Born This Way Exclusive: Parent Interview with Sandra McElwee

I had the pleasure of meeting Sandra McElwee and her son Sean two years ago at the National Down Syndrome Congress Convention in Indianapolis.  My sister and I were working the exhibitors area at my table for 47 Strings: Tessa’s Special Code, and a very charming Sean stopped by to visit us.  His mom’s space was just three down from mine so Sean was a frequent visitor at our corner table.

He delighted us with his stories of trying to find a girlfriend for the big dance, held at the end of every NDSC convention.  And I can’t be sure, but I think he took a slight shining to my sister.  Over the course of the weekend, we also chatted with Sandra numerous times.  She is the author of three books:  Who’s The Slow Learner:  A Chronicle of Inclusion & Exclusion, Who’s The Slow Learner: Adventures in Independence, and My Name Is Sean And I Have Something To Share.  Two of which sit on my bookshelf at home, and are absolute page-turners.  Upon meeting her, she shared stories about Sean; about various experiences raising Sean and about helping him navigate adulthood.  The two were a breath of fresh air; incredibly polite and undeniably hilarious.

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Rick, Sean, Sandra

Fast forward two years later, and I have been given a very special opportunity to have an exclusive interview with Sandra as season two for the hit A&E show Born This Way, where Sean is one of the cast members, gets ready to premier next week.  So I took to my personal Facebook page and asked my friends, “What kind of questions would you ask her or what kinds of things do you want to know?”  I sorted through the questions, and sent my list over.

Below is my interview with Sandra…

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Q:  What made you decide to commit to being a part of Born This Way?

A:  I truly felt that the executive producers wanted to tell the stories of the adults they were casting in the show. And by telling their stories, and exposing the world to the similarities of people with Down syndrome that the fear of the unknown would be removed and the barriers facing people with disabilities would disappear.

Q:  How has the show affected your lives?  Positively and/or negatively?

A:  Positively—Sean is receiving many speaking engagements and appearances and it’s a blast to meet all of the families he is touching through the show. I love receiving the messages from parents who are encouraged by watching the show—especially the ones with a prenatal diagnosis.  Negatively? Hmmm…during taping we don’t have a lot of time to see our friends.

Q:  How are/were you and Sean treated by doctors?  What do you wish physicians knew or understood about Down syndrome?

A:  Oh Boy…I have several chapters in my book ‘Who’s the Slow Learner? Adventures in Independence’ of good and bad doctor interactions.  I wish physicians knew that people with DS are individuals. I wish they knew that they should throw away what they learned in medical school about the possibilities and could realize that every person will achieve many things as long as the proper support is in place. I wish they knew not to chalk up a medical issue to DS and to look closer as to a real cause and a real treatment when medical issues arise (example: Sean diarrhea for three years with the doctor saying ‘people with DS have digestive issues…turned out he couldn’t tolerate sugar and his juice was causing it. If we had been referred to a GI sooner it would have not become an issue).  I wish Doctors would encourage parents and not make predictions about the future that they have no way of ‘knowing.’

Q:  What is your best advice for building independence and fostering relationships through the teen and adult years?

A:  You must give independence to foster independence. Yes, glasses and dishes will be broken when learning to rinse and load the dishwasher. Yes, taking the bus is scary, but with a nice GPS tracking app, much of the stress can be alleviated. Let your teen and adult make mistakes…learn from them…and try again.  Fostering relationships? That’s easy with other’s who have disabilities—make sure to plan activities (and expect the other parents to reciprocate) to get together on a regular at least weekly basis. To foster relationships with typical adults and teens? Let me know when you find the answer to that question.

Q:  What are some tips you would pass along for advocating for your child in the school systems?  

A:  Create a long term goal sheet from the beginning, and take it to every IEP meeting with a copy for each team member. We added recent photos demonstrating Sean’s advancement towards those goals each year. Make the goals lofty—‘Attend College’ ‘Articulate Speech’ Contributing Member of the Community’ ‘Appropriate Behavior in All Situations’

Invest in a copy of the special education laws—some states’ advocacy groups have them or Wright’s Law works everywhere. Husband and wife must be on the same page with the same goals and don’t argue in front of the school team (figure out the answers BEFORE THE IEP) and don’t email me the night before your IEP because you just found out they want your child in the severe class a one hour bus ride from home and you need to learn about inclusion asap. <grins>

Q:  What is one thing you think is important for others to know about parenting a child with Down syndrome?  

A:  Parent YOUR Child. Nurture their interests, support their goals. If they say they want to be a NBA Basketball player—tell them to go practice. If they want to drive, tell them they have to pass the written test first (like everyone else does). Remember, ‘can’t’ is a four-letter-word and take ‘no’ out of your vocabulary and make ‘try’ the substitute for it.

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There you have it!  I love how upfront and real Sandra is.  She is obviously an experienced advocate for her son and one heck of a mom.  I know I will personally find her advice valuable now and in the future.  Thank you Sandra for taking the time to sit down and answer these questions.  Hopefully you readers enjoyed reading her responses as much as I did.

To watch Sandra and Sean, don’t forget to tune in to A&E next Tuesday, July 26 at 10|9 c for the premier of season two of Born This Way!

The Battle Of Holding On and Letting Go

Knowing when to hold her hand and knowing when to let her fly.  I find myself conflicted between the two more often than not–like a constant battle of whether or not I am making the right choice with either option.

My daughter is ambitious and driven; and I will happily take some credit for that with her dad.  Even though this is sometimes worrisome, I marvel at her will to try new things.  After all, this is what we have been pushing her to do since her first therapy sessions as an infant after we learned of her Down syndrome diagnosis.  To face obstacles with courage while slightly nudging her outside of her comfort zone.  All in hopes to encourage and inspire her to rise above life’s challenges; to show her what she is truly capable of accomplishing.

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The tide is shifting now, well, for me anyway.  Where I was once reassuring her to make her leap, she is now looking for me to let her go.  She is getting a little older, a little more brave and definitely more vocal about her wants or needs.  With that comes the tightening of my grip when all along I have been promising to loosen it up as she got older.

This little girl, my first born, is so curious about the world she lives in.  Yet I sometimes catch myself holding her back from experiences because am afraid for her.  In stark contrast to everything we have been preparing her for, allowing her to further explore her independence feels more difficult than ever.  It comes with the territory. Being a mother to a child with a disability causes the emotional tides to change in different phases of parenting her.

While these phases are unpredictable, they usually offer a unique vantage point.  One where I can look out and evaluate where we are together. Perspective might hit me at a doctors appointment or when she is standing on the edge of a diving board; places that prove how far she has come or how much ground we have yet to cover.

It doesn’t escape me…the blessing of her being able to have these opportunities, the option to choose things for herself and the chance to see who she is becoming as she turns another year older.  I am undeniably grateful for that.  She is getting ready for kindergarten this fall and going to her first friend birthday party next week.  These are wonderful and amazing things. Things I once worried about for several other reasons.

I guess that is the most beautiful part of this journey; knowing we can still do this all right alongside her, while keeping adequate enough distance for her to seek and inspect experiences for herself. Knowing even more that if we allow her to keep trying new things, she will only continue to learn and grow tenfold.  And, finally, having the revelation that parenting a child who happens to have Down syndrome isn’t so different from parenting a child without it.