Friday, January 26, 2007

Asperger's Journey - the here and now.

It's funny... I feel like I should be posting some "conclusion" tonight.... but the reality is this is all just beginning. I realize the vulnerability for me in writing is that I'm liable to post something tonight and come back in a year and say "Oh - by the way I got that wrong...". I hate being wrong. I like having stuff figured out. Yet I feel fairly sure that the mystery behind Eli's mind is the blessing .... the dependence on God it demands... the humility it breeds in me personally. So I'll wrap up the "today" part of our personal story... and share some general things we've learned in another post or two.

We're in first grade now. Cindy, the wonderful kindergarten teacher and now dear family friend, has moved up to first grade with Eli, and plans are to move to second grade as well. I've swallowed hard and stared into space trying to somehow come up with adequate words to say what that means to us.

Oh... the genuine regret my heart now holds before God that I doubted for those days between finding out where he would go to school and actually meeting her.

Jason said, after reading the previous post, that he had forgotten how hard the years before kindergarten had become. In fact, reading it brought up again some of the unsettling anger and frustration. We’ve been free from most of that over the last two years.

This borders sounding dramatic, and I don't want it to, but I share it because it is the picture that comes to my mind. Having someone who is invested in your child... who cares about them and tries to really help, feels like a respite from war.

It's not always simple or easy to interact with kids with on the Autism Spectrum. The very word “Autism” refers to “self” … meaning one is more connected and interested in what is in their own mind than in the world around them. You’ll hear people refer to kids on the spectrum as “high functioning” or “low functioning” - In my simplistic understanding… I look at the spectrum through that lens… kids have varying degrees and abilities to get “outside” of themselves to interact with the world around them. And that’s on a good day.
Asperger’s carries with it the unique quality of sometimes being quite verbal…so you can have a child who on one hand can use words you yourself don’t know how to spell, and yet that same child can be completely clueless about the simplest manners or appropriate social interactions. They can blow your mind with an adult- like discussion over a topic of interest and the next minute be throwing a screaming fit like a two year old over just a funny feeling tag in their shirt. That can make interactions a little awkward. 

The simplest keys, at least that I’ve seen so far… are education, and caring.

Cindy, simply because of her daily interaction with Eli, has made the most dramatic difference in Eli. Her education and compassion has helped even us as his parents get to know him better. But others, especially in our church family have too. Becky teaches our Bible hour, - and lets him sit on a chair when the others have to sit on the floor. Johnny and Paula took on teaching two quarters of the kindergarten class… and instantly became Eli’s favorite teachers … because they listened to him. When they taught… he wanted to head straight to class. ( And we usually were at least 30 minutes early.) I know what they endured… countless conversations about this video game or that.:-) I have a lump in my throat as I think of their beautiful, not tired- smiles when I would pick him up. They still stop him and ask him questions…. and he always immediately looks them in the eye… because he knows they are looking right back at him, and not past him. Doug, Ron, Michelle, Carrie, Shawn, Keith A., Keith & Ronda, Linda… all people who have that knack for intentionally breaking past the barrier of talking ‘about’ and instead talking ‘to’ him.
Mark, Jennifer, Shon and Stacey have shared almost every Monday night for the last two or three years with our family. They’ve seen our meltdowns… our exasperated and embarrassing moments… and yet let us come back every week.  They’ve listened to me brag on Eli one moment only to watch him be taken out of the restaurant throwing a fit the next. They have allowed the good and bad of an almost sibling-like relationship to develop among our kids, which blesses me beyond belief. They had to be bold and assertive to make that happen. There was a time when I had basically didn’t want to be around people for very long… the “me” that wanted our family to look “put together” had to sometimes make visits with others short and sweet. I’m growing up a little more, - but it’s still a struggle.

I’m learning it’s not just me, however. I’m no longer surprised when I learn families don’t want to go to church with their kids and certainly don’t want to be a part of small groups. One mom I know… couldn’t remember the last time she’d been “out” with her family. That’s just something they don’t do anymore. ( And her kids are still in elementary school.) It’s too unpredictable. It’s safer to just “order in” pizza. It’s easier to be in your own house.

