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American philosopher Ralph Waldo Emerson
said it best...
"It's not the destination, It's the journey"
"It's not the destination, It's the journey"
Milestones will be reached and celebrated as your toddler moves into childhood and adolescence, then through the teenage years and into adulthood.
Milestones will be reached and celebrated as your toddler moves into childhood and adolescence, then through the teenage years and into adulthood.
(Please Click on any downward arrows at the bottom of the pictures and Light Blue Text for more information)
The journey we traveled may share some characteristics of yours, but remember each journey is as individual as those that take part in it. Our hope is that some of the triumphs and anxieties that we experienced may help you negotiate those you may encounter. Just being parents makes all of us partners in creating a world that allows our children to be safe, to be educated, to be truly happy, to have long enduring friendships, to feel loved, and to take part in all aspects of society. Clearly, these are the wishes of all parents, no difference there!
Questions, Questions, Questions....
Questions, Questions, Questions....
Being new parents, we had a 90:10 ratio of questions to answers. That didn't include the questions about a little girl having an extra chromosome and a heart condition. Lucky for us we had an excellent pediatrician who was either able to answer our questions or lead us to someone who could.
Scariest questions first. Would our little girl survive her heart condition? Would she have to have oxygen and take drugs her entire life?
Her heart condition (AVSD, VSD, & PDA) was surgically repaired at approximately 6 months of age. Katie had to wear oxygen and take medication for a time to help heal her lungs from the pulmonary hypertension that the heart's defects had contributed causing. Thank you, Denver's Children's Hospital. Katie passed away in 2020 (29 years young) due to pulmonary embolisms during the earliest years of COVID, her surgically repaired heart still intact.
Overwhelmed would have been a constant in state in our lives, but having to concentrate on the critical heart condition of our baby girl necessitated putting other questions and concerns on the back burner. It's true, "How do you eat an elephant? One bite at a time".
Now to some of the questions, those milestone questions. When will our kiddo hold her head up, crawl, say "Mama", be potty trained, and a host of others. The answer isn't a simple statement of time (everyone is different) but we were introduced to an organization, Child Development Center, that not only understood our questions and needs, but also gave us tools to be the best advocate for Katie. We utilized speech, occupational and physical therapy services along with pre-school services. Katie, with the help of us advocating for her, attended her neighborhood elementary school in a regular inclusive classroom (with supports) alongside her neighborhood friends and classmates. Friendships that would last into adulthood.
Most valuable lessons we learned:
#1 Never, ever put a limit or ceiling on what your child may learn or accomplish.
#2 Always have and demand expectations, "If you have none, that's what you'll achieve."
#3 You are the best advocate for your child.
It’s Just Elementary
It’s Just Elementary
The objective of education and school is to raise good humans. To that end, all children need opportunities to learn, that will mimic their lives when they leave school and enter the working world!
Humans do not live in isolation; they live, work, and socialize together. School is where it starts. “Inclusion” is the practice of teaching all students together in general education classrooms, but it is more than that. It is the primary building block of a tolerant society.
Kindergarten for us was a case of not knowing what you don’t know. It was a pack of little people that shared the same curiosity, energy, and apprehension of a new environment, learning how to get along with their peers and themselves, all while under the watchful eye of a wonderful teacher. During a Kindergarten “Parents Meet and Greet Evening,” parents shared many of the same questions that all parents have, and some which were unexpected, with our teacher. One question that I will always remember stunned me that evening. The question, “How will having a child with Down Syndrome affect my child’s learning, will it take time away from his learning?” Looking back, I now understand that we all were looking for the best possible outcomes for our kids. No one that evening understood the positive impacts on being educated and growing, side by side with a little girl with Down Syndrome (Inclusion). That would come later, down the road, as kids grew into their own individual selves, and even later when searching for their careers.
As parents, we utilize tools that are available giving our kids the best opportunity to succeed in becoming good citizens. For Katie, the tools included a teacher’s aide, speech, occupational and physical therapists. Katie’s aide assisted her when needed. This could have been Katie's aide answering of other kiddos' questions while the teacher instructed Katie and others, or helping with the setup of a class project, or any other classroom assignment that Katie was a part of. The aide was there to make sure that Katie, the class, and the teacher had the best opportunity for a learning atmosphere.
Remember, “Equal does not equate to Same.” Just because one child may need glasses to help see their lesson does not mean all children have to have the same glasses to complete the lesson. The glasses are an instrument that gives the same opportunity to learn.
The “Specials (Speech, Occupational, & Physical Therapy) were accomplished by observation in the classroom and minimal time was spent away from the classroom. Having the aide, at times, accompany Katie with the specialist, allowed those skills to be practiced back in the classroom.
Take Home
I. Special Education is not a place; it is a service!
II. An 'IEP' is successful when working toward appropriate goals. If progress isn’t being made toward those goals, don’t be afraid to make changes to the practice, adding additional services or even changing the goals.
Always have goals and be willing to adapt if truly needed.
III. It doesn't have to be complex to work. Sometimes the simple solution is the best.
Moving to Middle School or Junior High.
Moving to Middle School or Junior High.
Wow... they're not little kids anymore, but they're not adults either.
Wow... they're not little kids anymore, but they're not adults either.
Depending on the time of day they may still be the sweet, innocent, little kiddo that we nurtured, or an independent, mini, adult, who doesn't "need" or want our help and direction. Families with or without teens with Down Syndrome, are heading into unchartered waters.
In reality, the tools we have used to get us this far, will be used throughout their remaining years of education. The difference being, now we have many teachers instead of just one primary teacher! Some schools, may have an "education facilitator". This is a person that brings the plan and knowledge of the IEP Team (The IEP team is a collaborative group responsible for developing, reviewing, and implementing an Individualized Education Program (IEP) to meet the unique needs of a student with disabilities, with clearly defined roles for parents, teachers, administrators, and specialists) to the instructors supporting them in meeting the IEP goals.
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