Homage to Poems about Raising Special Needs Kids

Okay, here I go. I am about to offend a whole lot of people. I just have to say I’m sorry upfront and I hope you’ll forgive me. I’m headed into sacred territory. Coping territory. The place where good, caring people go to harvest sentiments to “make you feel better” about having a child that has some sort of special need.

One of the bloggy mommies that I read said it first. She just came out there bold and brassy and said it… “I despise the Holland poem.” GASP. You know the one… raising a special needs child is like getting on a plane expecting to go to Italy but you arrive in Holland, but Holland ain’t all that bad, it’s just different.

Well, I will see your Welcome to Holland poem, fellow blogger, and raise you the God Chooses Mom for Disabled Child article my Erma Bombeck. This is the one where God sees a really awesome woman with a lot of great qualities and says, “Let’s ‘bless’ her with a child who has a disability. It will teach her something amazing through it and she will envied and will be a saint herself because of it.” Hmmm. Isn’t that nice of God?

Next, another prose devoted to the character of our Heavenly Father: The God Said… poem. It my own words, I would say this is the series of the most frustrating answers to prayer I have ever seen. It’s like, “God will you… NO! If you would just… NO! I really need… NO! Could you please… NO!” Okay, glad I asked, I think.

Now, don’t get me wrong. There are some nuggets of truth in all of these sentiments and well-crafted poems. But, I might be going out on a limb to say that it makes people who aren’t going through the reality of raising a special needs kid feel better reading these than those who are. So, there is a rush to forward these links to your friend or family member to brighten their day. I’m inviting pushback here if I’m out of line. Maybe these do make you feel better.

Personally, I’m so thankful that I encountered these links though, along with some of the things that I have heard from very nice, well-meaning people in past two years. Things like: “God knew exactly what he was doing when he gave you Josiah as he is, because he knew you would be strong.” “You’re so creative, so God gave you a child with autism because he knew you would work really hard to play with him.” “Just think about what all God is going to teach you through this.” I found myself getting angry with God with each new phrase. How could he do this? If I was so good, and tried so hard to live for him, THIS was my reward? Not cool.

But, wrestling with all of this sent me on the most prized spiritual journey of my life. On December 12, 2008, I wrote this in my journal:

Here I am, Lord. I have some questions and I look to you for answers. I want to put aside any of my preconceived notions, my theology, religion, or advice from others, and I want to seek You for the answers. Straight up, what does your Word say?

> What do You say about healing–physical healing? Is it still for today?
> Do You allow bad things to happen to us to teach us a lesson?
> Do You bring sickness and disease to some people’s lives so You can use them for a greater purpose?
> What are the lies we tell ourselves about who You are and the place You have in our affairs?
> Do You withhold healing and help based on our level of faith and what we do?
> What are the blessings I’m entitled to as Your child?
> What does it take to get a miracle? Show me. I need healing for my precious son’s mind and body. How will it come?

I have devoted these past 8 months to studying God’s Word and listening to different sermons online addressing these questions. Scripture after scripture has re-energized my prayers, and has made me fall in love with Jesus all over again. Have I learned to be more patient? Sure. Have I learned a lot through suffering? Yep. Do I love my son and celebrate him more because of it? Certainly. Mostly, I’ve learned about God’s true character. I’ve been challenged not to put God in a box, and not to attribute things to him that are not in his nature. He is a good God, and he keeps prodding me on to hope, faith, and one day… victory.

I’ve said it before, and I’ll say it again. Either God’s Word is true, or he is a liar. He makes bold claims. “I am the Lord… I publicly proclaim bold promises. I do not whisper obscurities in some dark corner so no one can understand what I mean. And I did not tell the people… to ask me for something that I did not plan to give. I, the Lord, speak only what is true and right” (Is. 45:19).

What does he promise you? What does he plan to give you? Have you ever looked to see? Grabbing a nice Scripture verse once in a while for comfort is kind of like reading those poems I referenced earlier. It will give a short-term burst of consolation. But, God is not about simply consoling us. He is about saving, transforming, delivering, growing, directing, relating with, and loving, loving, loving us in the long-run. I challenge you to engage in your own journey to discover what he’s really like. I believe it will lead you into territory that looks more like hoping than coping.

The Comforts of Hugs, Swings and Hymns

My little son, not yet three, is not your typical little boy. But there are times that I forget that. Like when I hold out my arms and say “Hug,” and he says “Hug,” runs to me and wraps his arms tight around my neck. I’ve never heard the words “I love you” come from his lips, but he shows me that he does, and that he knows that I love him right back.

When we go to the park, I would love to hear the words, “Mommy, I want to go on the swing!” Instead, he grabs me by the hand and pulls me right to his seat of choice and says, “swing,” while lifting his arms up high. His whole body wiggles with delight. I sing to him while he revels in the back and forth motion, and I use the opportunity to practice “ready… set… (wait for him to say) go!” Or, we sing “School Days” and as we approach the lyric, “You wrote on my slate, I love you…” He says in his sweet voice, “JoJo.” Those moments are precious, and I know they are so fleeting as time marches on.

