MADE (Part 1)

I was pushing Rhema on a swing when two girls excitedly ran over to us.

“Wanna play with us? Wanna play with us?” they asked Rhema.

A pause.

“Can we play with her?” the girls asked me.

You would think I’d be prepared for this, used to it by now, but I wasn’t quite sure of myself.

“Um… yeah,” I said, wishing that Rhema would magically possess social skills and play skills when I took her off the swing.

The girls attempted to talk to Rhema and “play” with her, but she ignored them, and in short order, took off running. The girls were confused, but we chased after Rhema. As I watched the two girls, I was intrigued by their typical-ness. They were Rhema’s age, and I paid attention to every word they said, every thing they did.

I wonder if I will ever get to a point where typical development no longer amazes me. I wonder if the day will come when I don’t feel that familiar twinge of sadness creep in when I see the things that children Rhema’s age can do. Will I ever get over it?

I tried to assist the girls as they attempted to play with Rhema, but it did not take long for them to realize that something was different.

One of the girls, named Mia, finally looked up at me and asked,

“Is she not a regular girl?”

I can talk just about anyone’s head off about autism … but this day I was thoroughly at a loss for words. “Well,” I stammered. “She has trouble talking and understanding everything you say… but she’s really very much like you. She loves to play and laugh and swing and…” (Rhema darted again) “… and run.”

The girls were not giving up; they continued to try to engage Rhema. When she ran off for the umpteenth time, Mia exclaimed in exasperation,
“Why did they make her this way???”

I was not put off by her words. She didn’t say it in a mean way, and she seemed genuinely frustrated for Rhema. In fact, I was kind of amused that she used the word they as if Rhema were a product made in China.

Before Mia took off, she looked at me and knowingly concluded, “It must have been something she ate.” She took off to find new friends.

Truth be told, in moments of frustration greater than Mia’s I have asked that question of God.
In her hospital room when a doctor looked at us and shrugged,
In the middle of the night when she shrieks,
While on my knees scrubbing up poop art,
During a major meltdown in public,
During a self-injurious, destructive phase,
When I cannot figure out for the life of me what she wants or needs,
When the non-stop vocal stimming is about to make me insane,
I have thrown my hands up and cried, Why did you make her this way?

I cannot say I know the answer fully. I think it’s something I’ll be learning about for all of life. But I know that it’s o.k. to be honest with God; I know He can handle my questions, my frustrations. Ps. 142:2 says, “I pour out my complaint before him; before him I tell my trouble.”

And I trust that He hears me. And sometimes that’s enough.

I will say this.

This autism thing could have consumed us. Not so long ago, I was close to being swallowed up in self-pity and bitterness. I could have let the anger and the stress destroy my marriage.

But God rescued me from despair.

And day by day, He delights me with the little, wonderful ways He’s made her – and is making her.  He took my not-so-regular girl and, in many ways, made her my teacher. “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Ps. 139:14

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17 thoughts on “MADE (Part 1)

  1. a question i find myself asking a lot these days .. where were these girls’ parents? where were the moms or dads who should have been part of the conversation – who should be teaching their children some flippin manners and sensitivity.

    but yes, those moments sting. they always do.

    hugs.

  2. I am slowly learning to pour out my complaints to the Lord. And I hesitant to even call them complaints. He already knows what they are but it makes me feel better after I get them off my chest. It’s another step closer to having a real friendship with Him. And that’s what he made us for after all!

  3. I too find myself getting all teary when I spend time with NT kids, even if — sometimes especially if — they are treating my kids with tolerance. It’s hard not to go to the “if only …” or “why …”

    I don’t have a faith like yours, but I do have inner resources and the strength of my friends to help me through those rough moments.

    I can’t wait to read Part 2! Hurry!

  4. I agree that the girls didn’t mean anything by it. I am always the parent who just says, “he has autism” and try to explain what it would mean to them. I have found once kids understand they try to make an effort. It can be hard to see what the NT’s are doing. I don’t seem to get stuck on the why. It is what it is and we are richer for it in my opinion. It doesn’t mean it’s easy though.

