Thursday, June 6, 2013

A Dream for my Daughter

At this very moment, Ryan and I and the girls are in Aspen.


So maybe I've got just a little too much free time right now.

Or maybe I'm on a "Rocky Mountain High".

But I've been thinking just a bit about the Bird's future.  I mean, way-off future.  Since thinking about what the future might possibly hold for Lily typically produces nothing but a bunch of anxiety and fear in me, I try to avoid it at all costs.

I think it makes me nervous because there is so much unknown.  Will she talk?  Will she graduate from high school?  Will she drive a car?  Will she ever live on her own?

I just don't know.

Raising a child with special needs is challenging.

Challenging because our kids don't fit the mold.

They are different.

And the general population doesn't always know what to do with different.

Yes, we've come a long way since people with special needs were sequestered away from society in asylums.  Or when parents were told to place their children in homes because they would never progress and would be a burden on the family.

Yes, we have learned that many of these special needs individuals are highly intelligent and very capable of learning.

Yes, there are many services available today for our kids to help ensure that they can be contributing members of society and have a bright future.

But here's where my thinking starts to veer off course just a little.

Many of those services are about conformity.  Teaching our kids how to function in society with their peers.  How to sit in a classroom with others without causing interruptions.  How to write with proper pencil grip on lined paper.  How to appropriately walk the halls of a school.  How to check out a library book.  How to do a project for the science fair.

Yes, exceptions are made so that our kids can participate in these tasks and be successful.

But at the end of the day, the goal is to end up completing those same tasks as their peers.

Our kids may take a different route but the final destination is the same - do what their peers are doing.

Now, I don't have a huge problem with that.

Our kids do have to learn how to appropriately attend school and all that entails if they are going to attend school.  I don't believe we should be sending them to school for free babysitting.  There should be active learning taking place, even if the starting place is simply learning how to behave at school.  Let's face it - it's going to be hard to teach a kid how to read if he can't sit still.

But it is an undeniable fact that our kids work hard.  When a typical child attends school, things like lunch, recess, and PE are essentially breaks.  For a special needs child, there are no real breaks.  Lunch, recess, and PE are just more opportunities to practice skills that help them "conform", to blend in and be more like their peers.

As long as a child is continuing to learn, to meet educational and behavioral goals, and is progressing successfully, then there is no reason to assume that the course of "conformity" is having any negative impact on him.

But I can't help thinking beyond the school years.  To the time when Lily is 18 or 20 years old.

What if she doesn't want to conform anymore?

What if she's still nonverbal and doesn't really want to use a special device for communicating?

What if she's happy just doing something simple, something that gives her immense satisfaction and joy, but doesn't really count towards the statistics showing that she could be a highly functioning member of society?

For example, what if sketching all day long makes her happy?  Or tending chickens and goats brings her joy?  What if writing stories makes her feel peaceful?  Or gardening makes her feel productive?

Will I be ok with that?  With allowing her to do just that?

Or deep down inside, do I want her to keep pushing, to keep working so very hard, to keep "conforming", like I might expect her to do if she didn't have special needs?

While I obviously can't see 12 years down the road, and many things will change between now and then, I do want to reach the day when Lily is able to make her own decisions.  And when that day comes, I want to be respectful and supportive.

I want to help her achieve whatever it is that brings her joy.

I am not concerned with my child being a special needs success story in the eyes of the world.

I am concerned with my child being a special needs success story in her own eyes.

And in the long run, isn't that what really matters?


  1. That is EXACTLY what it means! Thanks for sharing.

  2. I'm printing off the 10 little reminders and framing it! I'm 7 months pregnant with my 3rd and my oldest is 3. I needed to hear this TODAY.

  3. And I obviously have mommy/pregnancy brain because that comment was supposed to go on your post on whattoexpect. Whoops ;-)

    1. Happy you enjoyed the reminders post! Hope the rest of your pregnancy goes smoothly. :)

  4. I understand your concerns for Lily's future - and have prayed about it regulary, partly from having watched four families close to me experience it. The children in each family had different special needs - none of them easy. But God did answer our prayers as those children's futures unfolded. He answered each one differently, but HE DID ANSWER - HE WAS FAITHFUL. I only share that to offer you hope, and I know it doesn't take away the concern. But one other clear blessing I witnessed in all of those families - and in Lily's family - is that the parents and siblings loved and cared deeply about the child and did all they could to make life the best it could possibly be for them. They prayed a lot, too, and had others pray as well. On an ENTIRELY different note, some of your concerns for Lily's future would apply to every child. It's easy for parents to want their children to do great things, accomplish great things, or maybe do what they - the parent - think the child should do ... and push them hard to do that ... and when the child, as an adult, chooses a different life it creates a disappointment that can be difficult. Even in choosing to serve God, a child may create challenges for their parents because the money won't be much or the area in which they are serving is dangerous or just isn't high profile. That may not be of much comfort to you, but my point is just to say that God has a plan for Lily - and all children - and, as parents, it's a challenge to help them find His plan and then, sometimes, to accept His plan. I didn't mean to ramble so long!!!! Sorry. But please know that the bottom line is that your Lily is being bathed in prayer, and we are trusting God to guide you and her as you go forward in faith into the future.

    1. Thanks so much, Mary. And you're right - special needs or not, our job as parents is to raise adults, and that might not look exactly like we thought it would. And that's ok. Because God is ultimately in control. Appreciate you!

  5. Lily is very fortunate to have such a loving, thoughtful parent who is willing to accept whatever may be in her heart...this would be true with or without special needs...but more special because there is. I don't know if I'm there yet in my progress as a parent. I still can't see the future without my heart palpitating and wishing I could bend it to my will...the future itself and my son's special needs. Thanks for sharing your more enlightened approach.

  6. It's like you read my mind. I was thinking about this same thing on Thursday - on my way to do a tour of a special needs school for my son (who has ASD). I wondered, with how he experiences sensory overload so easily, if he would ever be able to process enough factors at once to be able to safely drive. Then of course the thought process expanded to so many other areas of life. Most of the time, I'm able to fully embrace my son for what he is - which is a super sweet, adorable, and intelligent little boy who I wouldn't change for the world. Other times, it hits me in the face the he has a "significant delay" and I don't know if he'll ever be "a functioning member of society" and that fills me with so much anxiety.

    Fortunately, I am always able to get past this and go back to accepting that I can't know the future and celebrating every tiny bit of progress my son makes. I sincerely hope he'll be able to learn to communicate with me...when I truly stop and think about it, at this point, that's enough "future goals" for me. At the end of the day, I love him exactly how he is and I feel like my desire for him to "make progress" isn't the same as wanting him to become like everyone else. I want him to grow as a person - to be able to communicate and to be able to handle interpersonal interactions - not because that's "normal" but because I see that he's trying so hard, and I know it would make him happy.

    Thanks so much for sharing! The clinic manager at the school we went to tour the other day told us about your blog, and I'm so grateful she did! :)


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