Tuesday, July 21, 2009

Golly, Oli

This is a typical morning with Oli:

Oli wakes up, wailing frantically. He is in his bed, safe and sound, but the sensation of crossing from sleep to wakefulness is not one he can endure without expressing his horror. So he cries. His shrieks are piercing and insistent. I rush to scoop him from his bed, hoping to get to him before he startles the three other boys sleeping nearby or works himself into such a tizzy that he is inconsolable. Once he is in my arms, he continues to thrash and scream to the sound of my voice until whatever switch is tripped and he suddenly buries his face into my shoulder and inhales his blanket mournfully, riding my hip all the way down the stairs.

The second my foot hits the floor, Oli bursts back into scream. "Hu-gree! Huuuu-greee!" He will repeat it--between wails--no matter how many times you assure him that yes, breakfast is coming. Again, he is thrashing and shouting. Twenty-five pounds of writhing unhappiness and misery, eyes wild and terror-stricken.

Before plopping him into his booster, I claim a banana from the counter and begin peeling it. This whole time I have been narrating in my most soothing voice, filling Oli's ears and maybe even his mind with the sound of my love for him. I sign one-handed as best I can. Banana. Banana. Banana. Hungry. Banana.

Finally, as I slide him into his seat, Oliver begins to understand. Food is coming. Maybe if he screams again? Once, twice? Like a freight train, the two year-old at my kitchen table shouts and cries and begs for food that he is never quite sure is coming. Not even when he sees it being offered. Not even when I hold it out. Not until the very moment he crams his mouth to overfull with a mash of bananas so thick it makes him gag. Only then can Oliver begin to understand. In this moment, he is o.k.

Seventeen months of routine, solidity, and love have not erased Oli's developmental delays. If anything, they seem more pronounced now. As he has grown older, he has made strides. But Oli is never farther than a squeak above "profoundly delayed." He stays right there, in the uncomfortable silence of "moderately delayed," existing in a pattern where a whole year of his life seems to have been erased, to have counted for nothing.

Oli is, in essence, an 18 month-old. But according to his birthdate, he will turn three in December.

I have never raised a child who did not meet milestones. While I could sympathize with women who worried over things like slow growth and sluggish cognitive development, I could not empathize. Until Oliver, my territory was that well-travelled road called "Highly Gifted." My children didn't just meet expectations, they exceeded them. Even Logan, who needed speech therapy, barely qualified when I insisted he get help at age 4. The few quirks that my kiddos had encountered were of the random variety that I now define under the heading "Not That Big of a Deal After All." Atticus' sensory stuff? Small potatoes. Logan's toe-walking? Ha! Jo's vision issues? In the same ballfield, but not quite on base.

No--I can honestly say that I wasn't the mom of a special needs kiddo until God brought Oliver into my life.

I love Oliver. Love him with a passion that surprises even me, I admit. He is sweet and kind, soft and vulnerable and--truthfully--maddening as I'll get out from time to time.

Oliver does not learn the way that most people learn. Something--alcohol exposure, most likely--robbed him of his ability to reason and retain. Guiding Oliver through the course of learning a new skill is something akin to writing on a white board, wiping it clean, writing again, wiping it clean, writing again ... and hoping, somehow, that some of it sticks.

Oliver only knows a handful of body parts--and those he only knows half the time. He gained a large signing vocabulary over a year ago and has lost most of it. The names of toys, people and places are meaningless to him. Single-step directions ("Open the book.") are sometimes too much. He imitates Manolin far more often than I'd like: walking stiff-kneed like a drunken sailor, dragging a blanket or mumbling, "Mum, mum, mum" as he pokes at the rug. The gains he makes over the months are not solid; sometimes they stick, sometimes they do not.

Some things, actually, have stuck extremely well. Oliver has been potty trained (the #1 part, at least) for a couple of months now. He can figure out how to stack blocks or balance things exceptionally well. He is wonderful when it comes to engaging with others.

And yet, every morning, he is completely mystified as to what is happening to him.

Every. morning.

