One year ago today, Bill and I took Lila to her developmental evaluation with SoonerStart. That initial assessment at around 14 months is the one that hit Bill and I like a runaway freight train.
We had done the research, and we could see the writing on the wall – but to have someone ELSE say the words? To see how “below normal” her scores were in every single category…. it absolutely gutted me. I will never forget that drive home with my husband. I knew our lives would never be the same.
Honestly, it’s extremely difficult for me to look at the “big picture”. It’s just way too much to handle, and the future has way too many unknowns. But when I DO stop and think about where we WERE in October 2013, and where we ARE in October 2014, it feels nothing short of miraculous:
- Lila would not interact with us – no real communication whatsoever
- She would not respond at all when we spoke to her
- She would wander around the house aimlessly, stuck in her own little patterns and routines
- She flipped objects constantly and would hardly ever look up at us
- She only showed interest in electronic toys – toys that light up and make sound, or spin
- She didn’t seem to notice or care when we left the room, or left her at daycare
- We couldn’t take her outside much, and if we tried to set her down outside she would lose it
- She was not able to sit in a stroller at all (instant meltdown), so we had to carry her everywhere
- Lila loves to play with us – she will come find us in another room just to interact
- She is using a modified approach to PECS cards: she can tell us when she is thirsty and when she is hungry (and even what she wants to eat) She loves bringing us the cards, and sometimes uses them just to have that positive interaction
- She babbles constantly, and has started to repeat words or sounds AND display motor imitation that she hears and sees both from the TV and from her Daddy and me
- For the many things she is unable to communicate yet, she finds little ways to try and get her point across (ie pushing us to where she wants us to go)
- She loves board books, bouncy balls (she will roll a ball to us!), she plays with balloons, etc.
- We can go places with her (although it’s still challenging) – restaurants, stores, even the park. She will even sit in a stroller now.
- She’s using the iPad to play games and even create little works of art!
How can you thank someone enough for GIVING you your child back? I know Bill and I are the ones who do the work at home with her, we involve therapy (in one way or another) into almost every single one of our interactions with Lila.
BUT…if it weren’t for Janet…. it makes me all teary-eyed just thinking about it. The truth is, if it weren’t for Janet – we wouldn’t have the little girl we have today. We will never be able to thank that woman enough. There are just no words. She gave us the tools, showed us HOW to get into Lila’s little world, and to slowly (but surely) help draw her into ours.
We still all have a VERY long road ahead of us, but we will continue to take it one day at a time, and celebrate each and every step she makes. No accomplishment is too small – we don’t take ANYTHING for granted at our house!