Change: Part 1

You know those relationships that come into your life and change everything? Most of them time, it is just one person we think of.  But in my case, it is an entire team of people who have swooped into my heart and changed my way of thinking.  Last week, I had to make the decision to let them go. Not for lack of love.  Not for a lack of caring. But simply because we need to go where the wind is blowing us right now.

I am not a fan of change.  I do not usually adjust to it well.  Routine is good for me. It reassures me and keeps my busy mind focused on a daily plan.  This is where Tessa gets it from, huh?  

That is the really neat thing about life, you really never know what is going to come your way. When opportunity pops up, you can either take it or run from it. And I have learned that that decision is so much more than simply deciding to do one or the other; especially when we cannot guarantee that the decisions we make are the “right” ones.

I broke up with Tessa’s school last week. I can call it a breakup because it was painful and heartbreaking and I was a serious hot mess about it.  Plus every time I thought about it, I just wanted to cry. I held onto Tessa’s open-enrollment at her first school for as long as I could, but it was not until the superintendent called me early last week to chat that I finally broke down and told her the news.  We had a heartfelt conversation and she assured me that Tessa will be incredibly missed. I couldn’t even properly thank her for the chance to have attended such an amazing district without erupting into more tears. Shocker, I know… Luckily for my husband, the crying has finally stopped.

This probably looks and sounds so dramatic for a school change, but it just proves how meaningful the relationships we have built there really are.  We love this school so much; the staff, the students, the atmosphere, the values of the district…everything.  This team of people at her school set the bar so high and blew away my expectations.

Everything I was concerned may happen going into school, didn’t. They took her in as their own and treated us like family. They saw her full potential and pushed her to it; never suggesting that having Down syndrome may hold her back from certain things. Never.  Not once.  They have done so much for her and for me.  This is where she started. They changed a belief in me and ignited a flame in my heart to always push for my girl no matter what.

This team of her’s, so passionate about their roles, has shown us what the right mindset can do.  They constantly demonstrate what every child deserves in education. They see her as a child first over her diagnosis and they fiercely believe that she can achieve anything.  The power of their confidence in her has made such a positive impact on her life.  Because of these values, Tessa accomplished so much with them.  This is all we have ever wanted for our daughter’s education–belief of what she is capable of and the chance to see it through.

I could go on forever about her team of teachers, therapists, aides, etc.  I could preach about how incredible each of them has been, but I will just assume that by now that you get it.  So when I say this decision was incredibly difficult to make, I sincerely mean it.  I am guilty of taking advantage of how good we had it there; how fortunate we were to have had our daughter in great hands. Now that it is time to say goodbye, it is hitting me how much we will miss them.

Tessa will be starting at a new school this fall…because our family is moving (again, this is another post in the near future). Not far by any means, but back near my hometown which is just a few minutes away from where we are now.  I never really imagined that I would find myself there again, but I feel good about it.  It certainly helps that some of our friends and families and their kids are there as well.  We have already been so welcomed by the new school.  They understand that the transition may be hard for us, but they have reassured us that they have Tessa’s best interest in mind as well as we move forward with them.

While this change feels rough right now, I am incredibly fulfilled about the experience we had at Tessa’s first school and thankful for her team there.  I am also hopeful and optimistic about what is to come.

Here’s to a new school adventure–wish us luck!

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Just a few members of her team from this past year. Glad I snagged a few pictures on the last day of school.

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!