One Year Ago Today – The Developmental Evaluation

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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:

October 2013

  • 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

October 2014

  • 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!

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One thought on “One Year Ago Today – The Developmental Evaluation”

  1. Where was she on the spectrum? Mild,moderate or severe. My daughter is 3 a and we also seemed help and felt with the same “she’s a late talker let her be” she Wil be starting preschool next month and I have taken 2 months off work to do everything I can to be involved.my wife is a stay at home mom and goes above and beyond and dealing with her own issues (fibromyalgia) is very hard on her and me as well not being able to get more than 3 hours of sleep a night and the constant worry of my daughter and wife’s well being. Insurance is helping a little but we are struggling financially and barely getting by but we are making it.each new day brings something new yesterday I got a high 5 and a hug and a smoosh(she pushes her face into mine…her form of a kiss) I broke down in tears of joy! We have started all the paper work on everything but all we have got so far is a diagnosis of moderate on the spectrum. We are so excited for everything to start and we do everything we can that we learn from reading others stories and suggestions we are so thankful for everyone sharing all that they do.I wish you and your family all the best my heart and prayers go out to you.
    Thank you for taking the time to read my post.

    Like

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