is half the battle. Open lines of reciprocal communication are everything!

While it is critical to always be your child's best advocate, please know that, in general, the majority of educators truly do have your child's best interests at heart. It is time that we, within the disability community, no longer engage in fear-mongering associated with the education system wronging our children; instead we must embrace and support our educators and then, in the event that it is absolutely necessary, remind them of what the law states regarding FAPE and LRE as they relate to IDEA. Kindness and mutual respect make the world go-round and can go a long way in fostering constructive relationships between home and school.

Gratitude and Thanksgiving...
As a family, we are very passionate about the work that our educators do to help our children every step of the way along their educational journey. We always make it a point to emphasize our appreciation for these (too often underappreciated) individuals who dedicate so much of their lives, both in and outside of the classroom, to the betterment of others. Teachers are responsible for helping to shape our future generations - the least we can do as parents is recognize them and show them our gratitude.

Final Thoughts...
We know that Ellie's educational journey may not always be all rainbows and butterflies (we also understand that our experiences may be very different from others), however, with a foundation built on mutual respect between parents and educators, we are certain that we'll always be able to put Ellie first in the collaborative decisions that are made to support her throughout the entirety of her schooling. We have been very fortunate, thus far, to have educators who believe in our girl; educators that consistently set the bar high while presuming Ellie's competence, a bar that Ellie is continually determined to not only reach but exceed. Ellie's journey, as a student who is fully included alongside her typically developing peers, has been the model and definition of positive inclusion in every way. Along with excelling academically, inclusion for Ellie has meant lessons in respect and appropriate behavior, while forming strong, beautiful friendships and positive self-esteem. I know, undoubtedly, that her typical peers have learned much from her also. Inclusion for Ellie and our family has been such a gift.

Our Vision for Ellie...
Below is our vision statement for Ellie and is shared with her educators at every IEP meeting and the beginning of every new school year:

"Ellie will lead a life as independent as possible with whatever supports in place that she may need to succeed. We wish for her to be valued, respected, and included throughout the entirety of her life. We expect that she be treated like any other individual and be held to the highest of standards. We plan on her earning a high school diploma and attending a post-secondary institution to further her education. As an adult, it is our expectation that Ellie will have acquired the ability to work in a field that she desires and earn a livable wage; live independently, if she so chooses; and make a difference in her community, and the lives of those around her.

With this vision in mind, we believe that the very foundation of the life in which Ellie is building will greatly impact her future; therefore, there is much value in the decisions that are made today."

**Ellie is a rising first grader, big sister, incredible daughter, and amazing friend. Ellie enjoys dancing, swimming, and her involvement in Girl Scouts. She is constantly breaking down barriers and proving to the world that she is more alike than different, just by being who she is. The author of this piece is her mother, Lauren. Lauren is a nurse educator turned SAHM who, over the past six years, has worked tirelessly to advocate for Ellie and others within the Ds community as a whole. Lauren has dedicated her time to various local and national Down syndrome organizations throughout the past six years, though her current involvement is focused on the restructuring Down Syndrome Connection of Anne Arundel County, an organization that is very near and dear to her heart.**

Happy 11 Months, Mark!

Happy 11 months, Mark! How this happened, I am not quite sure. It seems like it was just yesterday that you were a figment of my imagination. And now I am watching you crawl on your belly from one corner of the room to a box of toys, and pull every single thing out of the box. You are a little hurricane, my friend. Nothing stands in your way!

The past month has been a busy month for Mark. Mark has nearly perfected the army crawl. And I say nearly perfected because he does not seem to like using his left leg while he is crawling - but that does not seem to slow him down in the least. He has also taken his crawl to the next level, climbing onto one step and over couch cushions. We have also been working hard on early cruising on the couch! If you follow us on social media, you have probably seen some of our videos of Mark hard a work.

We have been busy enjoying our summer too! We took a trip to the National Zoo in D.C. sporting our Make Your MARK shirts with pride in support of Mark and other individuals living with Down syndrome and their families.

Mark and Dad at the National Zoo

We have spent time in the pool with family and friends, and it turns out that Mark is quite the water baby. It is not uncommon for children with Down syndrome to have altered sensory processing which can result in sensory disturbances to various textures that neurotypical children and those without sensory processing disorders do not experience. For a while, Mark appeared to have a dislike of water, such as being in a bath. But, with water play and finding different ways to bathe him, he now loves the bath and also the pool. Maybe one day he will even be a swimmer!