My most treasured times are right before bedtime when every once in a while Josiah takes a break from all the running around and the toys and wants to “sing songs” with mommy. He leads me to the rocking chair in his room, shuts off the light, and climbs in my lap. Lately, he keeps snuggling up even more into me, like he can’t get close enough as we sing for up to 30 or 40 minutes sometimes. My voice is nothing to write home about, but he will likely have great music talent one day–the way he is so drawn to anything that spouts a tune.

For some reason, the old hymns and ’80s praise choruses from my childhood come flooding back to me as I hold Josiah tight and rock him in the dark. So many years have passed since we’ve sung those songs in church, yet there is something so enduring about those words. And I guess they remind me of when I was a kid tight in my own momma’s grasp. Though a bit sketchy, the lyrics cross my lips and engage my spirit again. You might know the kind of songs I’m talking about: “O Victory in Jesus,” “What a Friend We Have in Jesus,” “We Bring the Sacrifice of Praise,” and “As the Deer Panteth.” (You Baptists out there will recall the first two, and you Assembly of God-ers out there will pick up on the latter.)

Even those old songs keep reminding me that while I do what only I can do, I can trust God to do what only He can do for me, for my husband, and for our son. And, if you’re a parent of a kid with autism reading this, I’m trusting and praying for you too, for we all need a massive dose of hope and for our children to break free of the shackles of autism.

It’s hard some days, like when you see other little boys Josiah’s age carrying on conversations in the grocery store or saying the darndest things that kids say. You just wish that simply your kid was like all the “normal” kids–whatever “normal” is. But then, as a parent of a child with special needs, you realize he is yours. He is beautiful. He’s funny and happy. He is valuable. He is a uniquely made little person. And comparing him to what he is not will rob you of seeing what he is right now. And, with autism, I’m reminded that there is hope, and that he has come a long way. Josiah is worth fighting for and putting myself on the line for every day until we see breakthrough after breakthrough. I will carry on a great conversation with him one day! I just know it.

I heard about his healing. Of his cleansing power revealing. How he made the lame to walk again and caused the blind to see. And then I cried, “Dear Jesus, come and heal my broken spirit.” And somehow Jesus came and brought to me the victory!

That Had to Be a ‘God Thing’

It’s really late tonight, and I’m so exhausted that I can’t sleep. Does that ever happen to you? Your head hits the pillow and while your body so badly wants to go into dreamland, your mind can’t stop racing with thoughts? I find that it’s better for me to just get up and do something when that happens to me, so why not do a little blogging?

Today was a really big day. I’m the Communication Arts Director at a large church, and we’ve been preparing for months for a one-day conference we put on at our church annually for people in church leadership in our region. Nearly 700 people came, and it was an awesome day where you could see the unity of God’s Church wanting to get better together with one goal in mind: more effectively and relevantly reaching their circles of influence for Christ. It’s a beautiful picture.

Anyway, it was at this conference where the latest edition of our church’s magazine was debuted, and it will be distributed to our congregation this weekend. I decided to write a little article about our experience with Josiah’s autism and how when something unexpected hits your family that it can shake your faith a bit, cause you to ask a lot of questions, and change everything about life–but that we can find hope. I really wonder how God is going to use our story to not only reach out to others who are going through something similar, but also to bring peope into our lives to offer insight and encouragement to us as we walk through this journey.

It already started today. After one of the sessions that I helped teach, a woman came up to me and said she had just read my story and that she has a daughter with autism too, who’s now 11. She so quickly offered to meet with me and be a support and voice of experience. As we got to talking for a few minutes, she asked me where I had my son in therapy. I told her that he goes to Partners in Excellence, and she said that’s where her daughter goes! Okay, these sort of meetings have got to be a God thing. She went on to say that she and her husband had developed some small group curriculum for churches that focuses on families who have children with special needs. You can check out their website: http://www.surreiasplace.com/. We’re going to meet soon. I’m really interested to see where this might lead… stay tuned.

If there’s one thing I’ve learned since my husband and I have been going through this journey with autism it’s that it can be such a lonely, confusing ride. It’s hard to find the right systems of support–people who’ve been there, and can also offer resources and encouragement that are on the same page as you are. Little by little, we’re starting to make some connections with other parents who have children with special needs, and I’m hoping that God will work this whole “community” and relationship piece out. It’s huge. I also realize my compassion radar is so up for people who are just getting the diagnosis for their child. Those early days are soul-ripping, and I want to be there for them, just as I need other moms there for me as we continue on this treadmill toward healing (ours and Josiah’s).

So, here we go. God, what do you have in store? It says in the Bible that God “works all things together for good for those who love him and keep his commands.”  I want to see how going through this fire is going to work out, and I’m expectantly looking for more opportunities where I can say, “That had to be a God thing.”

 Is there any encouragement from belonging to Christ? Any comfort from his love? Any fellowship together in the Spirit? Are your hearts tender and compassionate? Then make me truly happy by agreeing wholeheartedly with each other, loving one another, and working together with one mind and purpose.

 Don’t be selfish; don’t try to impress others. Be humble, thinking of others as better than yourselves. Don’t look out only for your own interests, but take an interest in others, too. You must have the same attitude that Christ Jesus had. Philippians 2:1-5