There are other example, tons of them. Frankly, most of them are too heartbreaking to write about. Because the biggest shame in Oliver's situation is the fact that this was done to him. It's not just part of the package deal; it's the direct result of the sin of others. And boy, is that hard to swallow some days.

Oliver is a broken little boy. Some days he is oblivious and joyful, riding the wave of one thing he does not understand as it crests into yet another thing he can not comprehend. Other days he strains and pulls, showing us just how devastating it is to be someone whose body and mind are scarred by experiences that happened in those most defining of months.

Oliver is hard to parent. He is, as they say, a handful. There are days when I pour and pour and pour into him and feel like I get no glimpse of anything. Then there are days when he will light up and point to the front door and shout "Goose!" to indicate that he wants to play with his buddy, or point to my nose and say "no!" as he beams, happy to have finally gotten the answer in one of the incessant little games I try and educate him with.

But Oliver is a joy. A precious boy. I know that I am blessed to have him in my life; that's never been a question.

But what is a question is how Oliver's life looks as he grows up. Mr. Blandings and I talk often--usually at night, when the lights are off and we're getting ready to pray--about Oliver. What will his future hold? What can we do to best parent him? What will work? What is God leading us--and him--towards?

As usual, with Oli, there are more questions than answers. And, this, I'm learning, is the hallmark of special needs parenting. Moving forward with no clear direction at times, sprinting into the light when it presents itself, and having the faith on the journey to cling to the One who doesn't make junk.


April said...

What a wonderful blessing God gave Oliver when he put you in his life. God has placed Oliver in your family for a purpose, His Purpose.

Renee said...

Oh Sweet Friend I understand more than you know. He sounds so much like our Johnny who came home at 3 yo. I don't know what happened in those 3 years to hurt my sweet boy so but God is redeeming the years the locusts have eaten..He is making progress albeit slowly and I remember well those days that everything I poured into him seemed to leak out the holes of his heart. He may not be hitting the milestones on time and he may be referred to as slow by some or low IQ by others but he does now know he is loved and how to love. I don't know what his future holds in terms of higher education, employment, marriage, but I do know who holds his future and it is the One who holds Oli's too.

Galatians 6:9

Kate said...

Children don't have to be perfect...just perfectly loved.
And he is. And you love him with joy - wonderful!!

Fatcat said...

I saw something today on Psychology today that you might find interesting. It's about a neurosequential form of therapy that involves rhythms at the pace of the human heart at rest and all kinds of interesting things to help these wonderful children who have had traumatic experiences.

Here's the link.

If that link doesn't work, go to psychology today and find Cathy Malchiodi's blog.

Tara said...

I read your post and found myself nodding and then realized how amazingly blessed I am that our Simeon "just has Down syndrome". At least I have Ds developmental milestone charts and growth charts and can check off things as they come. I have a sense of what's to come and can temper my expectations accordingly.

I cannot imagine a more perfect family for Oli! The fact that you can verbalize his struggles is a major coup. This special needs parenting is a journey, one filled with amazing highs and lonely lows, but we are blessed to be equipped by the One who gave us these special gifts.

Unknown said...

I echo Renee's Scriptural premise as a prayer directed Upward on Oli's behalf ~ May the Lord restore the years the locust have eaten . . .

Christine said...

So fortunate is Oli to have you, and for you to have him. Our daughter, Star came to us at age 5, terribly damaged after a life on the streets with a prostitute. She is nearly 11 now and her delays and social issues seem more profound but a blessing she has been anyway. Oli will change you and your family in so many great and wonderful ways, and you his.

Sarah said...

The Lord brought you to mind this afternoon and I prayed. He is working!

Deborah said...

Thank you for writing such a wonderful post about your son. We have a 10 yr old son who struggles to read 3 letter words, but can memorize the lines to a movie. He doesn't always act 'the way he should' but he likes everyone he meets, and can make most of them smile.
We too wonder what the future holds, but never for a moment regret bringing our little starfish home at 16 months old.

Liz said...

thabk you for blessing us with a glimpse of your sweet son. :)