We have also spent time with friends going to the park and picking fruit at an orchard. We even got to go on a carousel and ride on a small train with our friend, Harper, and her mom, Jess.

We are also really excited that Mark is eating table food by himself! And he sure does have an appetite. Pancakes and fruit for breakfast, grilled cheese for lunch, and fish sticks and broccoli at dinner are some of his favorites. He is also drinking from a straw now, which is an important development in his oral motor function. Mark also got his first taste of some yummy treats: Krispy Kreme Doughnuts and fruit sorbet.

And those little teeth keep coming in too. Mark has two teeth, one upper central incisor and one lower central incisor. It is not uncommon for children with Down syndrome to have a delayed eruption pattern, as well as missing or malformed teeth. Dental care is also very important for individuals with Down syndrome, who are at higher risk of periodontal disease.

Phew! It has been quite a busy month. We are really excited to see what this next month holds for Mark, Rachel and our family as we look forward to Mark's FIRST birthday! What a celebration it will be.

Happy 11 months, sweet boy!

We are so grateful to everyone for reading a little bit about our sweet guy. Please check out our Facebook page and follow us on Instagram @makeyourmarkdsawareness for more about Mark, our family, and to learn more about living a life with a little extra 21st chromosome!

Love,

Mommy and Mark

What My Daughter Has Taught Me About Love

We do not talk about Rachel as much as we should, and it is important that we do because Mark's story is as much about him as it is about his big sister. It has been that way from the moment that we learned that we would be welcoming a child with Down syndrome into our family. I feel confident speaking for many other parents of children with Down syndrome when I talk about these things because, as parents, we want what we feel is best for all of our children. So when you hear the words, "your baby has Down syndrome," the flood gates of emotion and preconceived ideas immediately fill your mind. Not only do you ponder what this child's life will be like, but you also consider what effect a special needs sibling may have on your other children's lives.

The list of questions seems unending. How will my other child view her sibling? Will she feel neglected because of any additional attention her sibling requires? Will she resent her sibling with special needs? Will she want to help take care of that sibling in the future if he or she cannot live independently? Understandably, asking oneself these questions is normal, but considering these things did not make me feel very good as a parent because, honestly, I never imagined how fulfilling this journey would be for me as a person, a woman and a mother to both of my children.


I can say, 10 months into Mark's life, that I wish that I had not worried so much about how Rachel would feel about her little brother, because she feels nothing but love for him. Unconditional, unadulterated love. I'm not sure why I expected anything else from this beautiful little soul who tends to him when he cries, tries to make him laugh with her silliness, gives him hugs and kisses just because he is "my Markie."

And it is this love in its truest form - without limits or exceptions for whatever differences there may be - that has pushed me these last few months to do whatever I can to make the world a little more aware, accepting and inclusive for people living with Down syndrome, or any other special needs. Because at the end of the day, we as adults can sometimes learn from our children in the ways that they see the world and see people at face value.  All of the children who interact with Mark, such as his sister and his cousins, they see nothing but a sweet little boy who loves to smile and wants to play. They just love him the way he is, plain and simple.

I know that one day we will have to explain to Rachel that Mark has Down syndrome. I know that our relatives and friends will one day have that conversation with their children too, if they have not already. And that will be one of the most important conversations that we have with our children, because it may have a profound effect on how they will view all other people who seem different from them, who do things a little slower or in a different way, people who may need some assistance doing things.

Mark and his cousin, Joel

Thankfully, there are many people who have walked that road before me whom I call "my village," and I am so grateful for the connections that I have made in our local Down syndrome community because it has calmed so many of my fears about who Rachel will be as a result of her brother's life. Because most of the children who I have met who have a sibling with Down syndrome are, at a young age, very compassionate and empathetic. They are tender hearted. They are caring. They are wise beyond their years. I am also happy to say that it is also true of the adults that I have met who have siblings with Down syndrome. They speak lovingly of their siblings, they are proud of them. Yes, they will acknowledge the challenges that come with having a sibling with special needs and the unique concerns they face with their adult siblings. However, it is clear that they feel that their sibling is an important and contributing member of their family. And isn't that we all want to be and want all of our children to be as well?

So keep loving hard, sweet Rachel. You, my dear, inspire me in so many ways. You make me a better Mama to you and your brother by being an example of what we are called to do - love others as we love ourselves.