I can remember one time a friend asked Eli to spend the night with her kids. She knew he had some special needs, but reassured me she wanted him to come. Her kids had spent the night at my house. But him going somewhere else was a new thing. A thing I’d managed to avoid for a while. ( I’d contemplated telling Eli other people didn’t have houses… but he was too smart for that one.)

I felt simultaneously thrilled and sick to my stomach.

I remember the next day seeing him and asking how the night went. She said with only a moment’s hesitation, that it was good, - there were a few things they wanted to talk to us about, but it was good and they wanted to do it again sometime. I heard what she said,….. but felt like running away. I didn’t want to have any ‘conversation’ about it. In my mind… if it had gone bad, we’d just avoid it in the future. Because I didn’t know what else to do – and I didn’t want anybody to ask me or “talk” to me about it. .

That evening… we did get together. I dreaded it all day but sucked it up and got ready, (in my mind), for a rebuke. For a reminder (once again) of my inadequate parenting. For a fresh vision of how I was doing nothing to help Eli succeed even in the most basic things in life – like a sleepover.

It was a heartbreaking conversation… though not in the way I thought it would go. She wanted to know what they could do to help. When they encountered something they knew wasn’t acceptable to us or to them, how did we want them to address it? What did he respond to? What would make sense to him? There was never a question about “if “ they would address it. It might be difficult… but they weren’t checking out on us. It wasn’t accusing, as if to say “Are YOU addressing this?” It was just what she said it was. What can we do to help? The question carried an assumption of relationship. -And an assumption of the longevity of that relationship.

My defensive posture went to an uncomfortable “broken” posture. I stood in her laundry room that night a bit of a broken mess… crying, learning, explaining, and in doing so reservedly inviting one more person into my vulnerable world of not having it all figured out. My suspicious, defensive, tired, protective and private self backed off for a few moments to let someone else who was assertive enough in to love all of us on an intimate level. It’s a workout. For all involved.

But its worth it…… in so many ways.

… to learn all the lies you tell yourself about having life figured out in a nice neat package are just that…lies.
… to find the depth and good in people…. who know more than you and have much to offer you
….to find the depth and good in people…. who don’t know much but genuinely want to learn alongside you…
… to find the depth and good in people…. who don’t know much and don’t seem to care…. Just like I didn’t at
one time….

It’s worth it…
… to let people experience the joy I do from seeing life through a completely unpredictable lens like Eli does…
….to get the awesomeness that the God who “knit this child in my womb” and “numbers the hairs on his head” intends for him to bring richness that steps beyond the richness ‘normal’ brings.
….to find that the unknown isn’t so unknown to the God who walks you there… and that the journey isn’t made easier by knowing what you don’t know … or having what you don’t have, but by trusting that He equips you for all you need to know and have at the very moment you are living right now….


Angie said...

For someone who usually prides herself on being able to come up with the right words to say... I am left speechless after this post.

I hope you get me when I say this, but I like YOU better for what God has done in you through Eli. Your approachability is a comfort. Your dependence on God is such a model. And your willingness to be, dare I say it, even wrong about something a year from now... brings such glory to God.

I love you and Jason more and more and more and more...

DJT said...

Heather, thank you!! I often hide things from my wife, my family, my friends. I even try to keep secrets from God. How stupid is that!!!

Even though I have gotten better at honesty, confession and the freeing that it brings, I still, stupidly struggle with it. Thank you for another reminder!

Danna said...

Wow...I sit here with tears in my eyes. Not necessarily for what you have been through and go through every day, but because of your honesty and vulnerability to share those struggles. I love you so much. I can't believe sometimes the friends God has blessed me with.

My tears also come from the realization (again!) that I try so hard to let everyone believe my life is perfect and it's so not. Don't get me wrong: I have a great life! But I realized as I was reading this that I do this in regard to B. I want that "perfect" family and there is really no such thing.

