DSAM: Sara's Story

Sara and Liam

Down Syndrome Awareness Month gives me a beautiful opportunity to share not only my story but the stories of mother's who are raising children with Down Syndrome. It is important that we share our honest experiences in life in hopes of supporting, inspiring or generating genuine empathy for others.

Blake and Liam

Sara and I met because of our boy's 'designer genes'. It turns out that this "little something extra" comes with a whole host of benefits like instant connections with people with whom you may have otherwise not met. Sara is an Artist and Art Teacher. She is also an advocate for her son Liam and mother to the lovely Lupe. She is strongly connected to the Spanish speaking community and is a founding member of CCDSN (Central Coast Down Syndrome Network) along with myself and other fabulous mother/advocates you will meet over the coming weeks as I feature their stories.

Sara and I

Sara has graciously agreed to be the first to share her story in honor of DSAM 2015!

It’s Fall, time to start thinking about costumes and pumpkins and orange colored things.  Or pink cause it’s also Breast Cancer Awareness month.  For me, it’s also an “Awareness”month I never thought I’d be so connected to.  It’s Down Syndrome Awareness month.  There are SO many things that cross my mind every day and I could write for hours and hours. Some is positive and hopeful and some is difficult.  It’s the same roller coaster as with any child, but I definitely believe it to be more intense.  

I find myself sometimes on the defensive because I hear so many stories from others; hard stories about ignorant comments from strangers or low expectations from professionals. Part of me can’t believe it because for the most part we’ve had positive experiences .  I wonder what I would say in these situations.  Would I think on my feet fast enough to have a good response? 

And then there’s these interesting little things that happen.  The person that looks at Liam for a while- and I start to wonder what’s up- and then all of a sudden they hand him a balloon.  The preschool dad that shows special interest and then I find out he has a niece with DS.  I try to catch myself from thinking that the extra attention or the long looks are critical, but rather, that person may have a connection with Down syndrome I don’t know about.  It’s so easy to be quick to judge others and their actions or words, but we just never know where they’re coming from do we?

I wonder about the kids at school, years older than Liam that take a special interest in him, the grocery clerk that always asks after him.  I wonder if big sister notices and thinks that all little siblings receive this attention, or is it just her brother?  Is she ok with it?

Sometimes I catch myself wondering, do the comments of “Oh, he’s doing so well!” mean that he really is, or were their expectations so low that they are surprised to see him be like a normal kid?  It’s the “high” and “low” functioning thing that my friends with kids on the Autism spectrum deal with a lot.  I’m not even sure what I think of those terms.  I am constantly balancing between accepting Liam just the way he is and constantly working to help move him forward.  I guess both are necessary.  

I have learned, more than anything else, that I need to be my son’s advocate because no one else is as invested as I am in his well being.  I research and ask for things from professionals.  Me.  All the time.  It’s exhausting.  I’m tired sometimes of not being able to take the medical or educational experts advise at face value, it would be so easy. But I have to research everything myself too: I am his mom and I know him best.  I have files full of research and reports from audiologist, nutritionist, chiropractor, Ear Nose Throat Specialist, Endocrinologist, etc etc.  It never stops. And he’s basically a healthy kid!

So, here I am all over the place in my thoughts: up down up down. But Liam is doing well.  He’s in preschool now and he participates, and other kids play with him.  He comes home repeating little parts of songs.  I feel good about taking him to school and trust that he’s in the best place.  I knew it was a good fit.  When he strays from the line, other parents gently guide him back.  I didn’t have to say anything special, they just do it, because we lucked out with a nice group.  And the teachers encourage parent participation.  It’s hard to believe that if I had sent him to a Special Day Class it would not have been encouraged to stay as much as I am doing now (And I hate the meetings that constantly remind you of how delayed your child is).  That being said, if I stay to help, it’s with other kids, or helping with material prep in some other part of the room, because he doesn’t do as well when we are there!  He’s stretching his wings and testing his limits.

What I have learned with my son applies to all children, and myself as well: keep expectations high. Don’t put limits on yourself or others, keep reaching up!  And, hard work pays off.  It’s not easy, but things worth working hard for rarely are.

Thank you so much Sara for sharing your story with Evolution Revolution readers. Can you identify with Sara? leave us a comment!