Lucas Camilo

The past week was great for Lucas and for us, and we’re finally getting a chance to sit down and write about it.  The highlights were an extremely informative (and long!) visit to Children’s on Thursday, as well as the “My Baby Rides the Short Bus” book event/community gathering featuring parents of kids with special needs that we helped organize this past Saturday.  In between Lucas came down with a cold (and got over it quickly); our friends Jesse and Alessandra visited us from New York (and announced they’re expecting a baby!!); we escaped and went out on Friday night together for a fun Cabaret fundraiser for DC Jobs with Justice (complete with hand-dancing lessons); and finally, we decorated our first Christmas tree with Lucas.

Our long day at Children’s last Thursday is worth recounting because it featured one of the best visits with a team of medical professionals that we’ve ever had.  After an appointment with the complex care doctor — who helps tie all of Lucas’s specialists together and keeps on top of his overall health plan — we went downstairs to the MDA clinic.  It took a while to get Lucas settled in and record the requisite vital signs (he’s now about 33 1/2 inches long!) and by the time the team of doctors and therapists arrived Lucas was napping in his stroller/chair.  We started talking with them and soon Lucas woke up, and fortunately he was in a good mood and ready to perform.  The physical medicine doctor and researcher had never met Lucas before but presumably had read lots of reports about him.  They were genuinely impressed at how well he is doing, and in particular, extremely positive about his cognitive development and potential for interaction and communication.  The doctor said almost immediately “get him an i-pad!” and later handed us a prescription.  It’s mind-blowing to imagine that these hip computer things might help our baby tell us what he wants and feels, but since we’ve heard success stories from other parents, we’re willing to try.

The doctor and physical therapist had lots of other great ideas.  Maybe most significantly, they helped adjust Lucas’s stroller/chair.  Since we got the chair back in July we’ve struggled with it.  His big head makes him slump him down and either get spaced out or appear uncomfortable.  These doctors, though, looked at the angle of his hips and called in a technician who loosened a few screws and opened the angle of the seat slightly.  We put Lucas back in the chair and he actually smiled!  Suddenly he had more stability in his torso, meaning more room for his lungs, meaning more oxygen and more energy.  All five of us stood and ooohed and aaahed at how great he looked, and at the miracle of a more space in his torso bringing so much alertness to his face.  (Note to any slouching readers: this applies not just to Lucas, but to you, too!  It is good for all of us to sit up straight, and not take that space for our lungs for granted.)

The great ideas and positive reinforcement around Lucas’s growth and development went on for over and hour.  We then eventually we met the new neurologist who’ll be working with Lucas, a young doctor who showed interest and willingness in do research around Lucas’s disease.  By the time it was all over we had been at Children’s for six hours without lunch and we were all ready get home.  But unlike past visits when Lucas spent the day at the hospital getting poked, prodded, measured, and interrogated without getting much in return, this time we went away excited, with dozens of new ideas.

Two days later, we hosted the “Baby Rides the Short Bus” event.  About 45 people — many of whom were our wonderful friends! — turned out on a cold Saturday evening to listen to five parents tell their stories of raising kids with disabilities.  Krista welcomed everyone and introduced all the parents who would share.  Jen Silverman, co-editor of the book, came from New York and opened the stories section of the event by reading from the book.  Then Tricia, a mom of 2 and blogger from Baltimore read from her blog.  Then Jane, a mother of five from DC and activist with Empower DC, told about her son, Andre, who sat next to her.  Then Burke read from our blog (and got the whole crowd teary-eyed), and then Doreen, mother of two and director of the local affiliate of Family Voices, talked about her family and about the challenges of discrimination in schools in Washington DC.  We then opened the floor and more parents of kids with special needs shared their stories about ignorance, discrimination, fighting for their kids, and the joys of raising unique families. We ended with a potluck dinner and time for people to meet and share information.

It was definitely humbling for us to share the stage with parents who have so much more experience than us, and relieving to be in a space where we could talk about how hard it can be to people who know what we’re going through and, as much as anyone can, what may lie ahead for us.  We were also really happy to learn about new resources — including Jane and Doreen, the two other local parents on the panel.

One of the amazing moments near the conclusion of the event was when one parent asked the crowd how many people were parents of kids with special needs (a few) and how many were friends of parents who have kids with special needs (a lot).  She said, “Wow.  I don’t have any friends left who are parents of ‘typical’ kids.”  She said that most of them can’t handle her family, and they get embarrassed or impatient when her kids act “strangely” in public.  So the success of the event wasn’t just making connections with other families who are facing similar challenges as we are.   Ultimately we all want our kids and families to be loved and embraced by everyone, so it was powerful to have so many friends and strangers there to listen to our stories.