So thank you. Thank you that we get to do life together.

Jeanne said...


I love you so much! Thank you for allowing us to see so deeply into your heart and your story. It has swept my heart away this morning into deeper places and thoughts of God than I have time to share right now. Perhaps later I'll post some of them. Thank you for spurring me on! I need to share more of our story of our oldest son with you sometime. We too were suddenly faced we unexplainable realities that crushed our spirits and our hearts. The road we had mapped out for his life was not going to be a reality. We had no idea of what to do or where to turn for help. Some very wonderful people stepped up to carry us when we could not stand. One of those was also a special teacher. His art teacher, Joy Hartsock, refused to be pushed away by him, even though he was trying to push everyone out of his life. She saw his heart first and his attitude and actions last. She loved him unconditionally, encouraged him constantly, and gave him a safe place to express himself in her class. She went where few were willing to go and she never gave up on him. She ministered to me in a way that I don't think words could ever really express. She became one of my closest and deepest friends because she chose to love my son openly and joyfully when few were willing to do so. There is so much more to share, but for now I’ll leave it at this: thank you for your openness; you may never know how God uses it to minister to other people just like me!

Vanessa said...

Heather, won't you please write a book? :)

Thank you for sharing all of this with us and being so open. You are an amazing women.

MommaFlee said...

I can't really add anything to this comment section that hasn't already been said...but Heather...just so you know...I know this is all a work in progress...and boy the courage you and Jason must wake up with everyday...but God must surely be so pleased with the way you are boldly submitting before Him. Thank you, dear sister, for having the guts to courageously follow God in the good work he is doing in your family. God must have something really awesome in store for your family because your faith has been challenged again and again. I can't wait to see what He will do. Eli sounds like a pretty special guy. Though I only remember him as a baby/toddler, that smile of his was and is a keeper! You are one of my favorite people of all time! God bless...and hopefully I'll see you both in March, Lord willing!

Love to you..flee

Dad said...

I know I don't write many postings but this posting I need to comment on. A thought that keeps coming to my mind is that God must think You and Jason are very special to have given you a child who needs special attention and help. He knew you two would handle it and provide the care required. Just think where Eli would be if his parents did not have the love of the lord in their lives. Hang in there sweetheart. God will assist you and Jason and Eli will grow to be a very fine young man.


Tammy B said...

Heather, You are so awesome to open yourself and pour out such pain and allow God to turn that pain into blessings to us that read! Isn't our God wonderful to put people into our lives that are images of His son (and they don't realize it!). My greatest fear in opening up about anything is the judgement that I would bring on myself and my family. Would people judge me as weak? stupid? silly? selfcentered? a sinner? (and I would imagine gasps of shock and disdain!) Satan sure has a way of building walls around us made out of our own imagination :) Thank you for showing me the strength that God is giving you to keep those walls torn down...and reminding me who is in charge of life and relationships. I love you so!

Brenda said...

I love your post and wish I were where you are emotionally today. I wish we had a "Cindy" in our life. Some days excite me when reading things like this...and's hard to read too. I'm sure you understand. I love Eli and I hope that one day we will be where yu are in this boat rowing together.
I love how you explained church and small groups because that explained our feelings in a nutshell. I don't like to feel it's Ian's fault we can't go to one, but so many times, I do feel that way. Finding a group that will truly accept him AND his disorder would be the key.
Thank you for your thoughts again. I love to hear about your journey and the path God has laid down for you.
Love you!

Heather Winter said...

Heather-again I am so thankful for you! We all have stuff we are hiding. It takes some brave souls to come out and say "this is me". It amazes me beyond anything I have ever known that God truly knows us and WANTS us more than anything. All our crazyness and fear...he WANTS it. "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you." 1 Peter 5:6-7
Lots of love!!

Heather Winter said...

P.S. Your dad is so sweet.

tim rush said...

Yeah, your dad is right. Cool that God picked you to receive the blessings that are called Eli and Julia.