Saturday, October 31, 2009

Our Own Tribe

I have been thinking about this post for a long time but am just now getting it down. Moms (and Dads) of kids with Autism and perhaps of all kids with special needs kiddos, are of our own tribe. We are of different fabric than everyone else. I am not of the mind that we started out different and therefore were determined able to handle a special needs child. I think rather that our fabric changed once that baby or babies as the case may be, came into our lives. We became different ourselves. We began to battle our previous perfectionist ways. We applaud the small successes and truly rejoice over 'normal' occurrences that the rest of the world fails to notice. We fight for our children. We take on any and all individuals standing in the way of our child's progress and we do NOT discriminate. Family, Friend, Teacher, Principal...whoever you are, we want you on our team, but if you are not....If you are unwilling or unable to see the promise in the eyes of my child, then go ahead and step aside because I will run over you if I must. That is not my first choice, but that doesn't mean I won't make it. Do not mistake my kindness for weakness. Do not mistake my weariness for defeat. Parents of children with special needs are not to be underestimated. Every day is a battle. We fight and scratch for every inch gained and grieve for the yards and years we've lost. And we take our jobs seriously.

But it would be a lie to paint us as these warriors without weaknesses as it simply isn't the truth. There are chinks in our armor that are not so hard to see. As we are in the midst of these epic battles for and with our children, we struggle with envy. We (or perhaps I should say I) envy those of you who do not struggle like we do. We envy your healthy children. We envy the peaceful way you waltz into new doorways and new situations without a care. We envy the food that you can CHOOSE to feed your children. Macaroni and cheese. What would I give to break that out for dinner on occasion? I am not a fan of McDonald's (see previous posts on feeding children toxic sludge) but I sure would like the option of swinging in there in a pinch. We envy the regular kid-moments that you likely take for granted. The age-appropriate speech; the imaginative play; the playing with other children--social skills...things your children learn naturally, easily. We are tired of fighting, coercing, begging, prodding, bribing and repeating all of those skills in hopes that somehow they will stick on our children. We are over the meetings, the special schedules, classes, therapies and diets. We are tired of the medical bills that insurance won't even consider paying. We are tired of struggling to find babysitters and paying more than everyone else. We are tired of no date nights and worrying that nursery workers can't handle and just might harm our children. We are tired of not being able to go out and not being able to have friends over because of difficulties with our kiddos. We are sick of fretting over kindergarten and wondering if our children will ever be mainstreamed. Is college even in the picture? Should we bother saving for it? And what about the As the Kroger bag boy (who is special needs) packs my grocery bags, I wonder if that is the fate of my children. There is no shame in working as a bag boy at Kroger, but I want more for my children. I want them to have choices. For now, life has made their choices for them, and again, I resent that.

Perhaps envy, bitterness and resentment all bundled together are my tragic flaw and possibly that of some other moms of Autistic kids. OR possibly it is these emotions that drive us ahead, refusing to take NO for an answer. I like to think that LOVE drives this ship, but I have to admit the other emotions are there and they move me forward too. Still I try. I try not to be bitter. I try not to be jealous. I try not to worry. Some days I am better at that than others. So if you catch me on a weak day, throw me a little grace and know it's not about you. It's not about you at all. It's just hard where I am. And some days I just can't bear to hear how fabulously brilliant your child is. Just not today. Tomorrow I will do better. Just not today.

But I want to say that even in the darkness, there is hope where I am too. I was reading my devotional the other night and it was about God making good of our weaknesses. About His uncanny ability to use us regardless of our skills or lack thereof. And truly I was just cruising through it, not really thinking to deeply about anything when a portion of a verse smacked me in the face "....For Moses was slow of speech...". In Exodus 4:10, depending on the version you read, Moses is listing reasons why he isn't a good fit for leading the Children of Israel out of Egypt. He reminds the Lord of his weaknesses in an attempt to weasel out of a big and intimidating job. The good news? God doesn't let him off the hook and Moses is a Bible hero, flaws and all. I can't tell you why exactly those 6 words brought tears to my eyes, but they did and still do. MAybe it is because I know the end of the story. I know God uses Moses for great things. It also fans that flame of hope that never dies for a Mom. This verse says to me "It can happen. Anything can happen. God is bigger than any disability. This is not in your hands or under your control. You can't see what God sees. But He has promised that He has a plan (Jeremiah 29:11)" and the verse from a hymn from my childhood "His eye is on the sparrow, and I know he watches me" plays in my mind. As I fight to grab onto these words and hold them close for my family, I leave you with the full lyrics of that hymn.

(Turn up the volume> Player is at bottom of page)

Why should I feel discouraged,
why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion?
My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I’m happy,

I sing because I’m free,

For His eye is on the sparrow,
And I know He watches me.
“Let not your heart be troubled,” His tender word I hear,And resting on His goodness, I lose my doubts and fears;Though by the path He leadeth, but one step I may see;His eye is on the sparrow, and I know He watches me;His eye is on the sparrow, and I know He watches me.
Whenever I am tempted, whenever clouds arise,When songs give place to sighing, when hope within me dies,I draw the closer to Him, from care He sets me free;

His eye is on the sparrow, and I know He watches me;

His eye is on the sparrow, and I know He watches me.



Emily Doss said...

My friend posted a great poem describing parenting a special needs child- they have a 2 children with Downs and a child with autism (and two more). Check it out here-

Michelle said...

Thank you so much for your post. I've been struggling the last couple of days and your words were just the ones God wanted me to read.

Tracey said...

Great post! You say what so many of us feel and it gives me great comfort. Ahhh, to go back to those pre-autism days without a care in the world!

The nice thing about God is that He is bigger than autism. He does have a plan for each of our children and He can heal them also. I started a great book by Max Lucado called Fearless and it is helping me to let go of that fear of the future a little. It has been really freeing.
Thanks again for the great insight. I often have tears in my eyes when reading your posts regarding dealing with autism.