Day 22: Q&A Continued...

Q.  What's the *best* thing someone did for your child with Down syndrome?

A.  Hmm...this is interesting.  I have to think back to Sammi's Early Intervention days, and the fact that the best thing someone did for her, they also did for us.  Samantha's physical therapist was with her from nearly Day 1 until she aged out of EI at 2 years old to enter the public school system.  Renee pushed Samantha, made her work, despite the pitiful protests made by my baby who would much rather have spent her waking moments contemplating more sleep.  I, on the other hand, would cave, give in to Sammi's will, afraid of making her unhappy.  Steve was only too happy to join sides with Renee to get Samantha to where she needed to be, to hit her milestones, and to feel pride in her physical accomplishments.  That was my first experience in learning how to set high expectations for my child and never to underestimate her.

Q.  What was the biggest GREAT surprise with having a child with Down syndrome?

A.  Wow, where do I start?  So many GREAT surprises!!  First and foremost, the community, this great big club I've now got membership to.  Never would I have met such a broad and varied cross section of world culture and experiences, of races, religions, beliefs, educational backgrounds, socio-economic variety, talents, careers, you name it, and we all share one amazing commonality.  We're all here and represented in some way.  I've discovered just how small the world is.  Second, I have been so surprised by what I have learned.  What Samantha has taught me.  How much more people with Down syndrome can do than I'd ever thought possible.  How exciting it is to try to change minds and hearts, to teach others what I have learned during this process over the last 6 years. 

Q.  How did your parents "handle" having a grandchild with Down syndrome?

A.  Both parents and step-parents on both sides of our families embraced her instantly.  Never any question in anyone's mind that she was anything less than a baby first, a beautiful new member of the family.  They have all learned so much, too, from Samantha.  Pure love and support on all sides.  :-)  I know we are fortunate in this.  Sadly, I hear all too often the opposite, grandparents who want nothing to do with their grandchildren who are born with disabilities.  I just can't fathom how those kinds of prejudices still exist, and especially within families!  I can only hope those kinds of people will one day see the light.

Q.  What are you doing after high school with your child with Down syndrome?

A.  I think Samantha will have to answer that for herself in a few years.  I can tell you what I hope for her, but that's kind of like any parent projecting their own wishes on their child (I want my boy to be a football player...) and ultimately the child will do what they want to do.  I feel confident that Sammi will be a strong self-advocate, will have a fulfilling career, will likely be able to live independently.  At 6 she is already showing signs of this.  And we will support her in any way necessary to meet her own goals. 

Q.  Maybe this is nosey, but could you talk about if Sammi's Ds is why you didn't have other kids?

A.  Not nosey at all!  And no, Sammi having Down syndrome isn't at all why we didn't have other children.  Samantha was going to be an only child all along - we only wanted one.  Good thing, too, since it took us long enough to have her in the first place!

Q.  I'm curious to hear more about your GOOD IEP experiences.

A.  Would it be obnoxious of me to say they've all been good?  We've been having IEP meetings since Samantha was 1 1/2 years old.  Amazing that it's been that long!  So far, knock on wood, we've managed to come to agreement quickly and easily on most points at each of our meetings, although misunderstanding occasionally gets in the way and we've had to fight for a few services (like PT or ESY) at a few meetings.  I can only say how important it is that you get a draft IEP from the school a week before your meetings.  This will allow you to see how the IEP team views your child's upcoming goals, and will allow you to make notes, add details, add goals, and tweak things a bit so when you sit down at the table with the team you are prepared and informed.  Some valuable instruction given to us along the way was to ask for more, negotiate down to an acceptable place...it's easier to *reduce* after the fact than it is to *add.*  In other words, aim for the stars, but be prepared to take it down to something reasonable.  Know where you can start, where you can end up.  But if you have too little and want to add services/goals, it's harder to add them after the fact than it is to remove unnecessary ones.  Hope that made sense...

Q.  How was Samantha when you put her in preschool?

A.  Samantha, at 2 years and 3 months old, entered the county preschool program.  At the time there were only a small handful of other children in the class, with a teacher and two aides.  And one of the children, a little girl with complex medical needs, had a nurse with her full-time, as well, so the adults nearly outnumbered the kids!  Attention was pretty much 1:1.  The first day or two, Samantha cried on and off throughout the half-day she was there.  I remember vividly how excited I was when they told us she'd actually taken a nap there!  I had been thinking there was no way, no how my kid was going to sleep on a mat on the floor in an unfamiliar room at a time when someone else dictated what time she should sleep.  But sleep she did.  Each. and. every. day.  And while she was incredibly excited to see Daddy come to pick her up each day, she was equally excited to go to school every morning.  It was there that she learned to count to 10 in both English and Spanish, where she learned to take off her backpack and hang it up on the hook, where she learned to be flexible and to share.  As an only child, we knew we'd transition her to a school environment as quickly as possible - just having peer interaction was critical in her development.

With that, I believe I have exhausted all of my Q&A topics!  If you ever have other questions, feel free to ask!  Thank you again to everyone who parcitipated!