  5. Jeneil, I needed to read this, this morning. We had a rough morning at school, I am discouraged, I need to let God rescue me from my despair…

    I know how it is to look at at “normal” kids and just wonder what it would be like to be their parent. I was at the park with my four kids, my nephew with classic Autism and my sons best friend who has Asperger’s. An adult woman was becoming furious with my sons friend. I crossed the park as quicKly as I could. Just as I reached them she said what is wrong with you. Exasperated I said he has Autism, just leave him alone, I was so hurt that an adult could treat him this way. Thank you for always reminding me that God has a plan for all of his children.

  6. I love that Scripture. In fact, I’ve been pondering it for a post of my own, but it hasn’t all come together yet.

    This is one of those posts that is powerful on many levels: not only are you speaking the thoughts and sharing the experiences of so many, but for those who do not have autistic children, it gives us a very raw look into the hearts of mothers of autistic children. Something that I wish more could see.

    And you masterfully lead us all back to the source of our hope and peace.

    No doubt God teaches us more through our children than we could ever learn at any place of higher education.

    Love you girl!

  7. There’s that annoying saying that God gives special children to special parents. I don’t buy that at all. Nothing special about me!

    But I believe that God gives us the children that we NEED. I needed Kayla to teach me patience, and acceptance, and love with no strings attached.

  8. It amazes me to hear stories of children who TRY to engage. We’ve not experienced that much, here. Sometimes I feel like Reilly & Foster have a big bull’s eye on them that only other children can see. An easy target to tease.

    And yes, this autism thing and all the bitterness that arise from the hard, hard, hard times. They could consume us all.

    love.

  9. Oh my, I totally get you on this. I too could have been consumed by Autism and there are days that I fight the bitterness with a sour taste in my mouth. It can be so hard to watch typical children and not compare. There aren’t many children that try for very long to engage with the Roc for he’s pretty vocal about not wanting other kids in his space most of the time. It’s terribly hard to watch. I can say with total certainty that being this child’s mother has taught me so much more than I ever dreamed. I view EVERYTHING through different eyes since his diagnosis…

    beautifully written post.

  10. “I wonder if I will ever get to a point where typical development no longer amazes me.” – Even with Nigel starting high school, I am still amazed by typical development. And not just kids in his current age group. Even now, when I hear toddlers and preschoolers talking, I just can’t believe it. I never experienced that since both my boys had significant language delays. At least now I’ve been able to move past the longing for it. I’ll try to follow your example!

  11. Typical development IS amazing — all human development is amazing. What’s even more amazing is how easy it would be to take it for granted… if we didn’t have Rhema, Joy, Kendall, Nigel, Kayla, etc. That’s one of the many startling gifts of this journey, really — bless you for pointing it out.

  12. I’ve had this happen a lot with kids on playgrounds. “What’s wrong with her?” they ask.

    One time Riley articulated, “It’s hard for me,” in response. I can’t say I know exactly how you feel because our girls are so different, but I hear you, and I think you are doing a wonderful job mothering Rhema and Hope.

  13. “I wonder if I will ever get to a point where typical development no longer amazes me.”

    If that point is out there, I haven’t reached it yet. Sadness, not so much anymore (sometimes though), but amazement, absolutely.

    Sounds like the girls meant well and were trying to include her, which is good b/c surely she felt that even if she wasn’t ready for reciprocating yet. We’ve had (and still have w/ Bitty sometimes) those kinds of situations, and it’s hard to know how to explain things to young children.

    You handled a tough situation well ((hugs))

  14. Reminds me of a line from a song called “Thy Mercy, My God, Is The Theme of My Song”.

    I find myself repeating the phrase over and over again, “Without thy sweet mercy I could not live here, sin would reduce me to utter despair. But through Thy free goodness my spirits revive and He that first made me still keeps me alive.”

    This year my pastor told me, “God is not interested in your comfort. Your contentment, yes, but not your comfort. He’s interested in His Glory and our good.”

    It was a shocking truth to swallow, but now I can take the harder things in life a little bit better when I remember that out of the overflow of my heart come my actions and words. Do I believe God is sovereign? Do I believe he is good? Do I believe that he will keep his promises? Do I believe he has a plan for me and my children?

    How I respond each day says a lot about what I really believe in my heart about My God.

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