Miss Lila

We had a playdate today. With a mom, a baby, and a typically developing 2 and 1/2 year old boy named Joseph. I have to admit, I was a little nervous about it. I was anxious about the playdate, wondering how the kids would interact, wondering if Joseph would get tired of playing with Lila and want us to leave. I had the same apprehension 2 weeks ago when we had a playdate with a mom, a baby and a pair of 2 and 1/2 year old typically developing twins, a girl named Cora and a boy named JJ. I was so worried that Cora and JJ would leave Lila in the dust. That she wouldn't be able to keep up with them. That there would be such a significant difference between her and them. I was so wrong.

What was I so worried about? Lila had a great time at both playdates, and guess what? So did the other kids. : ) Lila can't walk, and nobody even cared. She can talk, she can laugh, she can play. She can stack blocks, she can play ball, she can share. She can opt not to share. And sometimes that's what she does. Like any other kid.

Lila didn't qualify for the special education summer school, ESY, this year. We have been going back and forth on what we should do about this- should we accept the decision or should we fight? Will Lila be okay if she doesn't go to school over the summer? Sure, there are plenty of community activities that we could get involved in but all of them are for typically developing kids. Not kids like Lila. Wrong again. Lila is, for the most part, like any other kid. Sure, she's behind in some areas but who cares?

I am holding Lila back. I am scared to let her move forward. I am scared for her to be rejected. I am standing in her way. I will not continue to stand in her way.

Came across this article today. Thought it was pretty appropriate.

Growing up. As with so many parenting issues, this one is more complicated when it is about our child with a disability. We feel more susceptible to having our judgement questioned or challenged. Just as we take risks with our "typical" children, we must take reasonable risks with our child with a disability, even though our heart is in our throat.

Our own fear or uncertainty may be causing us to underestimate our child's capabilities. We may have bought in to the idea that protection is more important than learning, and that our child's safety can be guaranteed. These ideas cause us to avoid taking risks or permitting our child- whether still small or an adult- from taking necessary risks. Our challenge is to balance protection and risk, and to remember that risk is essential to learning and is a part of life for everyone.

Lord, please give me the wisdom and courage to Lila do the things and take the risks that will enable her to grow up to be the most competent person she can be. Help me not to stand in her way.

Loving and learning~



  1. About adoption,
    You make a good point...I also have heard the waiting list is LONG and that is what I thought of right away too. I will let you know if I can get that answered....
    The contact person is Robin and here is her email:
    Also, let me know what you find out.

  2. The important thing is that you are learning. She's only two so you haven't 'ruined her for life'!!! Yet. Kidding.

    I know you have two grown children but this is your first with a disability so it's a learning process and you have an open mind. You AND Lila will be fine.

    I remember when my kids were small. Other mothers used to always tell their children, "Oh, be careful" or "don't do that, you might get hurt". Now I know we have to use wisdom but I always figured I'd rather have my kids get hurt having fun than to miss out on the fun. Of course, now they are all about taking risks but at least they are having fun and enjoying life. Watch out for those inappropriately placed trees, Jaralei!

    I'm just glad you are having fun with Miss Lila.

    I love you, sister.

  3. I have found myself with these same worries, but so far sydney seems to hang in there with her peers. She is not walking either and she understands things, but only says two words "kitty" and "uh-oh"... but she signs quite a bit. She is 21 mos and plays just fine with the 2 year olds. I agree with you... us mom's should step back and let them go have fun. Sigh!

  4. I had the same fears for Ashley back in Sept when she started Moms Morning Out with 10 'typical" kids. Ashley loves going there and they love her too. I think we (the moms) need to get over OUR fears...our little ones will be fine!!

    You are doing a FABULOUS job with Miss Lila!
    I'm so happy to have you and Lila in our lives. :)