One Of The Lucky Few

Early Intervention Specialist, Kristin Steffan, lives in New Jersey with her husband and three children Ella (6), Jack (3), and Lila (15 months). Here Kristin shares what her family’s day to day looks like and how her profession has impacted her role as a parent.

 Kristin with her daughter, Lila.

Kristin with her daughter, Lila.

For those who might not know, can you explain what Early Intervention is?  

Early Intervention (EI) is a program for babies aged birth-3 who are experiencing developmental delays. Typically, pediatricians will refer families to call Early Intervention if a baby/toddler is not meeting developmental milestones. Parents make the initial phone call to EI and then the process begins to assess the child and decide which services are appropriate for the child and family. Services provided in Early Intervention vary by state.

What inspired you to become an Early Intervention Specialist?  

While in college for my Bachelor’s in Education, I enjoyed my time in Preschool programs the most.  There is so much growth happening in those very young years, their wonder and amazement of all things makes you stop and think about life in a whole new way.  After a few years of teaching Elementary and Middle School I decided it was time to explore my options. I was lucky enough to find out about my current position, a Developmental Intervention teacher.

How has your professional background supported your role as a parent?

I have met so many amazing children, parents and educators along my teaching journey. They truly helped pave my path and helped mold me into the parent I am today.

 Jack, Lila, and Ella.

Jack, Lila, and Ella.

What’s your philosophy on parenting?

Having a sense of humor! We have a 6, 3, and 1 year old, so truly our life is hysterical!

What’s the best part of raising your youngest, Lila?

Watching her beat the odds. Lila is beautiful, everything about her radiates. She works so incredibly hard to achieve her milestones and truly is so determined to meet those milestones.  While I was pregnant with her, we knew there were a couple of markers for Down syndrome. Even though we didn’t know for sure, my Maternal Fetal Medicine doctor was extremely negative about having a child with Down syndrome. After she was born and in the NICU the doctors were knowledgeable but only wanted to talk about the negative aspects of having a child with Down syndrome. Lila has proven over the past 13 months that she isn’t defined by her diagnosis and that she will work hard for what she wants.

What barriers have you and your family experienced in receiving EI services in New Jersey?

We personally have not had any barriers, but I also know how EI works. For families without a background in Education I know that EI is sometimes difficult to understand.

What have been the sweetest moments in Lila’s journey?  

Watching how much others truly love her, especially her sister and brother. Her brother is 3 and the way he loves her is so gentle and kind. Her 6-year-old sister is her biggest cheerleader and loves helping her work and play every day. They say there is nothing like a mother’s love, which I agree with! However, Lila is so very loved by so many people and to me that is the sweetest thing ever.

And what have been the most challenging?

Experiencing doctors and others in the medical community who do not value people with Down syndrome. For the most part we have an incredible medical team supporting our girl wholeheartedly.  However, my prenatal care was less than desirable and at that point there was only suspicion of Lila having Down syndrome. After that I felt as though I had to fight for my unborn child. To be in a doctor’s office pregnant and not even hear congratulations is such a difficult experience.  At that point I knew that I would be her biggest advocate and make sure she never felt as horrible as I was made to feel about Down syndrome.

 Kristin along with her husband, Tom and their three children.

Kristin along with her husband, Tom and their three children.

Your hopes for Lila?  

That she lives a full and happy life, being included and accepted for who she is, people to understand she is a person first, and that she is successful in whatever profession she chooses.

Stigmas you wish would go away about individuals with Down syndrome?

That people with Down syndrome are unable to have the same success and achievements that their typical developing peers have.  People with Down syndrome can be successful, productive members of society just as any other person. Another popular stigma is that people with Down syndrome are always happy.  While yes Lila is mostly happy she also has times where she is sad and lately mad when told no! Through meeting other families with older children and adults, there are a wide range of emotions when you have Down syndrome, just like any other person.

Are there any books, websites, or social media figures you would recommend to readers who want to learn more about Down syndrome or Early Intervention?

I have so many!!  Google became my friend after we were told she had one marker for Down syndrome. After she was born, I found so many more resources online and online communities through Facebook and Instagram. Those online communities are amazing and provide such a wealth of information.

Books:

The Lucky Few by Heather Avis

A Parent’s Guide to Down Syndrome by Jen Jacob and Mardra Sikora 

Websites: 

DS Diagnosis Network

National Down Syndrome Society

On Facebook there is a DSDN group and you are able to be linked to it from the above website. There are other private groups as well on Facebook for parents who have a child with Down syndrome.

Instagram was my honey hole in the beginning!! Searching various hashtags related to Down syndrome was the easiest way to find families sharing their journey. I love following:

@uplifeofemmyjoy

@karenjp0915

@extraevielove

@rubysrainbow

@theluckyfewofficial

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A note to expecting parents.

Raising Lila is just like raising our two “typically developing” children. We have hopes and worries for all three and only want the best for them. If you are given a prenatal diagnosis of Down syndrome, it may be done in a negative way or you may be made to feel your child won’t be valued.

Please do your research, reach out and talk to people, real people who have a child with Down syndrome. Also, when you give birth whether you know or your baby is born and you had no idea beforehand, everything will be okay. Whatever thoughts and feelings you have are okay, find people that have walked this path and reach out. Lila completes our family and I’m so glad I get to be her mama.


Please consider donating to Lila’s campaign for the BUDS—Bringing Up Down Syndrome Buddy Walk here and follow Kristin on Instagram to watch Lila grow!

All Images by Danner Photography